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Brooke
04-24-2010, 01:26 AM
I wanted to start a thread about Rituximab since I will be starting this medication soon.
I am failing on Methotrexate and since I am in my child bearing years and due to the risks of other cancers with Cyclophosphamide, my doctors believe Rituximab is the best choice for me.

I would like to hear all stories, good or bad about experiences with Rituximab. For example:

1.) Why did you have to take this medication?
2.) Did you fail at another drug first?
3.) What medications were you on when you started Rituximab?
4.) What medications were you able to stop once you started Rituximab?
5.) How long before you were in remission after taking the Rituximab?
6.) How did it make you feel?
7.) What condition were you in prior to starting Rituximab?
8.) How many "rounds" of Rituximab did you have to do?
9.) How long does the infusion take?

I can probably think of more questions about Rituximab - but those are just a few :)

Any and all information will be greatly appreciated :)

Brooke
04-24-2010, 05:03 AM
I start my Rituximab on April 30th :)

elephant
04-24-2010, 05:52 AM
Great news! You will do well Brooke. Your going to slam dunk WG with the Rituximab!

Sangye
04-24-2010, 08:22 AM
That's great news! I'll post a reply to the rtx topic tomorrow or later--I'm tired from being at JHU all day.

Brooke
04-24-2010, 10:22 AM
Thanks Sangye :) get some rest!

Luce
04-24-2010, 11:10 AM
Hi Brooke

I'll try to answer as many questions as I can, but I'm still really new to Rituximab myself and am still learning too.

1.) I was started on Rituximab on 12th Feb because I'd had a flare while on Cellcept over Christmas.
2.) My doc now describes me as a patient with difficult to treat Wegener's because I've failed on almost everything. In the beginning I had 3 infusions of cyclo and 6 weeks of oral chemo. Then I was put on Azathioprine but that was definitely not right for me, so had another 3 months of oral cyclo. Then I was put on Cellcept which held the WG back for 7-8 months but I was put on too low a dose and flared at Christmas. So now I'm trying Rituximab.
3.) I was on 2000mg Cellcept (upped from 1500mg but too late), 10mg of pred, blood pressure pills and stomach protector.
4.) I took my last dose of Cellcept the day before I had my first Rituximab infusion and am now on 7.5mg pred
5.) Not in remission yet - I had two infusions of Rituximab two weeks apart but didn't work as well as hoped so I am now repeating the treatment
6.) The Rituximab itself was very agreeable without any ill effects except a scratchy throat for an hour or two during the infusion - you are also given some pre-meds to stop allergic reaction. I have hydrocortisone and piriton which makes me very sleepy during the infusion, but after a good night's sleep I feel no different afterwards.
7.) I'm feeling ok, the flare caused some minor joint pain but I was not suffering from any other WG symptom except fatigue. My docs just want to see this thing in proper remission and because my ANCA result is such a good indicator they want to see it at zero before remission is considered. My Wegs hit hard and fast causing huge nodules in my lungs and wiping out a lot of kidney function, but I healed equally quickly with full kidney function returned and all the nodules have disappeared without scar tissue. So I don't tend to notice the wegs until I'm seriously ill, which has it's blessings but also means I have to act quickly when I feel ill.
8.) I've now had 3 infusions with another to come - the first two were spaced two weeks apart, then two months later I had a 3rd on Tuesday with a 4th in two weeks time.
9.) Take a book! I arrived for my first infusion at 9am and didn't leave until 4.30pm. They do take the first one very slowly and increasing the speed gradually to prevent an allergic reaction and they kept for an hour after the infusion to ensure I was ok to leave. The second one was quicker because I tolerate the higher speed well and I left at 2.30pm, I also didn't have to stay after. The third infusion was treated the same as my first due to the 2 month gap but again they didn't make me stay and I left at 3pm.

I hope this helps you Brooke and that Rituximab works for you. I think it will work for me but I'm just being a bit slow to respond to it.

Any other questions please ask away!

Luce

Brooke
04-25-2010, 03:09 AM
Thanks Luce! I hope this round works for you! I'm glad you responded well to it, gives me hope :)
I think I will be doing an infusion once a week for 4 weeks. I wonder why some do it different?
Have a great rest of the weekend

Luce
04-25-2010, 03:36 AM
Hi Brooke

You mentioned that you were having rituximab instead of cyclo so I'm guessing your wegs is very active at the moment, this is probably why you're having 4 doses in a month. I'm on a milder regime because we're going for maintenace and remission, rather than hitting it full on.

I'm glad you have been spared the joys of cyclo, I am also of child bearing age and have had six months of cyclo so I'm not sure if I'm still fertile. Because rituximab isn't licenced for WG and is very expensive I had to try the drugs that were licenced first. The cyclo did work very well but because I can't seem to find anything that works as a mantenance drug afterwards and my docs were also concerned about my fertility, funding for the rituximab was granted.
When and if we decide we're ready for kids then I'll need to have a fertility test and will find out if any damage has been done. However I'm still very grateful for the cyclo as it saved my life!

Good luck!

Brooke
04-26-2010, 05:55 AM
Luce~
It is active in my sinuses right now, the methotrexate helped my lungs but not sinuses. Hopefully the Rituximab will work!!

Brooke
04-28-2010, 12:27 AM
I will be starting my Rituximab treatment tomorrow. The hospital got me in sooner than the clinic. I will let you all know how it goes :)

elephant
04-28-2010, 12:48 AM
Great Brooke, I will be thinking about you tomorrow and say prayers that all goes fabulous!

JanW
04-28-2010, 01:03 AM
Great Brooke! Good luck!

Sangye
04-28-2010, 01:10 AM
Yay! So glad you're starting tomorrow, Brooke. Best of luck to you. :)

jola57
04-28-2010, 05:12 PM
Good luck Brooke

Luce
04-29-2010, 02:33 AM
Yay Brooke, good luck! let us know how it went.

Col 23
04-29-2010, 03:27 AM
We havent connected before but best of luck and congrats on your marriage.
Col 23.

Brooke
04-29-2010, 07:50 AM
Hi!!!! I am back from my Rituximab infusion, I went in about 8:45 this morning and got done about 4:15 pm. They didn't start the actual medication until 10:30. Everything went smooth, no reaction. About two hours into it, I had a headache and my chest felt a little hot. I took a nap and woke up feeling better. I am feeling just fine now, just a smidge of a headache and a little tired, nothing I can't handle. Thanks for all of the good luck wishes :) I will keep you posted on how this Rituximab is working for me.

elephant
04-29-2010, 10:03 AM
Great Brooke, so glad you did well and feel good. Have a good night!

Lola
04-29-2010, 11:26 AM
Glad Rituxan went well for you, Brooke! Cheers, and sleep well.

Sangye
04-29-2010, 11:33 PM
That's great, Brooke! So glad it went well for you. Make sure you tell them about any symptoms you have during the infusion-- they need to keep an eye on it.

Brooke
04-30-2010, 01:17 AM
Here is me and my round face getting my infusion yesterday! If this picture doesn't show up, I think I give up trying to post pictures, lol!

309

Sangye
04-30-2010, 01:44 AM
Nothin' :D

Brooke
04-30-2010, 01:46 AM
Not sure what I am doing wrong here.

Sangye
04-30-2010, 01:51 AM
How are you posting it? Using "insert image?"

Brooke
04-30-2010, 01:56 AM
When I click on reply to thread, there is an insert image button - I have it saved as a jpeg on my desktop, that is how I have been trying it. I see the picture on my message once I upload it, but then once I click post quick reply, it automatically make the picture a link to click on, which for me works to open the picture.

Sangye
04-30-2010, 02:00 AM
Try putting your image on a photo hosting site like Flickr. Then copy the code for the pic and paste it into the "Insert Link" button next to the "Insert Image" button. That's how I get the funny pics from LOL cats. Took me forever to figure it out. I dunno why insert image doesn't work.

Col 23
04-30-2010, 02:08 AM
Hi Brooke
Im interested in how you go with Rituximab so keep us posted. I love hearing good news stories, so pleased it went well.
Col 23

Brooke
05-06-2010, 06:39 AM
I had my second infusion of Rituximab today. Went very well!! I started a little after 9am and was done a little before 2pm so shorter than last time.
Knock on wood, I do not have any side effects! I am feeling great, I was feeling pretty good going into it the first time so I guess we will see how I do once I get to lower my prednisone. I have five more weeks of 20mg pred then I get to taper 15mg for two weeks, then 10mg for two weeks, then 5mg for two weeks, and so on...

Sangye
05-06-2010, 06:49 AM
That's great, Brooke. Totally different from my experience after infusions! How much IV pred did they give you before the infusion?

The pred tapering plan you indicated sounds way too fast under 15 mg. Definitely too fast under 10mg. I'm sure others will chime in on that. How long have you been on pred, and what dose did you start on?

elephant
05-06-2010, 07:44 AM
Brooke, I chimed in on the prednisone taper. It is too fast, especially since you do have sinus involvement. I was told by my WG Specialist that the sinuses don't like it below 5 mg. So basically we have to taper very slow once you hit 10 mg. I am now tapering 1 mg every 6 weeks. I am now on 9 mg of Prednisone. I will be on 8 mg next week.
In October I was down to 5 mg and my sinus and ears got worse.....so I had to bump it up to 10 mg and I was on that for months....six weeks ago I started with 9 mg.
Hope I made sense.
Brooke, I am so glad you are doing well with the RTX!

Brooke
05-06-2010, 07:50 AM
Sangye - I only had benedryl and tylenol prior to the infusion. I did not have IV pred.
I am on 20 mg of pred - I have been on that since October 2009 - there were a few times they would bump my pred up for a week or so if I started feeling ill and also bumped up when in hospital sick.
I will ask dr about slowing down on the taper once I get to 15 mg.

Sangye
05-06-2010, 11:53 AM
Wow-- my Wegs doc said the lowest IV pred he'd go for rtx infusions is 80 mg. The typical dose is 100mg IV pred.

(Actually, IV pred is solumedrol which is stronger than oral pred. 100mg solumedrol is equivalent to 155 mg oral pred.)

Brooke
05-06-2010, 11:21 PM
Ok, I am pretty sure I did not have IV pred. There was another bag hanging by my Rituximab but they told me that was saline. What does the IV Pred do with the Rituxan?

Sangye
05-07-2010, 12:38 AM
They give the IV pred by injecting it straight into your IV, before starting the rtx. It keeps you from having an allergic reaction to the rtx. Without giving you something to prevent it, your body would identify the rtx as a foreign antibody and attack it. Pred and benadryl suppress the immune reaction so your body ignores the rtx.

My Wegs doc said he'd give me rtx without benadryl since I haven't reacted to it, but he can't give it without at least 80 mg pred. The infusion clinic nurses said that's the normal protocol. I had told them how bad I do with pred and they said it was unavoidable.

Brooke
05-07-2010, 01:02 AM
So wouldn't the benedryl help with an allergic reaction?
I don't know why I wasn't given the IV pred? I still take my 20 mg pill everyday - prior to the infusion.

Sangye
05-07-2010, 01:16 AM
Yes, the benadryl definitely helps. I was told it wasn't enough, though.

Sangye
05-07-2010, 01:24 AM
I've been trying to find the RAVE study protocol to see what doses of pred they used. I'm not able to read the full study--only abstracts. (RAVE is the big study from 2009 that compared ctx and rtx)

Luce
05-07-2010, 03:14 AM
I don't have IV Pred with my infusions, I apparently have hydrocortisone according to the nurses. I know this is also a steroid so assume it has similar effects. I also have antihistamines too which make me so sleepy but I'm too self conscious to fall asleep.

Sangye
05-07-2010, 10:03 AM
I think hydrocortisone is basically the same as pred. I'm not sure why they choose one over the other. Maybe one of our nurses can explain?

elephant
05-07-2010, 10:45 AM
Yes, it is basically the same.

Lola
05-07-2010, 02:08 PM
I'm not sure why they use different forms of steroids with the infusions. When I worked in the cardiac cath lab we often dosed patients with Benadryl, Zantac and either Solumedrol or Solucortef prior to using iodine based IV contrast - if they had an allergy to iodine or shellfish, which contain iodine. I think we used whichever medication the pharmacy had on our hospital formulary - translation: $$cheapest$$

For my first Rituxan infusion I got solumedrol, Benadryl and Tylenol. I developed a scratchy throat and then started feeling short of breath and had a slight fever - 99.7. For me, that was a raging fever. I foolishly tried to ignore the symptoms, but my husband noticed the breathing. The infusion was stopped immediately, and I had to be RE-DOSED with solumedrol and Benadryl. I took Zyrtec (antihistamine) and Zantac (type of antihistamine) for 3 days afterward.

Second infusion, I took Zyrtec one/day and Zantac twice daily (possibly the other way around. It's written down for next time) Day of infusion I received a different steroid - dexamethasone 20mg - (equivalent to 80mg prednisone). The Genentech rep told the nurses in infusion center that they were having much better results with dexamethasone at some of the other infusion centers.
The infusion went well. I also got Benadryl and Tylenol, but had to have my drug infused much slower, just for the sake of caution. That extra time cost $$, too - at $350/hour. Worth it, though, because I had no problems with the second one, and may have done well without all the extra pre-treatment. Zyrtec and Zantac were continued for a couple days after the infusions.

Sangye
05-07-2010, 11:42 PM
The nurses in the JH infusion clinic said they've learned to go very slowly with rtx and all the drugs they infuse that can cause allergic reactions. My first IV was the slowest, but the next 7 have been only slightly faster. They also emphasized the importance of reporting any odd symptoms. The pred gives me bad symptoms right away so I don't report it. I'd be reporting symptoms non-stop for 4-5 hours if I did.

Brooke
05-08-2010, 12:28 AM
The nurse said they never had anyone have an allergic reaction with the Rituximab. She said of course it could happen but they hadn't.
For my infusion they started very slow with the infusion and would speed up the dosing every 30 minutes.
I am a little worried as to why I didn't need or get iv steroids as it sounds like everyone else did? Maybe that would be for people going into the infusion that are worse off than myself?
I am glad I did not have a reaction!!

