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Christrd
02-26-2010, 10:21 PM
Hi, my name is Christian I am 27 and I was diagnosed with Wegeners in Sep of 09. They have me on the same meds as most of you guys. The problem or the reason why im scared because I am curently going to UCLA Harbor Regional Center because I was told it was the best, but no one there has ever treated Wegeners. For the past 5 months, all they do is take blood samples and send me on my way. When I do get to speak to a DR. all they ask is how the disease started and how im feeling. Im still on the same Meds since day one.
Is there anywere I can look or call to get a listing on Dr's who treat wegeners right?
Today was the last straw. Dr. forgot to give me the Rx for Cytoxin. Once I noticed the mistake on the Rx, I went back but it was too late, he wnt home for the day.
Can someone please help. Thanks.
Also Thank you to everyone who shares there experiences. I dont feel alone anymore.

Sangye
02-26-2010, 11:37 PM
Hi Christian, I'm glad you found our group! You are right to be scared with that kind of non-treatment. Contact the VF and tell them your situation. They'll know exactly how to help you find a Wegs specialist.
Contact | Vasculitis Foundation (http://www.vasculitisfoundation.org/contact)

Please call them today if you get this. Take action asap on their recommendations. With Wegs you can't lose time.

Jack
02-26-2010, 11:43 PM
Hi Christian and welcome. :)

You have every right to be concerned about your treatment. During the first six months, I would have expected you to have had numerous adjustments to your medication and have some idea about how the disease is progressing. Seeing someone who specialises in Vasculitis is essential! I'm sure someone more familiar with the centers in the US will be along soon to give you more advice. In the meantime, keep checking on the forum and perhaps tell us your story in the new members section. We would love to know more.

Edit: Sangye beat me to it! :)

JanW
02-27-2010, 01:09 AM
Yes, Christian, please share your story. And definitely get on that site, like Sangye said. You will find the list of specialists and also lots of good information there (I watched some video on there that was terrific). For what it's worth, I live in the NYC area and was able to get in with one of the ENTs the VF lists on its website the very next day after my call, and he will be giving me surgery to fix my windpipe next week. Like Jack says, about the meds, I've only been diagnosed since the end of January, and have already had one med adjustment (taken off one) because of spiking liver enzymes. I was only on that medication for two weeks! My rheumo says that in cases like mine (I'm not disabled by this disease, have no kidney involvement and have symptoms that need to be corrected surgically -- windpipe and nose issues) not having the medication harm you is just as important as having the medication work. I'm actually surprised that the people at UCLA wouldn't be more "with it" and at least tap into consultants who work on this disease -- you're not at some community hospital there. I'm glad that you have found us.

jola57
02-27-2010, 05:29 AM
Hi Christian and welcome. I am probably one of the very few that do not have a specialist but fortunately I am fully aware of the disease and with this forum can deal with my rheumy, but many times I feel like I am missing out. Please do get a specialist from the onset, do not stay with someone who forgets to give you your meds !!

katwoman
02-27-2010, 09:22 AM
Hi Christian, welcome to the group and I am sorry to hear you are feeling scared with the treatment you are receiving - some of us can totally relate to what you are experiencing with doctors but as many have told me this is your life and so if you don't feel comfortable/safe with your doctors you have every right to seek other professional help, so I hope you follow up with the contact Sangye has given you.

Please let us know how you go!

kat

Christrd
03-02-2010, 07:05 AM
Thank you guys. I feel much better knowing that im not alone in this. Sangye, thanks for the info. It was very helpfull. This morning, Dr. actually called me saying that he wants to start somthing insted of Cytoxin. I forgot the name of it but it has to be administerd through IV. Do any of you had this done before?

JanW
03-02-2010, 07:20 AM
Maybe your doctor is talking about rituximab (rituxan) commonly referred to as rtx on this board? There were several studies that showed good results with WG patients taking this drug. What I find helpful is to take a notebook to my doctor to note down all of my drugs (both my ENT and rheumo spell/write their names on a piece of paper). I have found that my docs, because they know that they are dealing with people who may have to be on so many different types of meds or see so many different types of docs, would rather write stuff down. Being safe rather than sorry, and all that.

The other thing I wanted to mention is that the VF's annual vasculitis conference will be going on in Long Beach this year. Don't know how close that is to where you are, but great access to other patients, latest research, docs, etc. You should check out their website.