Sangye
05-08-2010, 01:45 AM
I don't know, Brooke. That's a question for your doctor. I see my Wegs doc in June and will try to remember to ask him.

Being in better or worse condition doesn't affect whether you're at risk for allergic reaction. It's not uncommon for someone to have an allergic reaction during the infusion that is stopped by giving more pred and benadryl. The infusion can continue.

However, my doc has one patient (out of about 100) who has developed an allergy to rtx after having used it for several years. Even giving him more pred and benadryl doesn't stop it, so he can't have it again. He can't take ctx again and is out of options. Both my doc and the infusion nurses look very sad when they talk about him, so I imagine there's nothing anyone can do.

Brooke, get the info about it from your doctor but please don't worry about it. I watched a woman go into full-blown anaphylaxis at the infusion clinic. It was clearly caused by her mind. She was there for an iron infusion and arrived extremely nervous and fearful. She even started crying with terror before they did anything. They did the "test" dose and she was fine. They ran the entire infusion (2 hrs or so) and she was fine. Once the nurses saw that she was okay, they gave her the paperwork with possible side effects They usually give it before the infusion, but they knew it would freak her out if she saw it beforehand. So she's sitting there reading it and says "You know, my feet are very warm." That's not a typical sign of anaphylaxis. Even so, the nurses told her she had to stay until it went away, just in case. Within minutes, she starts to turn red and complain of backache and difficulty breathing--both signs of anaphylaxis. She gets hysterical. Really hysterical. Her pulse and bp go through the roof. They give her IV pred and benadryl. She calms down and her vital signs return to normal. Her husband comes in and she starts telling him what happened. She starts totally reliving it emotionally. Then it happens again. They had to call the ER to come get her, since the infusion clinic is only allowed to give one rescue.

There is no way she'd have anaphylaxis after receiving an entire infusion, and no way it would stop and start again. It was completely driven by her mind. They later found out she had called the day before with questions and was completely hysterical with fear on the phone. I felt so bad for her. Clearly she has severe anxiety and it doesn't look like anyone is treating it.

Brooke
05-08-2010, 02:15 AM
Thanks Sangye~ I'm not worried too much about it now since I have 2 infusions down and just 2 more to go! I will be sure to ask my doctor about it though.
Thats too bad for the patient who develped an allergy to rtx and can't take ctx anymore. I hope there is something they can do!
That poor woman! I hope she was able to get some help with her anxiety, very scary to have anxiety.

pberggren1
05-08-2010, 09:14 AM
I may be going on Rituximab.

I e-mailed my Rheumy yesterday and she called back right away.

She agreed that I might be having flare and that she might up the Cellcept or get the Rituximab approved for insurance. I said either way get it approved for future use.

I also said I wanted to consult with one of the big Wegs specialists. She said she had talked with Gary Hoffman at the Cleveland Clinic before and said she would give him a call to get his opion on my case.

I am going to see my GP tonight at the hospital - he is the ER doc on call tonight. My sinus pain is getting worse and migrating to my right ear - the only ear I hear out of. Getting a little scary. I know that this may not be a bacterial infection and that all these infections and sinus problems over the last few months may be the Wegs creeping back in. My Rheumy somewhat agreed with that but was leery of upping the Cellecpt. She said she would also consult with an experienced Nephrologist in town and get back to me.

elephant
05-08-2010, 11:28 AM
Phil I am so glad you said something. Glad your Rheumy called and is going to call the wegeners specialist. I am hoping she is calling the Cleveland Clinic ASAP! Phil your on 3000 mg of cellcept that is considered a high dose.
Stay strong were here for you.

Sangye
05-08-2010, 11:37 AM
Good job, Phil. I think all these "infections" have been Wegs in disguise. My doc told me 3,000 mg Cellcept is the highest dose possible. More than that causes bone marrow failure. If you're flaring on 3,000mg Cellcept, it seems like you need a stronger drug. I'm happy to hear she's talking rtx.

DEE
05-08-2010, 02:20 PM
hope you get things sorted for you soon Phil fake care DEEx

pberggren1
05-09-2010, 05:01 AM
Thanks guys.

I am going to e-mail her again today with the info on Cellcept that it is already the highest dose and any more causes bone marrow failure. I didn't know this before. I will also give her Gary Hoffman's number in case she doesn't have it.

I have other bad news though.

We had a bad windstorm about 3 weeks ago and it blew some shingles off of our roof and it rained and leaked into our living room. We are having it fixed right now and there is a lot of black mould up there. The guys fixing it said they removed as much as they could and sprayed the rafters covered with mould with some chemical. We had to move to a friends house for about a week they think. Any insight into this would be greatly appreciated. We also get water into our basement from under the stairs and into our boiler room. I suspect there is mould in there as well. The guys working on the roof and living room said that the mould in the attic had to have been there for a few years.

Sangye
05-09-2010, 05:08 AM
Yikes. The one thing I know is you should get a contractor in who specializes in black mold. It's not as straightforward as it seems, and the cleanup can spread it around if not done carefully.

elephant
05-09-2010, 06:12 AM
Gosh Phil," when it rains it pours!" I am so sorry about that mold. As you know you need someone to inspect it and get it cleaned up ...like Sangye said.
Carol Langford is at the Cleveland Clinic too. Hang in there.

pberggren1
05-11-2010, 07:03 AM
Dad says they got it all cleaned up and should be albe to move back in by Wednesday.

I am not confident that any one could totally get rid of all the mould. I think the big thing to worry about is when the mould is disturbed when cleaning it up because it becomes air borne.

pberggren1
05-11-2010, 07:06 AM
I forgot to ask a couple of questions:

1. Does the rituximab come it doses like mg?

2. From what I gather the rituximab should be given slowly with benedryl and a fair amount of solumedrol the first few infusions?

3. What would happen if I wasn't flaring and was given the rituximab?

Brooke
05-11-2010, 11:20 PM
Hi Phil~
I am not sure if the Rituxan comes in doses? I think it goes by your weight?
They start off the infusion slow and increase it every 30 minutes if you are tolerating it ok. Thats how they have been doing it for me anyways.
I don't know what would happen if you were not having a flare? I went into the infusion feeling pretty good myself.

Sangye
05-11-2010, 11:55 PM
Phil, rtx dose is determined by weight. The infusion is always given slowly with "pre-meds" given before it begins. Like Brooke said, they speed it up as you go.

If your symptoms are Wegs but you're not in a full-blown flare, you'd probably feel better as the rtx would lessen any Wegs activity.

pberggren1
05-12-2010, 06:11 AM
Thanks Brooke and Sangye.

My Rheumy called yesterday afternoon and said that she put in the request to have the rtx fully covered. I hope it goes through as I am quite sure I am having a mild flare. I saw my GP today because I had a sinus x-ray yesterday. He said that it showed a little inflamation but nothing that would require antibiotics. He prescribed me a water based nasal steroid spray to use for a while. I forgot to ask him and my Rheumy about using Ibuprofen. I usually take 2 to 3 400mg tablets with a small glass of whiskey at bedtime to take the edge off the pain I am having in my sinuses and head so I can sleep. What do you guys think?

elephant
05-12-2010, 07:39 AM
Phil, whisky and ibuprofen are bad for your stomach, liver and kidney's. You should not take ibuprofen at all. Prednisone is suppose to reduce the inflammation, that is why people use ibuprofen.
What is your pain scale from 1- 10? 1- being the least amount of pain and 10 being the worst pain.
You might need a prescription for your pain.

pberggren1
05-13-2010, 07:04 AM
My pain comes and goes. Sometimes my pain would be a 7 or 8 on the scale. I didn't take any ibuprofen or whiskey last night. It seems to be getting slowly better.

I see my ENT tomorrow. I will get him to scope me and get his opinion on things.

I saw my GP yesterday and said that my X-ray of sinuses was much better but did show some inflamation so he prescribed me a water based nasal steroid spray I use at bedtime.

When I talked to my Rheumy on Monday she also said that she would rather I have an MRI of my naso-pharynx to reduce the overall radiation I might be exposed to long term. She said that she might also go for an MRI of my lungs instead of CT scan as well. She said I have already had alot of CT scans and doesn't want me getting any more exposure to radiation than neccessary.

Brooke
05-13-2010, 07:10 AM
Phil, I hope you get to feeling better. No fun to be in pain, I hope you get some relief soon.
I had my 3rd round of Rituxan today, it went really well. No side effects for me - I feel great.
I also walk 3 miles on Saturday!!!!!!! I have been feeling pretty good for about one month now, so I don't know if I would be able to tell if the Rituxan is working. I suppose I will know once I get to lower my steroids and I stay feeling good.
Good luck to you.

Brooke
05-13-2010, 07:11 AM
I walked 3 miles on Saturday.

elephant
05-13-2010, 07:14 AM
Glad you are getting the MRI, Phil if you pain is 7-8 that means you are in much pain, give your doctor the number ( pain scale) you might need something. Hoping you start to feel better.
Brooke- wow that is fantastic, your doing great! So glad the meds are working for you.

pberggren1
05-13-2010, 07:14 AM
Brooke, how much Rituxan and Solumedrol do you get when you go for your infusions? How much Benedryl do you get? How slowly do they increase the infusion rate of the Rituxan?

pberggren1
05-13-2010, 07:15 AM
Wow!!!!

3 miles all at once?

Brooke
05-13-2010, 07:30 AM
Thanks elephant and phil~
Yes, I did 3 miles at once and some spots were up hill!! It was for a breast cancer walk that I participated in and I signed up for the 1 1/2 mile walk but once I got there I decided to do the 3 mile walk with my family. I did really good, heavy breathing after I had gone up a small hill in the neighborhood but I kept at it and didn't have to stop to rest.
I really do feel like I am in remission! I know I would not have been able to do this a few months ago. I also have been having great energy, it is wonderful and no coughing at night (awesome feeling to just lay down and not worry about coughing alllll night long). I wake up early and do laundry and clean up the house a bit before work. I used to have my husband bring our 3 yr old son to daycare because I did not want to walk up the steps and be so out of breath, I drop him off and pick him up now, no big deal. It is amazing the things I am willing to do now, simple things like running errands are a breeze now.

Phil - I do not know the dose that I am on. They get to increase every 15-30 minutes - infusion lasts a little over 4 hours. They give me 2 tylenol and 1 benedryl pill ( I am not sure the dosage on those). I do not get any prednisone before, during, or after the infusion. I just have been taking my 20 mg that I take everyday. I get to start tapering that in a few weeks.

elephant
05-13-2010, 07:34 AM
Brooke, sounds like just what you needed. This is great news for people like us, if we need down the road. Yahoo for Brooke!

Sangye
05-13-2010, 08:24 AM
Brooke, it's terrific to hear how well you're doing. I hope you just get stronger and stronger. :)

Brooke
05-13-2010, 08:46 AM
Thanks, I hope I can continue saying this after the pred is tapered! That should give some hope!!

TBulger
05-13-2010, 09:34 AM
My rheumy started the process of getting me approved for Rituximab today. Celcept is not working and the damage to the kidneys continues. She expects an immediate rejection from the insurance company and is assembling things together for the appeal. From everything I've read on the forum there do not appear to be any downsides.

It is so wonderful to be able to turn to this great community to look for real world answers!

elephant
05-13-2010, 09:39 AM
Tbulger, I am so sorry that the cellcept didn't work for you. How much cellcept were you on and how long? Hoping you get that Rituximab ASAP!

Sangye
05-13-2010, 09:44 AM
I'm sorry Cellcept didn't work, too. Hopefully a round or two of rtx is all you need to get your kidneys to calm down.

Make sure they do an "expedited" appeal. The company has to make a decision within a day or two, as opposed to dragging it out. Your doctor's office may not know that, so pass it along to them. They'll be happy to have the info since it'll save them a lot of calls and faxes.

TBulger
05-13-2010, 10:49 AM
I've been at 2000mg of Celcept for around 9 months now. I've had three significant flares during that time and the kidney function takes a hit each time.

I was impressed at my doctor's attitude. She is preparing to take an aggressive stance with the insurance company and is one of those doctors that takes all of this personally. She spent almost three hours with me today going over all of the options.

elephant
05-13-2010, 11:58 AM
TBulger, I am glad to hear that. You don't want to lose your kidney. I had a kidney transplant, thank goodness it still works. I always have to check my urine. Fun! Keep us updated on the inusurance saga! Sounds like a great doctor who cares!

Doug
05-14-2010, 03:08 AM
I walked 3 miles on Saturday.

Way to go! Good for you!

TBulger
05-14-2010, 03:31 AM
I walked 3 miles on Saturday.

Congratulations! This is the kind of thing that keeps our hopes up. Maybe some day we can all take a long walk together.

Brooke
05-14-2010, 05:17 AM
Thanks!! I just can't wait until I can start tapering my steroids. I am so sick of my puffy face and everything else. I'm glad I'm feeling good though so I don't have too much to complain about. That would be nice if we could all take a long walk together with everyone feeling great.

elephant
05-14-2010, 05:48 AM
Yea, I'll walk with you. Walking our way to a full recovery!

jola57
05-15-2010, 02:28 AM
How wonderful, now the sun is out enjoy

Col 23
05-16-2010, 02:47 AM
Wow walked. Well done. Keep the good news stories coming.
Cheers Col 23

Brooke
05-19-2010, 02:02 AM
I know we have been hearing good news about Rituxan but of those of you that have had it, how many "rounds" have you had? Are you in remission now? What is your steroid dose?
Sangye - You had Rituxan last year and then another round recently, is that correct? But you said you are still not in remission? Does the Rituxan even seem to help you?

Lola
05-19-2010, 02:50 AM
Hi Brooke,

I had one round of Rituxan in January and expected it to be a miracle cure. It really wiped me out for a month. My family kept calling and asking me daily how I felt. I had to start lying to them, because they were driving me crazy. I didn't feel great.
I didn't start noticing a subtle difference until the 2 month mark. Looking at my journal helps, though, because I can track symptoms that have slowly disappeared.
I still don't think I have achieved remission. I am very, very slowly weaning my prednisone and Imuran - Dr.'s OK. I am now on 10mg Pred. and Imuran 50mg.
I am looking forward to my next round, due in July. I think that feeling stronger going into it will help me to enjoy the effects of Rituxan earlier. AT least, that is my hope.

Brooke
05-19-2010, 05:20 AM
Thanks Lola~
I was feeling good going into the infusions, tomorrow is my last one. I have not had any side effects from it. There is something going around here though, everyone seems to have a cough, runny green nose and cold symptoms. Of course I caught it and was feeling crappy all weekend. I started on a Z -Pak on Friday and it is helping. I was scared because I never know if it is a flare or if I caught something else. This time I believe it is a little virus or something yucky because the Zpak is helping a bit. Last time this happend, the zpak did not help and I ended up in the hospital.
How do you know you need another one in July? Did they do a blood test to check your b cells? Or you know because you still have symptoms and are still on the pred?

Sangye
05-19-2010, 07:11 AM
Brooke-- I don't think you can get rtx if you have an infection. Please call your rheumy and check before you show up for the infusion.

Lola, it sounds like you and I have the same reaction to rtx infusions. The month of treatments was like death. I started to feel better about 6 weeks after the first one, though by "better" iI mean "back to where I was before the rtx." At around the 2 month mark I started to feel a bit better and began tapering pred. I also started on several nutrition supplements, most of which are anti-inflammatory and anti-oxidant. They make a big difference. Without them I'm not able to taper the pred.

I did a round (4 wks) of rtx in October and another round in March. The October round stopped my lung hemorrhage and I didn't have the extreme fatigue (once I got over the rtx effects!). So it helped me but wasn't enough to put the Wegs fire completely out. My doc didn't think it would, so it wasn't a surprise that I needed a second round in March. Since the second round, I've been feeling a lot better. I still have some major issues, but they're mostly collateral damage and not active Wegs as far as I can tell.

If I can get off pred and continue to feel better, I'm going to call that remission. I've never had the remission conversation with a doc (ie am I in remission or not?) because it's been so obvious that I've always had active Wegs. But I think it's a gradual call-- after several months of good labs and no signs/symptoms of active Wegs, they call it remission.

I see my doc at the end of June. I should be off the pred by then and I think we'll have a decent idea about remission.

Lola, I thought the second round would be easier since I was stronger, too. It was actually much worse. The first infusion of round 2 felt like the third of round 1. I barely made it through. My doc said it's hit and miss with patients. Sometimes it means they can't take rtx. But he said I shouldn't need it again for a year, so neither of us is worrying about how much it weakens me. And of course, I may never need it again. Though I can't imagine it happening to me, many people go into lasting remission with rtx.

TBulger
06-13-2010, 03:35 AM
Sangye, Brooke and Lola,

Your posts on progress are really encouraging. I just got off the phone with the pharmaceutical company that supplies the retux for my insurance company. They wanted my approval that I would pay for the 20% of the drug that my insurance does not cover. They are calling on Monday to schedule delivery to my doctor. I will post the horror story of dealing with the insurance company in another post.

What recommendations do you have for someone getting ready to start?

Lola
06-13-2010, 04:28 AM
Gosh, TBulger, I don't know. I was so sick and apathetic by the time I got my first infusion that I was kind of a zombie. OK, here are some practical considerations:
1. Plan on taking time off work following at least your first infusion. 7 - 10 days for me, but I have a desk job, too.
2. Hydrate the day before, and morning of the procedure. No use making it difficult for the nurses to start your IV. They blew an IV site on 1/26/10, and the bruise is still there on my arm.
3. Take food to eat while you're infusing. Naturally, the IV steroid that I got made me hungry. Most normal people probably feel sleepy - not me! Just headachey and drowsy and hungry.

Good luck to you. Will you have a round of 2 infusions or 4? I can't remember.

TBulger
06-13-2010, 09:51 AM
Lola,

When I spoke to the pharmaceutical company it sounded like 4 rounds. I will speak with the doctor on Monday.

All I need is something else to make me hungry. My pred dose was pushed back up and I feel like all I do is eat or think of eating.

My employer has been very understanding through all of this. My boss has no problem with me working from home when I need and the group I manage have been great. I never have to worry about them taking advantage of the fact that I am not there.

Sangye
06-13-2010, 12:07 PM
I hope it goes well for you, TBulger. I agree with Lola's list, though I was flat out the entire month plus 2 more weeks. Not everyone has the same reaction though. Make sure someone else drives you, even if you discover you tolerate the treatments well.

TBulger
06-13-2010, 12:27 PM
Sangye

Drivers are not a problem. I don't yet know when it will take place and I already have three people that insist they are going to drive me. All my life I've been the one that has been the provider of assistance and it has been a little difficult to ask for or accept help.

I guess vacation plans for July will need to be canceled. I was looking forward to going home to Philadelphia and eating Pat's Steaks, soft pretzels, Tasty Kakes and Bookbinders Snapper soup. I know none of that is good for you but you don't live in the Philly area because you are looking for a healthy environment.

elephant
06-13-2010, 12:29 PM
Well TBulger soon enough you will get to enjoy all the Philadelphia stuff you crave. Hope the RTX works well for you. Cheers to good health soon and soft pretzels!

Brooke
06-14-2010, 11:53 PM
Hi Tbulger~
I did not have any side effects from the Rituxan. I also did not have IV Steroids while getting my infusions. I just had benedryl, and tylenol right before each infusion. I still took my regular meds of 20 mg steroid, zoloft, and bactrim. I also did one infusion once a week for four weeks.
I am now down to 15 mg steroids, I am feeling good still. I think the best part is not feeling sooo tired all the time and being able to breathe when I go up stairs.
Good luck to you!

pberggren1
06-15-2010, 07:54 PM
Hi Everyone:

I am stressing out a little and it is scaring me.

I have been going over so many things in my mind lately.

I have made another post earlier on the thread: Dr. Appt. Today about how I am determined to get down to the Mayo Clinic to see Dr. Specks. I am now having second thoughts about that. Like what if I really can't afford it and no one else is willing to help out with the costs. I really feel deep down now that I really need a Wegs Specialist as my Primary Care Doctor from now on.

I'm not sure how my current Rheumy will feel about this as I have already asked her to consult with Dr. Gary Hoffman and she was very willing and did so right away. I don't think I will get much support from her about going to Mayo. I don't think my government insurance will pay for the Mayo trip or any of the future trips. I feel this way because I think they will say that my current Rheumy has 12 Wegs patients and none of them are going to Mayo Clinic. But I distinctly remember what Sangye said in an earlier post that Dr. Seo said it is very important that all Wegs patients have a Wegs Specialist as their Primary Care Doctor.

I am also wondering about what Dr. Hoffman first said about my case. Here is the e-mail from my Rheumy about it:

I have HAD a reply from Dr. Hoffman. Helpful!! He thinks you have secondary infection and if we use the Rituxan we need to prove recurrence. With a biopsy- for proof. Need ent ASSESSMENT as well then.

This makes me think that Dr. Hoffman will only use Rituxan if it is confirmed by a biopsy. So my question is to all of the people out there who are and ever have been on Rituxan, why or what was the reason for your doc to put you on Rituxan. Or maybe worded better, Did your doc need biopsy proof, CT results, joint pain, fatigue, coughing up blood, etc. to put you on Rituxan.

My gut feeling is that I am having a flare and that only a Wegs Specialist like Dr. Specks will know for sure. I remember Sangye saying something about if I am not flaring then Rituxan is dangerous. But how else can we know for sure if I am flaring?

I am going through a little bit of denial right now. I am scared, frustrated, anxious, nervous, sad, angry, and probably other things I can't think of right now.

Please pray for me and respond to my question about the Rituxan use.

Thanks All,
Phil

Jack
06-15-2010, 09:03 PM
Oh Phil, my heart goes out to you! Have you had this discussion with your current doc. and voiced all these concerns? She sounds reasonably open to suggestions from what you say.
I fully understand your hesitation over a visit to the Mayo. Financial considerations must be taken into account if there is any alternative. They are important.
Unfortunately I cant help you with anything to do with Rituxan because I have no first hand knowledge, but I'm sure some of the other members will be along soon with their input.
Wishing you all the best!

pberggren1
06-15-2010, 09:09 PM
Thank You Jack. Just knowing that you are there thinking about me helps me a lot. Maybe if I don't hear from my Rheumy by Wednesday I will send her an e-mail about going to Mayo.

DEE
06-15-2010, 09:10 PM
i cant help much either Phil but hang in there thinkng of you hope you get sorted soon DEEx

Brooke
06-15-2010, 11:14 PM
Hi Phil~ Hang in there!
My doctor at Mayo decided I needed to be on Rituxan because my sinuses were not getting any better being on the Methotrexate. My breathing tests had improved a little bit but that was about it, still scarring and crusting and inflamed sinuses.
They did not need another biopsy to determine that I needed the Rituxan. I saw an ENT doc and by his report and what he saw they determined I should be on Rituxan.
Hope this helps a little bit and I hope you get things figured out.
I will say prayers as well.

TBulger
06-15-2010, 11:51 PM
Phil

My insurance company authorized (with all of the legal outs an insurance company can muster) the start of Rituxan based on the kidney biopsy confirming diagnosis, use of Cellcept for an extended period of time, multiple flares during Cellcept use and a second biopsy showing continued active wegs and continued deterioration of the kidney function.

From the doctors perspective (all four that see me), they were convinced that the Cellcept was not working and all agreed that Rituxan was a better choice than Cytoxan.

My doctor consults with someone, but I'm not sure of the name. I have often asked myself if a trip would be beneficial, but i'm sure my insurance company would be less than cooperative. The monetary costs of this condition are burdensome and thus we are forced to make difficult decisions. Mine has been to ride it out with my local assistance.

My decision to go forward with the Rituxan was based on the fact that I have been steadily declining. I have always been an extremely active person. I have been a Boy Scout leader for more than 20 years and camped, hiked or backpacked at least twice a month. My youngest daughter is autistic and I have been active in a host of support and advocacy organizations. My remaining time has been devoted to church and political activities. I am now at the point that most nights I come home from work so exhausted that flop on the couch for the evening. I have gone from living life to observing life. I know there is a risk, but continued decline is no loner an option that I will consider.

I pray for all of us every day.

pberggren1
06-15-2010, 11:53 PM
I just got off the phone with Robin at the Mayo Clinic - Pulmonary and Critical Care, where Dr. Specks is. She said that Dr. Specks is booking for the end of July and into August. I told her a little of my history and she said I should see one of the Wegs ENTs as well. She said she would book for the same day or next day at worst. It would cost about 500 dollars to see each doctor and I could have all of the tests: blood work, chest x-ray, urinalysis, CT scan of chest and sinus done at home here to save costs. I told her I was waiting to here back from my Rheumy but would call her back to let her know what I was going to do. I am leaning very strongly to making that appointment for the end of July or August.

Just talking to someone at the Mayo Clinic and finding out costs and procedures has relieved some of my tension and stress.

Thanks Brooke and everyone else,
Phil

Sangye
06-16-2010, 12:12 AM
Aww, Phil I can't imagine how hard it is to be grappling with this. I think if you can gather the money to see Dr Specks and a Mayo ENT then you should go for it. One thousand dollars is a lot of money, but if it saves your life, then it's small potatoes. I'm sure your rheumy will understand, and I bet she'll even be a little relieved. No matter how well she's communicating with Dr Hoffman, there's just no substitute for seeing a Wegs doc in person. Even if you only go once or twice a year, it gives you a direct connection to Dr Specks. You can ask him your questions and keep him apprised of your situation. He can oversee your care via your rheumy.

I think it was very smart of you to check into the costs and availability at Mayo. Much easier to make decisions when you have all the facts. Take care of yourself, Phil. :)

pberggren1
06-16-2010, 12:15 AM
Thank You TBulger. When were you diagnosed again? Where are you from?

Thanks for your support, prayers, concern, and info.

I may consider trying to do a fund raiser if my government insurance will not cover it, which I am sure they will not.

My Mom says that one of the Lawyers in the office she works in has a plane. He is retired now I guess. She says she is going to ask him if he could fly me down there.

Sangye
06-16-2010, 12:19 AM
When I was first dx'ed my friends did a few fundraisers for me. They were amazing. Each one paid my mortgage and one or two other bills. I have lots of fundraising ideas if you want. Maybe you could start a new thread for it, since I bet lots of people will have great ideas.

pberggren1
06-16-2010, 12:30 AM
Sangye, thank you for your support. I would love to hear your fundraising ideas. I think if I saw Dr. Specks once I would want him as my Primary Care Doctor from now on. I could even meet Duane Hart that lives in Rochester. That would be incredible. That is amazing about your friends doing fundraising that would pay your mortgage and some other bills. My youngest brother, John, is a musical prodigy. He performs locally and placed third in a talent competition. He plays the guitar and sings. He has written many songs. He plays entirely by ear. He can learn a new song in about 10 minutes. He does everything from the Beatles to Billy Joel to Bob Dylan. I think I will see if he and some others can do a benefit concert for me. And then keep it as a yearly thing to pay for future costs.

pberggren1
06-16-2010, 03:15 PM
I got another e-mail from my Rheumy. I am not too impressed. She obviously doesn't like the idea of going to Mayo. She seems to think that it is going to cost me way too much. Obviously I would have extensive travellers insurance with heavy medical while I am down there, and I wouldn't be down there very long. My parents seem a little excited as well at the possibility of me going down there. They are going to get their passports soon. They said they want to drive me there. It is about a 2 day drive from where I live. I think it is about 1400 to 1500 miles. So it doesn't look like I would get any help from my Rheumy to get the goveernment insurance to pay for the visit to Mayo.

Anyway here is her response to one of my e-mails:

Dear Phil,
Just received your note about the ECHO and that can be done in Swift Current and if there looks like a problem then in Saskatoon. I did not send the CT to Dr. Hoffman but I will contact him again and send the report and see if he would like the CT as well. Usually they depend on a radiologist to read CT’s .
My researcher in the office has a son who works in the States who was in Hospital for 20 hours and had a CT scan. This was $11,000 and the entire stay was $49,980. Thank goodness he has insurance with his company which covered 80%.
I appreciate you keeping in touch.
Dr. M

From: phil berggren [mailto:[email protected]]
Sent: June-12-10 4:19 PM
To: [email protected]
Subject: PHIL BERGGREN



Hi Dr. Markland:

I am still not convinced that Wegener's is not smoldering away inside me. Maybe if it is bacterial infection in my sinus and lungs the Avelox will take care of it.

Have you heard back from Dr. Hoffman yet about the CT report?

Maybe I do need to have this sinus surgery done that Dr. Mia does and then we can biopsy and culture what is inside my maxillary sinus. I am quite sure that is the only sinus that is accessable with this type of surgery.

I also found out some bad news. I was conversing with a fellow Weggie in Wisconsin. He was 38 and diagnosed in March of this year. His wife called me Thursday evening to say that he had passed away - heart attack. She got the autopsy results and they said the WG turned his heart to jelly. So now this worries Thank goodneme a little. I don't know if I have ever had an Echo-Cardiogram done but I want regular ones done from now on and on the same machine to compare the results over time.

Thanks again,
Phil Berggren

So as you guys can see my Rheumy is not directly answering all of my questions. I think I should just go down to Mayo anyway no matter what she says. What do you guys think?

pberggren1
06-16-2010, 05:08 PM
Well, I just talked to my best friend and he says I should definitely go for it. I will call Robin tomorrow morning to book the appointment with Dr. Specks and the ENT for the end of August. The dates she gave me yesterday were July 27, August 5 and 24 that he would be available. I figure the end of August gives me enough time to raise some funds to go down there with.

Jack
06-16-2010, 05:35 PM
Not exactly sure of the sinus surgery proposed in your own case, but I had an operation called a Bilateral (both sides) Caldwell Luc. This is a fairly nasty operation to remove the sinus linings. It was done when my ENT consultant still thought that I had a sinus infection that was not responding to anti-biotics, but was of course completely unnecessary! :(

The operation appeared to be partly successful at the time and my symptoms were reduced for some time until I had a major relapse and nearly died. It was only then that Wegener's was diagnosed. This was confirmed in my case by both sinus and kidney biopsies.

I would hate for you to go through an operation like mine for no good reason.

Treatment in my own case was with massive doses of I.V. steroids and Cyclophosphamide which relieved my symptoms within days (unfortunately too late for my kidneys and lungs!). It sounds like you may need an alternative therapy.

pberggren1
06-16-2010, 06:40 PM
Thank you Jack for your concern. I will definitely get many second opinions about any sinus surgery any doc might suggest. If this local doc wants to do any surgery I will insist that he consult Dr. Lebovicks and the Mayo ENT I plan on seeing.

I don't think that my current ENT was talking about removing the sinus lining of the maxillary. The way he explained it it is more of an exploratory surgery and then maybe they could take a biopsy sample and possibly drain or remove any pus.

My ENT said that only the Maxillary sinus is accessable. Do think that is true Jack. What about the frontal, ethmoid, and sphenoids?

Jack
06-16-2010, 07:35 PM
Yes, it is the maxillary sinus that they access.
Prior to the Caldwell Luc operation, I had a series of smaller ops to wash out and drain my sinuses, perhaps this is what they have in mind for you? This was quite minor surgery under local anesthetic. Oddly enough, in my case, these operations always resulted in a worsening of my symptoms for a short period. Not sure why.

pberggren1
06-16-2010, 08:09 PM
Yes, maybe it is a wash out and drain he is refering to. Though he did say that I would be under general anesthetic for about 4 hours. That doesn't sound too simple to me.

Did your symptoms improve after they worsened for a short time, Jack?

pberggren1
06-16-2010, 08:15 PM
I just figured out the total milage from where I live in Swift Current, Saskatchewn to Rochester, Minnesota. It is 950 miles or 1530km. Two days of driving for sure. I am getting more excited now.

Jack
06-16-2010, 08:53 PM
Symptoms did not improve with washout in my case which is why it was decided that something more radical was required. An accurate diagnosis would have been better! At the time, I was showing lots of what I now know are typical Wegener's symptoms, but it was a little known disease 25 years ago.

4 hours in surgery sounds like quite a lot and certainly more than would be required for a simple wash out. If it does turn out to be a Caldwell Luc operation that is being proposed, I would think long and hard about it. I'm afraid it is not very pleasant!

Sangye
06-17-2010, 12:12 AM
Phil, I think your rheumy feels obligated to make sure you appreciate the medical costs of going to Mayo. Remember, she doesn't know how much info you've gathered about it and might think this is just a spontaneous plan. Her email doesn't give the impression that she's opposed to you getting care at Mayo, though. I think you should ask her directly if she could help you appeal for government assistance. It may not even be a possibility. Have you ever heard of someone getting it?

I'm glad you asked about getting echos (but upset she wasn't already doing them). They don't need to be done on the same machine. The reason for doing them in the same facility each time is because they have your prior ones on hand for immediate comparison. If you have to get them done at different facilities, just bring copies of the old reports so they can compare. It's not a big deal. The big deal is NOT doing them on an annual basis.

If you can stand to wait, it might be best for you to wait until you see a Mayo ENT to do any sinus surgeries. Like Jack said, you don't want to make more trouble for yourself. I don't like the idea of you deciding on which procedure only by asking people. You need a competent ENT to tell you what are the best options based on your case. Then you can make an informed decision about what to do.

pberggren1
06-17-2010, 02:41 AM
Thank you Sangye.

I will ask my Rheumy to help me get the government insurance to cover the Mayo trip. I have known other people who have gone to Mayo and only one had part of the cost covered. So I am not too optimistic about that.

I am going to ask my GP to do an echo. I will bring that with me to Mayo. When I spoke to Robin again this morning trying to gather some more info she said it is very rare that Weggies have heart problems. I said I would bring the echo report anyway just to be safe.

I will definitely wait to see what the Mayo ENT has to say.

Thanks again Sangye.

gwenllian111
06-18-2010, 06:06 AM
1.) Why did you have to take this medication?

Because I could not tolerate other immunosuppression drugs. Aizothioprine, cellcept, methotrex, etc made me neutropenic, and I developed a severe allergy to cyclophosphamide which included liver failure, inflammed heart and lungs, high temp, vomiting...etc. So my Rheumy started Ritix, which, 4 years ago, was quite a new treatment but I had little other option by this point.
2.) Did you fail at another drug first?
As above. :-)
3.) What medications were you on when you started Rituximab?
Pred 40mg
4.) What medications were you able to stop once you started Rituximab?
Pred
5.) How long before you were in remission after taking the Rituximab?
9 months
6.) How did it make you feel?
Great. Induced remission, hadn't felt so good for years.
7.) What condition were you in prior to starting Rituximab?
Optic Neuritis, tracheal stenosis, infalmmed vagus nerve, neutropenia
8.) How many "rounds" of Rituximab did you have to do?
depends. first time, a round of 4, now, it tends to be two infuswions every 6 months.
9.) How long does the infusion take?
6 hours

QUOTE]

elephant
06-18-2010, 07:56 AM
Gwen great question/answers! Something is going to work for you. Hang in there.

pberggren1
06-18-2010, 10:34 AM
Yuck!

I have water coming in the basement in a different spot now by the bottom of the stairs. It is making the carpet quite wet in that area.

And then to top things off I have been killing ants in the house the last few weeks and have found what looks like to be a colony underneath the stairs. Any suggestions?

elephant
06-18-2010, 12:18 PM
Sorry Phil, how aweful! We had to call terminex and they took care of the ants. We bought everything at the store that was suppose to kill aunts but it didn't work. Getting water in the basement is a nightmare. Are your gutters cleaned out? sometimes if we didn't clean out the gutters the water would come in the basement.

Hammy8241
06-18-2010, 03:38 PM
Sorry Phil, how aweful! We had to call terminex and they took care of the ants. We bought everything at the store that was suppose to kill aunts but it didn't work. Getting water in the basement is a nightmare. Are your gutters cleaned out? sometimes if we didn't clean out the gutters the water would come in the basement.


If we did this in the UK we'd be charged with pre-meditated murder:)

pberggren1
06-18-2010, 03:47 PM
You're kidding!

Hammy8241
06-18-2010, 04:09 PM
You're kidding!

No Phil, trying to kill aunts or even uncles is certainly frowned upon:D

elephant
06-18-2010, 05:02 PM
LOL! Yea, OOPS.....I meant ANTS. Hope you got a giggle out of that. :)

Sangye
06-19-2010, 12:37 AM
LOL-- It gave me a good giggle. :D

Lightwarrior
06-20-2010, 12:30 PM
LOL, thanks for the laugh elephant

BonnieB
06-24-2010, 12:45 PM
Hello to all- I have been out of touch for a while, but checking in on everyone from time to time. My 18 year old was devastated by Wegener's suddenly last ear, failed all tx, was almost dead when he got rituxan in late a
ugust last year. Since then he has steadily improved- he even LOOKS like himself, his voice is normal again and he enrolled in college. 2 weeks ago his monthly lab showed the reappearance of pr3- ancas. He is now going through the rituxan weekly infusions again. Aside of blood pressure meds he takes no other meds - his choice. But every minor proceedure- dental work, ingrown toenail, etc causes a secondary infection- so we've learned to take antibotics before/after. Anybody else on no other meds after inducing remission?

Jack
06-24-2010, 05:36 PM
Glad to hear that he is now making good progress, but I would have thought that a permanent dose of an antibiotic such as Bactrim would be wise. You can die from secondary infections!

Sangye
06-25-2010, 12:39 AM
Hi Bonnie, so nice to hear from you. I just did my second round of rtx in March (first was last October). My Wegs doc said yesterday that I don't need to be on another immunosuppressant before repeating the rtx in a year. His plan is to do rtx annually with nothing in-between.

I'm on a very low dose of pred (under 4mg) and have to stay on it for several more months before trying to taper again.

elephant
06-25-2010, 03:49 AM
Sangye how are you feeling today?

BonnieB
06-25-2010, 08:56 PM
Jack, you are absolutely right- he IS on bactrim 3 x a week and blood pressure meds- just not on any cellcept, prednisone, etc. Once he finishes these 4 infusions, I am thinking about going up to Mayo (North) for a consult with Spechts or one of his colleagues about what the ongoing plan should be- Sangyre is on an annual infusion plan- why? Is that based on your doc's experience with this? Why not 9 months when your B- cells will be back? Seems there is no routine protocol, all this is so new,previous experience has been only with small #s of patients- but Sangye's disease seems so vicious I would worry about her over 12 long months... Keep us posted!

Sangye
06-25-2010, 11:54 PM
Bonnie, there are no set protocols with Wegs. To determine what drugs and dosages to use for each of us, each Wegs docs combines his/her personal experience of seeing hundreds of Weggies plus discussions with other Wegs specialists, plus research. I see Dr Seo every 3 months and every single time he has new info on rtx to share and base his decisions on. If you see a non-Wegs specialist, all they have is the published research. It's always trial and error treating Wegs, but it's much moreso when a doc is operating with limited info. Since the big rtx study last year, many more Weggies are being put on rtx and the specialists have more info to compare as we show up for follow-up visits.

No decision about a course of treatment is written in stone. Dr Seo feels I'll be okay without more rtx for another year, but I still need to see him every 3 months and continue to report any signs of trouble. He's watching out for me, don't worry.

B cells return anywhere from 6-12 months, but that doesn't always mean the disease activity returns with them. Some Weggies need rtx every 4 months, others have it once and go into a lasting remission. And everything in-between!

Please bring your son to Mayo for a solid evaluation.

BonnieB
06-26-2010, 12:29 PM
Good advice, sangye, Thanks- spoke to our rheum in mayo- scotsdale today-, echoing what you said mainly,be vigilant-so I will probably call up and see what's available before the winter.
Did your anca's come back or did you get treated empirically?

Sangye
06-26-2010, 11:49 PM
No doctor should be using ANCA's to measure disease activity. Research has shown them to be unreliable for anything other than establishing initial diagnosis. Very few people have reliable ANCAs that actually reflect disease activity. My rheumy at Mayo AZ was constantly freaked out about my ever-rising ANCA (it was sky-high to begin with), even though I wasn't getting sicker. The Wegs was not in remission, but it was smoldering at a steady level. He always wanted to put me back on major doses of pred, and was upset that I refused. It was a constant threat and he'd tell me he wouldn't continue to treat me if I didn't. I didn't have any other options, so I constantly talked him into keeping me.

When I got to JHU Dr Seo said going back on high dose pred would have been ridiculous, and he didn't even change my treatment (CellCept at the time). He doesn't even order the ANCA on me or most patients.

As far as rtx, he had planned to do another round in 6 months. My lungs were hemorrhaging going into the first round, and he didn't think one round would be enough to stop it and get the disease under good control. That's exactly what happened. The first round stopped the hemorrhaging but many of the other signs of disease persisted (though they were milder than ever before). I asked to do the 2nd round a month early because I felt the Wegs creeping up again--more rashes, increased ankle swelling, joint pain. Those are my 100% accurate indicators of Wegs activity.

LisaMarie
06-27-2010, 02:28 PM
I have been denied rituxen from both insurance and can get no help from genentech so i am appealing their decision. My doc says rituxen is what i need but will me on cyotoxin or however u spell it if he has to....i have been crying on and off for 2 days..i am so mad and scared and 20 mg of less does not help..does anyone have any suggestions how i can convince them to give me therituxen....i just wanna scream ...any advise whould be so appreciated ....my mom keeps trying to convince me that WG is not so scarey or that big of a deal ..she believes more people are in remission and live a normal life....she means well i guess...but i am still scared and mad...my husband doesn't't know what to say...he won't worry til he has to....he loves to say it'll all work out....thanks for letting me vent

Nancy
06-27-2010, 05:11 PM
Hi Lisa Marie -
well we are in the same boat... They denied me the Rituximab as well.... Gosh bless my soul... the one year that I work a special schedule, additional hours on another job, divorce alimony, etc... and I earned too much money... They will automatically appeal it for me... but even though I have not been able to earn money since early april due to inability to work seems to have no effect on their decision... Oh well... we will have to see...
I understand your mother trying to say that Wegs is not that "big of a deal".... mom's have to cope... My mother will not say it to me, but my dad says that my mother's biggest fear is that I will die first.... I promised that I would work on that... the prevention of... I do believe in reincarnation, so not too traumatic of a thought - but I would like to have the sinus pain/discomfort stop. I also recently had a short-term bout with central vision loss as my Wegs doc thinks that it is attacking my retinal arteries.... I just have to believe that it will work out... I would like to know what the cost of the RTX is without genetech's help.... Anybody know? Good Luck with getting the RTX - I wish you the best luck - keep in touch!

LisaMarie
06-27-2010, 10:54 PM
one post shows $40,000 for rituxen no sure if that was per dose or per year

elephant
06-27-2010, 10:59 PM
Why are they dening the RTX? I have been off this site for a few days...I do remember Brooke having a hard time getting RtX and finally got insurance to pay for it. Hope it all works out for you two!

Sangye
06-28-2010, 12:09 AM
Nancy and LisaMarie, rtx costs about $10,000 per dose. Depending on the protocol, one round would be either $20,000 or $40,000.

Check the this entire thread and also "Rituximab Round Two." I'd given Brooke specific advice about how to get your insurance to authorize it. Check there first. I'm happy to repeat it if you can't find it. I can't accept that you don't have access to this important drug.

JanW
06-28-2010, 12:57 AM
Lisa Marie -- I am wondering how much your doctor is willing to get involved in appealing your original insurance company's decision all the way to the medical director/final authority at the company? Does your insurance require you to fail on another medication first. What was the exact reason for the denial? Getting a different answer from the drug company could potentially be trickier since that is based on your income presumably. I have found that if you are really willing to go to the mat with insurance companies that they will give in. The last thing you want to do when you are sick, I know, but definitely worth it in your case.

me2
06-28-2010, 03:12 AM
I think you are right JanW that insurance companys can be worked on to pay for coverage.
I have been denied treatment by my insurance company also. I found a valuable book by Laurie Todd "The Insurance Warrior". Here is her website: The Insurance Warrior (http://www.theinsurancewarrior.com/watchlaurie.html)

She battled with an insurance company to get proper treatment for a very difficult cancer surgery procedure. Then she went on to help others understand how these companys think and how to talk to them to be persuasive. She has a free newsletter that is good too.
I fought my insurance company tooth and nail for coverage a couple of years ago and lost. However, I must have scared the hospital with my thoroughness and tenacity because they tossed the bill (about $35,000) without even a discussion. I called them months later to see why they were not billing me anything for the treatment. I was told they were writing it off. I didn't question things too much further . ha

I highly recomend Lauries book to those who are having trouble with getting their insurance to cover treatment. Check if your library has it or try Alibris online for used copies , or buy it from her website.

Doug
06-28-2010, 04:00 AM
I think you are right JanW that insurance companys can be worked on to pay for coverage.
I have been denied treatment by my insurance company also. I found a valuable book by Laurie Todd "The Insurance Warrior". Here is her website: The Insurance Warrior (http://www.theinsurancewarrior.com/watchlaurie.html)

She battled with an insurance company to get proper treatment for a very difficult cancer surgery procedure. Then she went on to help others understand how these companys think and how to talk to them to be persuasive. She has a free newsletter that is good too.
I fought my insurance company tooth and nail for coverage a couple of years ago and lost. However, I must have scared the hospital with my thoroughness and tenacity because they tossed the bill (about $35,000) without even a discussion. I called them months later to see why they were not billing me anything for the treatment. I was told they were writing it off. I didn't question things too much further . ha

I highly recomend Lauries book to those who are having trouble with getting their insurance to cover treatment. Check if your library has it or try Alibris online for used copies , or buy it from her website.

Wow! Excellent information, me2! I've viewed two of the tapes, and have added this to my "Favorites" tab for future reference. I'll check out the book, too,. I think her approach is dead on, and reflects an underestanding of business and business practices that most people don't have. It is about the money,so you have to hit the right people with the right information. She defines that very well!

LisaMarie
06-29-2010, 05:13 AM
well i just got off the phone with Genentech and due to my income being slightly higher than allowed ($1025) i am not eligible for any help from them....I will still fight the insurance company any if I understand correctly I have to start on Cytoxan prove it is not working then I can appeal for the rituxan...i have a my pcp and the rhuem doc that will write letters.....so all i can do is wait...i just finished a book called emotional intelligence 2.0 and it has some good info...one blimp is about getting mad with purpose...so i guess i am made and have a purpose so watch out insurance and drug companies..I wanna live and want the best treatment for me!~!!!!...I plan on getting the book recommended..Insurance warrior..once I have so extra pocket change...thanks for the support and advise ...will keep ya ll posted

Sangye
06-29-2010, 05:24 AM
Lisa Marie, what reason did the insurance company give for denying rtx?

JanW
06-29-2010, 05:51 AM
Sangye -- looks like she would have to 'fail' on ctx in order to start on rtx, which is not uncommon with this drug (or I'm sure new drugs for any old disease). In fact, one of the first things I did upon being diagnosed is find out whether this was true of my own insurer.

I have to believe that if your doctor can make a persuasive enough case why ctx is contraindicated in your case, you can get the rtx approved. The trick is that if you have never been on either, he can't really say that ctx won't work. Yes, more toxic is a reason not to use it, but not always one that is persuasive enough for the insurance companies.

LisaMarie
06-29-2010, 06:10 AM
Rituxen is off label use and bothe aetnea and blue cross blue shield denied me...but I am not giving up...I just get so amazed how cols insurance companies can be....I just wanna ask what would you do if it was you or your family memeber ...you would want the best safest care...in the long run the toxic effects of cytoxan will cost way more than the rituxen ...atleast if I did the math right....sometimes i am a bit foggy on the pred....and am feeling that 3pm nap trying to kick in....wonder if my boss would care if I snoozed on my 15 minute break.....well better get back to work.....talk to ya all soon ...i am grateful to eat of u for all your support....It has been a GOd send for me

TBulger
06-29-2010, 06:41 AM
I'm on United Health Care and was denied multiple times. Their reason was that Rituxan is not part of the approved protocol for Wegs. My doctor kept submitting appeals and I spent hours on the phone with UHC trying to untangle their process. The doctor did not have the staff to spend the time on the phone looking for answers as the insurance company has no incentive to make it easy.

Keep fighting. My doctor showed that I had not responded to Cellcept or Methotrexate and that my kidney and lung functions were deteriorating at a rate that made the jump to Rituxan my only hope. My phone calls did help to eliminate a few rounds of letters.

UHC will now cover it at 80% but I'm very close to reaching my out-of-pocket maximums for the year and then everything will be covered by insurance.

It seems to me that it would be wise for Genentech to provide some assistance in getting insurance companies to approve this.

LisaMarie
06-29-2010, 09:49 AM
I agree it would be in Genentech best interest to have the drug approved for WG it seems to be a vicious cycle. I will keep u all informed . I am not really looking forward to starting cytoxan. I understand it can have some serious side effects that can be long term ...ugh..

BonnieB
06-29-2010, 11:07 AM
I took a letter I wrote about the reasons why rituxan was the optimal drug for my son- named several studies, etc. I took it to all my son's dr's- (I wrote it as if they had written it- using thier names and addresses on the letter) and asked them to sign it- then faxed the insurance company all the letters, asking for an appeal- and they paid it- the second time they said we didn't need pre- approval. Keep bombarding the insurance co- don't let up, volume and evidence of its usefulness are key. We have aetna , too but they have lots of different policies, and coverage benefits.

Sangye
06-29-2010, 11:41 AM
Lisa Marie, aha! If they're denying it because it's off-label, that's the easiest obstacle to get around. There is NO drug--not even pred or ctx-- that is FDA-approved for Wegs. So EVERY drug is used off-label.

I got into a tangle with my old insurance company 3 yrs ago when they denied CellCept for the same reason. After tons of doctor letters, etc... I finally realized this. When I told them that, they approved it on the spot. Before you make yourself crazy with paperwork, call them and tell them this. Speak to a supervisor.

LisaMarie
06-29-2010, 12:29 PM
Thank I will try it tomorrow....and start drafting letters for the doctors to sign...I already have a file folder full of data and everyone I have spoken to....I definately have my work cut out for me...now if my brain would right ...i hate this foggy loss of words feeling....not too professional sounding when u r trying to explain core measures

elephant
06-29-2010, 01:38 PM
Lisamarie let us know how it went with the insurance all tomorrow. I am rooting for you!

LisaMarie
06-30-2010, 11:52 AM
Ok been on the phone most of the day with both insurances....Blue cross Blue shield is easier to deal with then Aetna....starting appeal process with both ....still waiting for the rheum doctor office to return my call...this is 2 days since i left a message for a return call....still trying to see Dr Abdou as a primary from the rheum office ......I hate this hurry up and wait stuff....actually slept in today....amazing how tired I still feel...did find out that there is a expertimental drug treatment for rituxen in france for WG.....too bad I don't live in france...if any of you do they are recruiting at this time....it is on the vas foundation web page under trials.....have a great night

Sangye
06-30-2010, 12:06 PM
Lisa Marie, when you talk to your insurance, make sure they know rtx is not experimental. It's been in use for Non-Hodgkin's Lymphoma for many years and is also FDA-approved for RA. Correct them if they say "It's experimental for Wegs." That isn't true. There is ample research showing it's as effective as ctx--the gold standard. It's an FDA-approved drug being used off-label routinely to treat Wegs.

Sangye
06-30-2010, 12:08 PM
This is for you, Lisa Marie. Go get 'em!

http://icanhascheezburger.files.wordpress.com/2010/06/funny-pictures-kitten-has-attitude.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

LisaMarie
06-30-2010, 12:20 PM
Thanks for the support ...love the kitty....gonna get to bed ..gotta work early in the morning....Thank God I can still work.....

elephant
07-01-2010, 02:10 AM
You go LisaMarie, doing a great job and love your spirit!

jola57
07-07-2010, 06:56 PM
Keep that spirit LisaMarie

Carly Hedge
07-13-2010, 09:05 AM
I had my first round of Rituximab- Nov. 24th and finished about a week before X-mas. My first round- the only side effect was a hot flash that lasted maybe 10 seconds each time they upped my dose and a slight sore throat.
I am now on my second round of Rituximab. My rounds are once a week for 4 weeks every 6 months. It's the only drug that is working for me that hasn't caused my liver to fail.
I started on cytoxan but was not even on that for a month before my liver was failing. Started rituximab but to try to be safe then sorry after, we (my rheum and I ) put me on methotrexate but my liver failed again so rituximab is the only thing working for me.
The second round is going alot better- no side effects like the hot flashes or itchy throat. Just tired but that could be from the benadryl that they give me as a pre-med. :)
Also I am at my Dr.'s office from 8:30 am til about 1pm but the 1 dose is always the longest because they go slower. :)

Nancy
07-19-2010, 03:29 PM
Hi everybody -
I recieved good news on the Med.... Genetech approved coverage of the medication for me.. I am not sure if that is just the initial doses or for the duration - whatever that may be... I am continuing to try to work - I found 2 part-time positions for the same company so am able to work 3 days a week and cover expenses and I remain on my COBRA insurance - still have about a year of that.... I am not certain when I will be able to get the initial dose - but cross your fingers.... No more short term vision loss issues - but man....heafaches today - just about made me look for something for a lobotomy...
Hey Lisa Marie - how are things with you? Any Luck with seeing Dr Abdou? How is your battle for the Ritux going? I have been thinking about you and your issues. I read your note on Cytoxan... It is the med that I have used most often over the past 14+ years... So far...I cannot say that I have had any "real" issues aside from knowing that taking this med is the only choice for treatment as Methotrexate did nothing and we discussed cellcept - but it seemed a step backward and never tried it.
The biggest effects that I have had is the long-term prednisone.... It is starting to make me feel like a "freak". I have always been happy with whom I am, happy with what I do, who I am... I have to say - looking at people, I am having twinges of envy - VERY strange.... to look normal... I just need to be patient and realize that time changes everything with enough patience.... I have to remember to be careful what I ask for .... ;-)

LisaMarie
07-19-2010, 11:26 PM
Hi everybody -
I recieved good news on the Med.... Genetech approved coverage of the medication for me.. I am not sure if that is just the initial doses or for the duration - whatever that may be... I am continuing to try to work - I found 2 part-time positions for the same company so am able to work 3 days a week and cover expenses and I remain on my COBRA insurance - still have about a year of that.... I am not certain when I will be able to get the initial dose - but cross your fingers.... No more short term vision loss issues - but man....heafaches today - just about made me look for something for a lobotomy...
Hey Lisa Marie - how are things with you? Any Luck with seeing Dr Abdou? How is your battle for the Ritux going? I have been thinking about you and your issues. I read your note on Cytoxan... It is the med that I have used most often over the past 14+ years... So far...I cannot say that I have had any "real" issues aside from knowing that taking this med is the only choice for treatment as Methotrexate did nothing and we discussed cellcept - but it seemed a step backward and never tried it.
The biggest effects that I have had is the long-term prednisone.... It is starting to make me feel like a "freak". I have always been happy with whom I am, happy with what I do, who I am... I have to say - looking at people, I am having twinges of envy - VERY strange.... to look normal... I just need to be patient and realize that time changes everything with enough patience.... I have to remember to be careful what I ask for .... ;-)
still working on getting rtx going to let Dr k kwas Huston treat me with Dr Abdou as a consult and if i need to transfer care over to him..they r in the same group...my Crp was 1.3 and my wbc was 11.5 rest of labs ok hate taking 60mg of pred a day...still have pain daily....somedays worse than others..noticing more episodes of strig
dor so will call Dr Garnett when i get back to missouri...hoping it will resolve when i start using my mega cool mist humidifer...i left mine at home...thinking i could buy one here...head back to tomorrow afternoon...hope to hit the beach tonight..never made it yesterday...kinda overdid it this weekend hope rtx works for u

Sangye
07-20-2010, 01:30 AM
Hi everybody -
I recieved good news on the Med.... Genetech approved coverage of the medication for me.. I am not sure if that is just the initial doses or for the duration - whatever that may be...
WHOOYA!! Congratulations, Nancy. I'm doing a little happy dance (mentally-- still got bad vertigo and I don't wanna splat on the floor :D )

Hoping this will be the start of a new road for you, dear.

elephant
07-20-2010, 11:31 AM
Great news Nancy,,,feeling envy is quite normal.,,,....even told my husband that I envied him because at that time I was unable to do normal things ( swollen joints, short of breath and tired). Yes, I even envied my friends!

Sangye
07-20-2010, 11:22 PM
The past couple weeks I'm even envying the "Me of 2 weeks ago" who could simply move without everything spinning or wobbling. That "Me" wasn't in great shape, but I could do all kinds of fancy things like turn over in bed, look up, stand up and bend over to put my shoes on.

TBulger
07-21-2010, 02:05 AM
Sangye

Sorry things are not going well. What causes the vertigo?

I did my first dose of rituximab last Thursday. Scheduled for three more, one week apart. No side effects at all. I went to work the following day. I've decided that Thursday 7/15 was the day I start taking my life back. I made myself get off the couch on Saturday and get some exercise. I know the other folks out walking probably didn't consider what I was doing as exercise, but it felt good to me.

elephant
07-21-2010, 03:03 AM
Good for you Tbulger, walking is great exercise! It just feel good just to move your body!

Sangye
07-21-2010, 03:15 AM
Bravo, TBulger. Glad you tolerated the rtx just fine. It completely wipes me out--like a reverse blood transfusion-- each time. Seems like people either have a similar reaction or like you-- don't notice anything.

The vertigo is a mystery. Several people in my sangha actually have the same thing going on-- some started almost the same day.

elephant
07-21-2010, 03:21 AM
How are they doing? Did the vertigo subside with them? Are the taking anything for it? How weird!

Sangye
07-21-2010, 03:22 AM
Still going on for most of them. None had it as severe as mine began, and none have it continually like me.

elephant
07-21-2010, 03:27 AM
It will probably take longer for you since your B cells are deplete and immune system pretty low. My mom had vertigo a few years ago and it lasted for two months. She had multiple tests and found out it was a virus.

Sangye
07-21-2010, 04:03 AM
Yeah, we'll see. I'm really bugged by it and all, but also trying not to project into the future with what if's. At this moment I can handle it, that's all I know for sure! My chiropractor is helping tons. I know that for sure, too. :)

drz
07-21-2010, 05:07 AM
WHOOYA!! Congratulations, Nancy. I'm doing a little happy dance (mentally-- still got bad vertigo and I don't wanna splat on the floor :D )

Hoping this will be the start of a new road for you, dear.

What causes the vertigo? Is this due to destruction of inner ear or damage to inner ear? Do some of our meds cause vertigo too? Sometimes I feel like I am walking like a drunk sailor and know I could never pass a sobriety test of walking the line.

Do most people regain ability to walk "normally" or do we keep shuffling or stay in wheel chairs or walkers?

Doug
07-21-2010, 05:20 AM
Many of us speak of being "wobbly". I think it relates most to those of us who had long exposure to Prednisone, especially at the start.

I'm interested now to know if there is some difference in mobility between heavy Prednisone "users" and those who have some of the newew therapies from the start.

It is difficult for me to walk on uneven or tilted surfaces. Very tiring and unpleasant because of the feeling that knee joints are slipping and weakness in the feet musculature and nerve issues is causing rollover to the lower side of the tilt.... I hope this does go away. So far it seems to come and go as an issue. I've been using my cane for most of this year because of these (to me) minor issues. I guess I've just adjusted to them being a "new normal" for me. As my mother used to always say (unconvincingly, to the family), "There's no reason to worry! I know how to fall!"

drz
07-21-2010, 06:07 AM
Wow-- my Wegs doc said the lowest IV pred he'd go for rtx infusions is 80 mg. The typical dose is 100mg IV pred.

(Actually, IV pred is solumedrol which is stronger than oral pred. 100mg Solumedrol is equivalent to 155 mg oral pred.)

Where did you learn about Soloumedrol and prednisone equivalents? so when I got 500 mg Solumedrol that equated to 775 prednisone so my 70 mg prednisone is only 10% of what i used to get??

Sangye
07-21-2010, 06:45 AM
I had found an online conversion calculator. The only one I can find right now doesn't list solumedrol, though.

They can't keep you on solumedrol doses like that for long at all. I began Wegs treatment on 1,000 mg solumedrol for 3 days (called "pulse steroids") and they dropped me to either 80mg or 60mg on the 4th day. Then I tapered from there over the course of 7-8 months. That's the typical most aggressive steroid treatment.

pberggren1
07-21-2010, 08:24 AM
There must a vertigo conspiracy going on somewhere!

Sangye
07-21-2010, 08:29 AM
It really makes me wonder what's going on. None of us who are affected live together or have any other environmental exposure in common.

And here in the DC suburbs we had that bizarre earthquake on July 16. I already had vertigo but it just feeds the conspiracy theory!

pberggren1
07-21-2010, 08:41 AM
That is really strange Sangye. Especially about the earthquake and not having any environmental exposure in common.

pberggren1
08-04-2010, 07:21 AM
I am wondering if I am having a flare like my usual ones if rtx will work to knock it out or will it take ctx. Who here has had success with rtx knocking out agressive Wegs either initially or on a relapse. This is concernig to me for future use.

Carly Hedge
08-04-2010, 08:05 AM
I don't know. We are using it to manage the condition right now for me but I believe my Dr. would use it to treat a flare up for me since its the only thing working for me. Everything else that we have tried makes my liver fail. :(

JanW
08-04-2010, 09:39 AM
Phil, remember that rtx is just as effective as ctx, and has been shown to be particularly useful in relapse cases. Specks in particular listed the cases in which ctx should be used over rtx and the answer was clearly none. I think it really disturbs some of this guys that ctx is being used in mild/moderate cases and that patients are being told this is the standard of care. I met someone at the conference who was very happy having been on ctx for 2 years because she believes it is maintaining her remission. Sad.

LisaMarie
08-04-2010, 11:44 AM
ok guys I survived my first dose of rituxan it hurts going in but not to bad took solumedrol 125mg ivp and benadryl 50mg and tylenol 650mg as a premed then 700mg of rituxan:.i feel like a mack truck ran over me...took some zofran 4mg when got home....so i plan on sipping on tea and resting....hoping i can go to work in morning..wish me luck....praying i do not get the shakes or anything else...will keep uou all posted...i pray this works

elephant
08-04-2010, 12:03 PM
IT's going to work LisaMarie! Take an easy tomorrow, don't worry too much about work.

Sangye
08-04-2010, 12:38 PM
Lisa Marie, I didn't get any pain with it going in. Maybe it wasn't in a good vein? But yeah, the mack truck... that's what it does to me. I hope yours clears up faster than mine. It'll work. Rtx rocks!

Sangye
08-04-2010, 12:40 PM
Phil, remember that rtx is just as effective as ctx, and has been shown to be particularly useful in relapse cases. Specks in particular listed the cases in which ctx should be used over rtx and the answer was clearly none. I think it really disturbs some of this guys that ctx is being used in mild/moderate cases and that patients are being told this is the standard of care. I met someone at the conference who was very happy having been on ctx for 2 years because she believes it is maintaining her remission. Sad.
I didn't realize that they thought rtx should always be used rather than ctx. That's great to know.

So many Weggies out there are in being put in harm's way needlessly. Well, we're just gonna have to do a better job of educating new members.

Sangye
08-04-2010, 12:42 PM
I am wondering if I am having a flare like my usual ones if rtx will work to knock it out or will it take ctx. Who here has had success with rtx knocking out agressive Wegs either initially or on a relapse. This is concernig to me for future use.
I have! My lungs hemorrhaged last summer, which is considered a severe flare. The first round of rtx stop the hemorrhaging, and the second round got the disease under control.

LisaMarie
08-04-2010, 12:52 PM
i will take it easy i peomoze....tolerated tea and crackers ....my want me on rituxan first and nothing else has worked so i hope i am as lucky as every one else.:just wanna lower my pews as soon as possible 60mg sucks .

me2
08-04-2010, 02:05 PM
I have failed on two rounds of Rituxan, is there a study that show it induces remission at an equal rate to Cytoxan? For me it does not.
That is not a study, but it is my experience. Rituxan may have given me short term benifits but only real studies can compare the two treatments. Maybe I have missed them. I am happy for anyone who achieves anecdotal results - like myself, but to extened advice the gold standard is studies. I would also accept the experience of doctors who have treated a large number of patients who could point to the experience of patients who could share their experience with us here. Otherwise , it is dangerous to draw conclusions from the most vocal testamonies - like me.

Sangye
08-04-2010, 10:02 PM
Me2, yes the RAVE study last year showed rtx induces remission as well as ctx, in fact a bit better. This is what the Wegs docs are seeing in practice, as more patients are trying rtx as a result of the RAVE results.

I forget-- were your 2 rounds of rtx 2 infusions each or 4 infusions each? I think I've asked this before, but you know.....

LisaMarie
08-04-2010, 10:24 PM
my understanding is getting it over 4weeks works better than day then day 14&15 you get a lower dose .....i didn't sleep well last night but i did not throw up either....still feel like a Mack truck ran over me and quesay in the tummy...but good otherwise ...i think all of us WG are bonded by this disease that effects all differently and different things work for all of us ....i could not handle methotrexate 10mg weekly...but others do it just fine....so i am gonna stay positive and hope in a year i will be on maintance ritixan and low dose prednisone...can not get a detailed game plan on medications from the doctor because he says 'we will have to see how u react each case is individual".....i have to agree with him after meeting u all.....we need to share because it helps us all

Sangye
08-04-2010, 11:05 PM
They give the 2-dose rtx treatment for less severe disease and the 4-dose for severe.

I'm hoping that in a year you'll be off all your drugs, Lisa Marie!

elephant
08-05-2010, 12:12 AM
Sangye less severe would mean no coughing up blood?

Brooke
08-05-2010, 12:15 AM
I had 4 infusions once a week for 4 weeks. I don't feel I was that severe. Mainly sinus involvement and some lung involvement but no hemorrhaging or anything like that. I was on 20mg steroids at the time (May 2010 were the infusions) and am now down to 5mg and doing great so far.
I hope you get something that works for you me2.

elephant
08-05-2010, 02:48 AM
Brooke how is your sinus involvement? Do you have congestion? stuffy nose? ear plugged up? Is all those symptoms gone?

Brooke
08-05-2010, 03:06 AM
Elephant - I have had 2 sinus surgeries in the past (before being diagnosed with wegs) and so I am wondering if that has helped some, I do not have any congestion or stuffy nose. My ears still buzz, it doesn't bother me because it is pretty quiet and I am used to it by now.
The main thing I have noticed since the Rituxan is that I have so much energy now and I am not out of breath going up stairs or walking.
I was so used to coughing so much at night and not breathing very well, and now that I am breathing fine and not coughing at night, I find myself waking up about 1:45 am every night just wide awake, like I am ready to get up for the day. I have been going to bed between 9-10 pm. I also get up at 5:50 am and feel great!

me2
08-05-2010, 05:44 AM
I had one round of 4 infusions first and then a round of 2 infusions of Rituxan. My experience was that Rituxan was a real breeze compared to Cytoxan. Of course the one that makes me feel the worst is the one that will help me the most right? Isn't that how medicine works?
For those with sinus trouble I feel for you. I have had WG 30 years and the sinus trouble has not been gone for most of that time. In fact I suffered terribly from sinus infections for a long time. In recent times I do not get sinus infections. It is kind of puzzeling to me and my own off the cuff assessment it is that through some strange irony the WG has eroded out so much sinus material that they stay open. I know that on an MRI I was shown how much damage had been done to my sinuses . It was shocking to see an MRI of normal sinuses and then look at the one of mine. But since they don't get infected any more I think I will take what I have and be glad. I think maybe if I had a 'normal' set of sinus and current WG involvement that I would be more prone to infection. Its just a guess on my part but I thought I would throw it out there as encouragement actually that eventully you can get improvement even in the face of lots of damage. It happened to me.

JanW
08-05-2010, 06:10 AM
me2, the docs at the conference say that often what WG patients (and unfortunately sometimes their ENTs) think are sinus infections are actually manifestations of WG, and that's how they end up with all these surgeries that sometimes can do more harm that good. Could it be that now your WG is just really well controlled or at a very manageable level?

me2
08-05-2010, 06:25 AM
JanW, In the beggining ( I feel like I'm writing a bible) I started with just sinus trouble. Nose bleeds and pain. I was treated for a long time with antibiotics for infection which of course did zero good. Then my ENT did a nasal biopsy and it came back positive for WG.

In later years was when I started to actually have sinus infections. In my experience the infections feel different from the WG attack on sinuses. Also the infections I later had did respond to antibiotics. I just kept getting new infections and having to try new antibiotics. Ironically most of the infections happened during a period when I was in remission (20yrs)

The past few years I have been batteling a flare with a wide range of problems including sinus bleeding , crusting and pain. But, (knock on a big peice of wood here) through all of this I have not had a single sinus infection. I think I can tell the difference between WG and infection, I could be wrong but my experience seems consistent. Thanks JanW for sharing so much of your WG conference experience here. I have really been soaking it up.

pberggren1
08-05-2010, 07:14 AM
My new ENT said nose or sinus surgery is a last resort for Weggies.

pberggren1
08-05-2010, 07:19 AM
Brooke, I forget what sinus surgeries you had?

me2, I am in remission right now and have had a recurring sinus infection for the last year or so. It is almost gone now. My new ENT figured that one out. I forget that you were in remission for 20 years. How did you feel over those 20 years besides dealing with sinus infections?

elephant
08-05-2010, 08:47 AM
Brooke I am so glad that the RTX is working for you! Sounds like you are in remission! Keep up the exercising, keeps you sane.

elephant
08-05-2010, 08:49 AM
Me2, so what kind of antibiotics did they put you on with all those sinus infections? I am on antibiotics almost everyday now. Anytime I get off the antibiotic the sinus crap comes back!!!
When you were in remission for 20 years, tell me ( help me out) what sinus symptoms did you have?

Sangye
08-05-2010, 11:53 AM
Brooke, I'm happy to read about how good you're feeling. You go, girl! :)

Sangye
08-05-2010, 11:55 AM
I had one round of 4 infusions first and then a round of 2 infusions of Rituxan. My experience was that Rituxan was a real breeze compared to Cytoxan. .
Do your docs think that if you did another round or two of the 4-week protocol that you might get better results?

Sangye
08-05-2010, 11:57 AM
I had 4 infusions once a week for 4 weeks. I don't feel I was that severe. Mainly sinus involvement and some lung involvement but no hemorrhaging or anything like that. I was on 20mg steroids at the time (May 2010 were the infusions) and am now down to 5mg and doing great so far.
I hope you get something that works for you me2.
I think anytime the lungs are involved it's considered severe disease--or at least severe enough to require ctx or rtx to induce remission.

me2
08-05-2010, 02:43 PM
Phil, other than being sick I felt great. But seriously, I had lots of time where I felt really good and was able to work and play really hard during those twenty years. I did also have eye infections due to WG scarring my eye drainage and eventually had surgery to correct that problem. I can't say those were trouble free years but they were years of complete freedom from WG. Ah, the good old days. I think switching to Bactrim helped me overcome the sinus infections and using Alcholol solution twice daily to wash my sinuses. Do you irrigate twice a day Phil with Alcholol?
Sangye, I seem to remember being told that the 2 week protocol was just as effective as the 4 week. If I remember right I got the 4 week initially because I requested it. Isn't it done in the UK that way? I could be wrong about that but that is how I remember it. My memory is a little fuzzy on those details (of course they ain't exactly details) because I was so extremely sick at the time and it was a while ago. Any idea what the VF experts recommend?
I know recently I happened to talk to a different Rhuemy at the clinic where I go and he asked how long it had been since my last treatment with Rituxan. I told him it was about 8 months and he said that he was treating his WG patients with Rituxan every 6 months. I didn't get to ask him more questions but I did wonder if I had been re-treated at 6 months if I could have maintained remission.

elephant
08-05-2010, 08:01 PM
Me2 thanks so much for the information. I rinse twice a day. How much alcohol do you put in? Is it rubbing alcohol? I agree, the Bactrim seems to keep my sinus stuff more stable...once I'm off it for a day...BAaaaaammm it's all back!
So happy to hear how you were WG free for 20 years!

Brooke
08-05-2010, 11:25 PM
Phil, I believe the surgeries were just mini sinus surgeries, and I think they used a technique called balloon dialation? It helped breathing through my nose better but didn't help any Weg's symptoms of course.
Sangye - I think you are right about lung involvement. It is so scary and frustrating when you can't breathe. Then comes the anxiety and craziness!!

Sangye
08-06-2010, 12:20 AM
Sangye, I seem to remember being told that the 2 week protocol was just as effective as the 4 week. If I remember right I got the 4 week initially because I requested it. Isn't it done in the UK that way? I could be wrong about that but that is how I remember it. My memory is a little fuzzy on those details (of course they ain't exactly details) because I was so extremely sick at the time and it was a while ago. Any idea what the VF experts recommend?
I know recently I happened to talk to a different Rhuemy at the clinic where I go and he asked how long it had been since my last treatment with Rituxan. I told him it was about 8 months and he said that he was treating his WG patients with Rituxan every 6 months. I didn't get to ask him more questions but I did wonder if I had been re-treated at 6 months if I could have maintained remission.
If it were true that the 2-week protocol was just as effective, they would never do the 4-week protocol.

The first round was so hard on me, that when it came time to do the second round, Dr Seo said if I wanted to try the 2-week protocol instead he'd be okay with it. But the Wegs symptoms were building up and I had a gut feeling it wouldn't have been enough. Based on how well it got the Wegs under control I think I was right.

It does seem like if you had been retreated at 6 months with the 4-week protocol that it might have been enough to push you into remission.

The VF docs don't automatically re-do rtx every 6 months, it's based on how you do. In my case, we retreated at 5 months and will hopefully not have to do it for another year. There are also people who had one or two rounds and it put them into solid remission for years.

LisaMarie
08-06-2010, 12:44 AM
still feel like a mack truck ran over me ...will be working part a day today .....but holding on that this will work for me......want off pred soo bad ...i hate 60 mg......will do what they tell me though.....I have read all I can about rituxan......so it is my life preserver for now...as well as you all......better get back to work

elephant
08-06-2010, 12:46 AM
Take an easy LisaMarie, Been there know how you feel. Keep us posted on how your day went.

Sangye
08-06-2010, 01:28 AM
Lisa Marie, that's what rtx does to me, too. For me, each infusion was much worse. I hope that doesn't happen to you, but know that even if it does, it's temporary. I've just accepted that when I do rtx I'm going to feel horrific for 6 weeks. It's worth it when you get to the other side, though.

pberggren1
08-06-2010, 03:18 AM
Phil, other than being sick I felt great. But seriously, I had lots of time where I felt really good and was able to work and play really hard during those twenty years. I did also have eye infections due to WG scarring my eye drainage and eventually had surgery to correct that problem. I can't say those were trouble free years but they were years of complete freedom from WG. Ah, the good old days. I think switching to Bactrim helped me overcome the sinus infections and using Alcholol solution twice daily to wash my sinuses. Do you irrigate twice a day Phil with Alcholol?
Sangye, I seem to remember being told that the 2 week protocol was just as effective as the 4 week. If I remember right I got the 4 week initially because I requested it. Isn't it done in the UK that way? I could be wrong about that but that is how I remember it. My memory is a little fuzzy on those details (of course they ain't exactly details) because I was so extremely sick at the time and it was a while ago. Any idea what the VF experts recommend?
I know recently I happened to talk to a different Rhuemy at the clinic where I go and he asked how long it had been since my last treatment with Rituxan. I told him it was about 8 months and he said that he was treating his WG patients with Rituxan every 6 months. I didn't get to ask him more questions but I did wonder if I had been re-treated at 6 months if I could have maintained remission.

I don't irrigate with Alcholol. I can't find it here in Canada. I do irrigate with pure water (RO) with sea salt and baking soda in my Water Pik.

me2
08-06-2010, 03:52 AM
I had a long reply written to everyone here and hit the wrong button and lost it. Consarnd computers!!
I will pop in and piecemeal my response again. Phil, that sounds like a good program you are doing. Spot on. I forgot about using baking soda, I think there are little buggies that don't like it - good idea. I like using the water pik too but got lazy and in a hurry when feeling better and now I just mix salt water in a cottage cheese size container and snuff it up over the bathroom sink. I order my Alkalol over the internet now days. I forget where I found the best price but my local pharmacy quit giving me a discount for ordering it by the case when they changed owners so I had to look elsewhere.

Elephant, do not use alcohol. Alkalol is a completely different product (my misspelling it earlier didn't help make that clear). It is very soothing and mildly antiseptic. I don't use it every day like I did when I was getting infections. Occassional use seems to be working for me now and helps with the budget. Some pharmacies will order it for you too.
Ok, now looking carefully for the right button...

LisaMarie
08-06-2010, 09:53 AM
worked for 5 hours or so then rested now sitting under a tree watching my son practice tackle football...his first practice....got the first aide kit with and a jug of cold h2o one for him and one for me...lol still feel like a Mack truck and irritating bone ache but happy and grateful to be able to watch my son. my oldest turned 16 today and jumped off a 50ft cliff into the water against his grandmother's request...he survived both...lol kids grow so fast

elephant
08-06-2010, 11:02 AM
That sounds like a great day to me.

GC Lim
08-07-2010, 09:04 PM
hi all, my rheumy said that there is little data/evidence of rituximab being used for maintenance, it is mostly used for induction...is this correct ? Is anybody using it for maintainence currently ?
Appreciate some advice...thanx !:)

Sangye
08-07-2010, 09:56 PM
The main research for rtx has been regarding induction of remission. Rtx is used only for Wegs involvement that cannot be contained by the milder mtx, imuran or Cellcept. It's primary use is as a substitute for ctx. After the induction phase you can take a milder drug to maintain remission.

Some people get rtx on a more regular basis (eg every 6 months, every year) because they cannot maintain remission without it.

JanW
08-08-2010, 09:58 AM
Sangye's right and I think that doctors are even questioning whether medications maintain remissions. Research is showing that maintaining remission is much more random and that must be weighed against possible long-term damage from the drugs. For instance all immunosuppressants increase the chance of cancer because your body's defenses aren't doing a good job on the meds.

me2
08-08-2010, 12:11 PM
Interesting point JanW. I through my own experience have questioned whether 'maintanance' drugs were in fact maintaining anything at all. I have had many , many failures on maintanance - Immuran, methotrexate, etc and really only seem to maintain remission through use of the big guns. My twenty year remission was on no drugs at all. My recent ten years of trouble was on every drug under the sun- except Cytoxan.
Finally having run out of alternatives I am back on Cytoxan and doing better.
I know I am only a sample of one but as one who has to chart my own future course I had already decided to err on the side of somewhat longer treatment of the harsh drugs and less of the maintanance. When I take Cytoxan I can feel the disease process recede in a way that none of the other drugs did for me. Except high dose prednisone and we all know that doesn't count for what I am talking about.
I would love to hear the opinion of a long time WG doc on this. In the early days WG was perhaps over treated but in todays world of fine tuning I wonder if the pendulum has not swung into too light of treatment and therefore excessive maintanance and repetitions of primary treatment. Interesting questions.

elephant
08-08-2010, 01:54 PM
I sure like to get off one of my medicines that is keeping me in remission. Maybe next year, who know?

Jack
08-08-2010, 06:25 PM
I wonder if the pendulum has not swung into too light of treatment and therefore excessive maintanance and repetitions of primary treatment. Interesting questions.
It is a question I have asked before when I've read of patients who are having trouble gaining any sort of remission. My own experience was that I was treated very aggressively due to the poor shape I was in, but this worked within a few days and I was back on my feet and feeling quite well! The down side of course is that I am now suffering badly from side effects, mainly due to the Pred up to now.

Sangye
08-08-2010, 10:13 PM
When I was first dx'ed I was treated as aggressively as possible (ctx and started on 1,000 mg pulse steroids) and it didn't touch the Wegs. I even got tons of blood clots while on the pulse steroids, showing how out of control the inflammation was. I had the same feeling of the disease receding only when I took rtx.

So I have a theory (yes another!).... We often talk about the cause of Wegs being either toxins or infections. Many of you have involvement that resembles an infection, and even do better when using antibiotics. For others it makes no difference and might even make them worse.

In my case I believe the Wegs is due to toxins. Ctx is highly toxic and made me so much sicker. I felt like it deepened the Wegs in my body. (That's a concept in holistic medicine-- not treating the cause and using drugs drives an imbalance deeper into the body and it resurfaces as other imbalances, conditions or disease) So giving me ctx was adding toxins to toxins.

However, in those with more "infection-type" Wegs, maybe the immune-suppressing effect of ctx outweighs the damage of the toxic load.

Sangye
08-08-2010, 10:17 PM
Jack, I know you began with severe kidney involvement, but I don't remember what else you started with. Dr Seo said kidney involvement without lung involvement is "very easy" to get into remission with ctx.

I remember that you struggled getting into remission for your first 5 years or so, but don't remember what the issues were.

I'm sure I've asked this of you at least half a dozen times. Please don't throw scones at me. :D

Palmyra
08-08-2010, 10:21 PM
Rituximab as Maintenance Therapy for Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis -- Rhee et al. 5 (8): 1394 -- Clinical Journal of the American Society of Nephrology (http://cjasn.asnjournals.org/cgi/content/abstract/5/8/1394)

I think this is new...my auto search put it in my mailbox this morning. Need to go back and check the date of publication, but I felt the information within was right on target.

Although nothing official, my daughter used Rituxin for induction, and has used it as maintenance for 3.5 years now. As the conclusion of the study mentions, long term effects are not known.

elephant
08-08-2010, 10:28 PM
I am so glad that I am finally going to get to the bottom of this. Tired of antibiotics. Now the question is, "Is this inflammatory or infection?" I have heard that some people of such mild WG that the only medicine they take is Bactrim daily. It keeps them in remission. Dr Langford's colleague told me that Bactrim has something in it that keeps the WG in remission with some patients.

Sangye
08-08-2010, 10:34 PM
Wow, that's hot off the press! Published in May 2010.

One of the stats from it:
The percentage of patients on prednisone decreased from 92% at baseline to 59% at 12 months and 55% at 24 months.

That's not just lower pred, that's off it altogether. Whooya! :D

Doug
08-08-2010, 11:34 PM
I am so glad that I am finally going to get to the bottom of this. Tired of antibiotics. Now the question is, "Is this inflammatory or infection?" I have heard that some people of such mild WG that the only medicine they take is Bactrim daily. It keeps them in remission. Dr Langford's colleague told me that Bactrim has something in it that keeps the WG in remission with some patients.

I had serious kidney and lung involvement that was brought into remission with the dreaded duo, Cytoxan and Prednisone. My doctors went for pretty aggressive treatment at first, put me on CellCept and Bactrim once I hit remission, then dropped me back to Bactrim MWFs, which is all I take to maintain remission now.

In the seven years since I was diagnosed, I had to make a move to an apartment from a house, and I still haven't found a lot of the papers related to my care. My memory's shot for specific dates and dosages, but I do recall a letter from my pulmonologist, mentioning that my case had aspects that suggested an infection as a trigger to the whole mess, though the rheumatologist (dept. head) at the University of Colorado he consults with said there was nothing in the laboratory testing that identified a specific causal agent. I definitely had the severe form, yet Bactrim is all I'm taking for maintenance.

Jack
08-09-2010, 12:39 AM
I started with sinus, then joints, skin and eyes and then kidneys which prompted the diagnosis. Relapses were in the form of slight sinus problems and joint aches backed up by blood test results starting to go off.
My lung involvement was much later and is diagnosed as Bronchiectasis. There is some debate as to whether this is due to Wegener's. I believe it is.

elephant
08-09-2010, 12:45 AM
Thanks Doug for that input. I need to bring that up to my Rhuemys about possibly just staying on Bactrim daily. Everyother day is not working for me and I'm on a total of four medicines to keep me in remission! Plus I take other drugs because of the side effects, and I'm suppose to take two more medicines and I refuse to take those.

Sangye
08-09-2010, 01:03 AM
Elephant, if daily Bactrim can keep you off of another remission drug, I'd say that's a good trade-off. Much less toxic. Maybe it will allow you to lower your pred, too.

me2
08-09-2010, 02:51 AM
Great discussion here. Sangye, I would certainly fit the category Dr Seo suggests. Thirty years ago I was on Cytoxan at a time when all I had was sinus involvement. I was encouraged by a Naturopath to quit taking Cytoxan as it was 'toxic' and contributing to my problem. I trusted this person. I began extensive treatment to detoxify and promote health in my body. As I did this the disease got worse and worse. There was little to no information available on the disease in my local Universities - I looked. And my regular MD told me nothing about what I had.
I continued to get sicker and sicker and my judgment suffered also. I now had extensive disease throughout my body, especially my kidneys but excluding my airways.
I had to quit work and move back in with my parents and reached a point where I could not walk because of disease and muscle loss. I was young , uninformed , mislead and in terrible pain. My mom asked me one day if she could try and make an appointment for me at the University of Washington in Seattle . I cried and said "I don't care". It was not a defiant statement , it was not a statement with any energy of any sort. For the only time in my entire life I truely and completely did not care. I had totally given up.
I was put on oral Cytoxan and prednisone. I made a miraculous recovery. All the suffering and pain of two years of untreated disease could have been avoided if not for being misled by a Naturopath. As I lay dying on my parents couch I continued to recieve final bills from the Naturopath but not one single inquiry as to my health. Ok, thats old news. I want to get back to the great discussion here. Forgive me if my narrative relapses from time to time. Drinking some tea should induce remission.
My current problems with WG now have airway involvement, CNS involvement and of course the usual sinus trouble. The article cited above was very interesting and prompted me to do a bit of searching on the subject. I found another article that was related :
A multicenter survey of rituximab therapy for refr... [Arthritis Rheum. 2009] - PubMed result (http://www.ncbi.nlm.nih.gov/pubmed/19565480)
This article make some interesting statements. (I wish I could get the whole article and not just an abstract. Does anyone here know how to get articles from journals that want big bucks for their articles without shelling out the big bucks. I'm not trying to make money off them or use them to treat people in my very lucrative practice - I dont have one.)
The article refers to ANCA positive associated vasculitis. I remember my doc some time ago suggesting that perhaps Rituxan did not work as well for me because my ANCA has never been positive. The article cited by someone else here does not say if their patients were ANCA positive. Once again, I'd like to read the whole thing and not just the abstract - it might adress that question.
The article I cite here does make an interesting statement in this realm of inquiry "Although ANCA levels fell after rituximab therapy, relapse was not associated with ANCA positivity or a rise in ANCA levels."
The role of ANCA posititivity is puzzeling to me'
According to the article roughly half of the patients who achieved full remission experienced relapse at about 11 months. This fits in with experience where I relapsed after about 8 months. I wonder if it was this study or others like it that have encouraged the practice of automatic 6 month treatments with Riuxan?
Sangye, there is also a statement in the article that adresses something you and I talked about recently. Remember I was first treated with 4 weekly infusions of Rituxan (at my request) and then later with 2 treatments 2 weeks apart the next time. I wonder if my doc had read this article because it says "Neither the initial rituximab regimen (4 infusions of 375 mg/m(2) each given 1 week apart or 2 infusions of 1 gm each given 2 weeks apart) nor withdrawal of immunosuppressive therapy (37 of 60 patients [62%]) influenced the timing of relapse. Thirty-eight patients received >or=2 courses of rituximab, and complete remission was induced or maintained in 32 of them (84%). IgM levels fell, although IgG levels remained stable. Forty-six serious adverse events occurred, including 2 episodes of late-onset neutropenia, which were attributed to rituximab. CONCLUSION: Rituximab was effective remission induction therapy for refractory ANCA-associated vasculitis in this study. There was no difference in efficacy between the 2 main treatment regimens"

No difference in efficacy between the 2 main treatment regimens. It would seem from the information in this article , my own experience , and what I have learned from others here is that relapse when using Rituxan is probably related more to timeing rather than to size of dose (which regimen) .
Of additional interest to someone like me who is ANCA negative is that the article says " ... relapse was not associated with ANCA positivity or a rise in ANCA levels."
This might mean that although they use ANCA positive people to conduct the trial , ANCA positivity may not be a factor in successful treatment of WG with Rituxan.
I am going to have to discuss this with my doc next week as I am next scheduled to recieve another treatment of Cytoxan. Quite a quandry for me because it does seem to be working for me.

elephant
08-09-2010, 05:33 AM
Thanks for the information ME2. That's why I love this forum.

Sangye
08-09-2010, 10:42 AM
Great article me2! I'm listing the study's conclusions to make them easier to read :

1) Rituximab was effective remission induction therapy for refractory ANCA-associated vasculitis in this study.

2) There was no difference in efficacy between the 2 main treatment regimens.

3) Continuing immunosuppression did not reduce relapses.

4) Relapses occurred, but re-treatment was effective and safe.

5) There was no clear influence of rituximab on the frequency of serious adverse events.

6) ANCA and B cell levels lacked sufficient sensitivity to guide the timing of re-treatment.

Some of this is what JanW emphasized from the Symposium-- ie, maintenance drugs don't seem to keep relapses from happening.

It'd be great if the 2-week regimen is as effective at the 4-week--fewer drugs is good! I can't wait to ask Dr Seo about that.

I found the final conclusion very interesting-- that the B cell levels are not reliable indicators for when they should repeat rtx. It makes sense, because some people need more rtx before the B cells could be returning (ie, before 6 months), while other people still don't need it long after their B cells have recovered.

One question for you, me2: Was your Wegs considered refractory when they did rtx?

JanW
08-09-2010, 11:54 AM
To me, Number 3 was the stunner, particularly when you talk to people at the conference who have been on immunosuppressants for a decade...if it's possible that it's all just random anyway, but damage from the drugs is NOT random...it really has some interesting implications for future treatment.

I think that it was on this thread that me2 and Jack were talking about having their initial presentation being beaten into remission quite harshly and then moved on to maintenance drugs...i suppose that what would be interesting to see would be whether keeping patients in the induction phase longer makes a big difference to future relapse. The experts were really very specific about moving off ctx in 3 to 6 months (max) and pred in a similiar time frame (although that doesn't seem like that happens very much).

me2
08-09-2010, 01:05 PM
Thank you Sangye for reducing the article the way you did. I'm going to learn to write and to think as a result of WG as a side benifit. To answer your question, yes, my WG was considered refractory when I did Rituxan. I had even done Enbrel and IVIG... now considered ineffective. I dont blame my doctors. At the time they were reasonable choices. They were trying to help me and save me from harsher choices. This might turn out to be misguided but it was honest and compassionate.

I am impressed like you that B cell depletion seems to be a good idea independent of clinical measurments. It seems that to be safe as the lower risk alternative. I'd like to hear a more experienced view point like your Dr Seo or Dr Langford or one of the others weigh in on this.
Of course I should share my own experience to qualify my own bias. Rituxan has been very easy on me whereas Cytoxan has been VERY harsh. Of course in my case, with the questionable timeliness of Rituxan, it would be expected that Cytoxan on the proven schedule would work bettter for me.
JanW you ask some great questions. WG treatment is an evolving science. Number 3 is a stunner and begs more questions. How can continued immunosuppression be ineffective and re-treatment be effective and safe??
I would love to read the full article.
The experts are shortening the induction phase today. It saves people from the side effects of harsh treatment. What will be the conventional wisdom of tomorrow? I don't know. I feel blessed that these wonderful people are working on it and doublely so that we WG patients like Sangye, JanW, Elephant and Jack - to name a few, are working on it also. Do not think that our work is insignifigant. It matters a lot.

Palmyra
08-09-2010, 10:52 PM
Questions of retreatment to obtain B-cell depletion (if failed after first round therapy. And yes, I do know this article was regarding RA treatment, but what starts down the autoimmune pipeline can frequently benefit those with less common disease) Please go to the following study if interested:

Management of nonresponse to rituximab in rheumatoid arthritis: predictors and outcome of re-treatment- Dr Taher Mahmud's Arthritis Update (http://learnaboutarthritis.net/?p=776)

The biggest problem we have witnessed so far with prolonged immunosuppression/Rituxin are some pretty serious issues with infection. Other long term affects are yet to be seen.

Thanks, and good morning to all of you out there! Brush and floss ::cool:

JanW
08-09-2010, 11:22 PM
The question is, really, if relapse is even somewhat random, and immunosuppression is far from benign (even if the bad stuff doesn't show itself for years and years), isn't it worth it just taking your chances that you will relapse and treat what you have rather than trying to prevent what you don't have. As the neph from UNC said, "If I told you I could give you an antibiotic every day for five years to prevent one sinus infection that you may or may not get, you'd say 'I'll take my chances.'" Even with the heightened risk of bladder cancer, loss of fertility and other side effects of ctx, let's face it, it looked pretty good vs. certain death in less than one year. Now doctors are coming around to the idea all of these treatments may extract too high a cost for a benefit that might not even be there for many of us.

jola57
08-10-2010, 01:44 AM
JanW, totaly agree. Unless the symptoms require immediate help for kidneys or lungs and can be managed somewhat with regular over the counter meds, maybe do nothing is a way to go. The problem is knowing at what time is it ok to not do the drug treatmen without letting things get too far. I had not organ involvment at the beginning but the pain was excruciating and I had to get on drugs to get the blood work down to normal levels. It worked and I was taken off of the ctx and within days lungs started to bleed. So no easy answers here. It has to be case by case.

elephant
08-10-2010, 02:35 AM
Number 3 shocked me. My thought was WG is an autoimmune disease and taking medicine to reduce our immune system would keep WG away! My question is why it comes back?

Col 23
08-10-2010, 03:06 AM
Does it just sit there and then the dog (as Sangye refers to it) wakes ups with a wimper, growl or a big roar. I too want to know why it comes back. What starts it all again.
Col 23

pberggren1
08-10-2010, 04:09 AM
So many things are just not known about our body and medicine in general.

JanW
08-10-2010, 04:15 AM
That question is just as frustrating to researchers as what causes people to get it in the first place.

elephant
08-10-2010, 04:31 AM
Celiac is a autoimmune disease...the cure is not to eat gluten anything with wheat, barley and oats. I often wonder are we eating something that we are allergic too, but it is so minute at the cellular level researchers can't pinpoint it?

me2
08-10-2010, 04:37 AM
When I first got the disease a zillion years ago I was totally vegetarian for a year and my diet was very limited. I even did a total fast from food -water only, for 14 days -it didn't help. I have done a fair amount of experimentation with my diet.
I would be surprised if there is something in our diet that is causing or aggravating WG. I believe there could be things that we are sensitive to and might be avoided but not to the extent that it substantially effects the disease outcome. Just my opinion.

elephant
08-10-2010, 04:39 AM
Me2, I was thinking about that the other day ...and glad you experimented! Wow, 14 days just drinking water? How did you do that?

JanW
08-10-2010, 04:49 AM
The problem is there is so much variabilty in what we eat and what we do that it would be very hard to pinpoint.

me2
08-10-2010, 04:57 AM
Elephant , I used to have will power. This was before Lord Prednisone took over my dietary choices.

LisaMarie
08-10-2010, 10:06 AM
ok guys ... ..coughing up thick greenish scant sputum....waiting on chest x ray results feel like crap and hoping I can still get my ritixan on friday.....i have to agree with most of the previous comments....WG affects us all differently and even if some similarities it is a tricky beast....i think it is great we can bounce off each other and share.....maybe one day we can help them figuire it all out with the docs

elephant
08-10-2010, 10:36 AM
LisaMarie sounds like you have an infection. Once you start antibiotics you will feel better. Let's know how you are doing tomorrow!

Sangye
08-10-2010, 11:23 AM
Oh no, Lisa Marie. That doesn't sound good. They can'tl start rtx if you have an infection. I hope you can get it cleared up very soon!

Lightwarrior
08-10-2010, 12:16 PM
LisaMarie sounds like you have an infection. Once you start antibiotics you will feel better. Let's know how you are doing tomorrow!
I agree with elephant. Hope you feel better, have they started you on antibiotics yet?

LisaMarie
08-10-2010, 02:50 PM
no antibiotics yet ...waiting on doc ugh...do't want to delay my nextdose of ritixan...will keep u all posted

DEE
08-10-2010, 03:31 PM
hi LisaMarie hope things get sorted soon
i had to go back on extra anti b yesterday but im lucky my gp is just up the road from me , i rang about a problem and had them twenty minutes later
hope they get back soontake care DEEx

LisaMarie
08-11-2010, 03:31 AM
gonna rest and do sinus rinsed bid..no antibiotics ..cxr clear wait and see...it may just be my WG....flaring in my sinus ...it may not like the Rituxan...will keep u post...gonna take a nap