Sangye
03-02-2010, 07:34 AM
Christian, yeah that must be rituxan/rituximab/rtx. They give it via long IVs, usually once a week for 4 weeks. Sometimes they do once a week every other week for only 2 IVs total. I did a round in October and am doing another round starting Wednesday. Look up the threads about Rituxan on here. Lots of useful info. It's WAY better than cytoxan.

Christrd
03-02-2010, 10:42 AM
Thank you Jan and Sangye. It is Rituxan. I will be given my first doce Tomorrow morning. Twice a month total. Im glad that Rituxan is better then Cytoxin. The Treads here are extreamly usefull. My question is, is it painfull? I mean, why do I need Tylenol before they administer it? Well, thats what I was told.
Oh and Jan, I love like 5 min away from Long Beach so I will be getting some info to attend the conference. Thanks for the heads up

Christrd
03-02-2010, 11:00 AM
lol I love 5 min away.....you know what I ment.

JanW
03-02-2010, 11:44 AM
That's so great for you. Glad you put a pic up too!

Sangye
03-02-2010, 12:07 PM
Christian, you can expect to have 3 drugs administered with each rtx infusion.
1) IV pred-- helps prevent/ minimize allergic reaction
2) Tylenol-- to prevent a fever
3) Benedryl-- to prevent allergic reaction

Sometimes they don't give the Benedryl, and sometimes if you tolerate the first infusion fine they don't give benedryl or tylenol in the next infusions. They didn't give me tylenol and I never spiked a fever.

The pred dose is fairly high-- usually about 100mg solumedrol (equiv 150mg oral pred). You'll probably feel amped up within an hour or so. Benedryl knocks you out for an hour or two.

Rtx is a genetically-engineered antibody, so there's always a chance of allergic reaction to it. The chance is quite low, especially with the pred on board. The infusion center will monitor you throughout the IV.

My Wegs doc was willing to lower the pred dose a bit and eliminate the benedryl, but I don't want to mess with a good thing. It worked, and I'll just tough out the side effects.

Terri
03-02-2010, 12:16 PM
Sorry to hear you've had some bad experiences to start already just with the Dr's.
I'm glad you found this site. You will get lots of help here. Believe me when I say these people know how to make you feel better. They've done wonders for me. I don't always post a comment , but every night I check out what is being said. I don't want to miss anything! lol
5 minutes from Long Beach?
aahh Christian, you will be the envy of this neighborhood. I hope you will be able to go to the smyposium.
That would be GREAT!
I hope to go some year it is a little closer to my home.
Good luck with your treatments and I hope you you are feeling better.

elephant
03-02-2010, 12:35 PM
Welcome Christian, glad your getting those treatments soon. I have heard great things about this drug, and it is very promising for us Wegeners people.

wgrebel
03-02-2010, 01:40 PM
You are not alone. I had to switch doctors also. The doctor who originally diagnosed me did not seem pay as much attention to me after I got out of the HP. I have a wondeful "team" of rheumatolgists who work with me now and I have made some improvements. I am down to 40 mg a day of prednisone and 150 mg of Cytoxan. Keep on those doctors, the aforementioned doc who diagnosed me also forgot to call in my cytoxan prescription when I left the HP. Keep plugging away to find the right doctor and my wife and I will pray for you.

Christrd
03-02-2010, 04:44 PM
Thank you so much Sangye, your just full of information. Im so happy to have found this site. You put my mind at ease.
Terry, elephant, and wgrebel, thank you for your warm hello.
It seems like we went through the same ordeal wgrebel. Im at 30 mg of prednisone now. Dr. cut it in half. I hope to loose this weight, or moon face as I seen it called here B4 my wedding. Im getting merried this april to the monkey on my back (girl on pic) So I would like to be healthy by then.
Once again. Thank you all for your input and thank you for posting on this site. Dont feel so alone anymore. :)

elephant
03-02-2010, 10:42 PM
Congrats Chris, you will feel good by April. The moon face started to disappear when I was down to 10 mg of Prednisone. Just be careful about weaning down too fast on the Prednisone. If you wean to fast the WG can flare. Usually if you were on 30 mg of Prednisone the decrease you to 20 mg of prednisone for two weeks and then decrease you to 17 1/2 for two weeks and 15 mg for two weeks, then 12 1/2 for two weeks, then 10 mg for two weeks. Then after than they usually/sometimes go down 1 mg a month. Just see how you feel and if you think a flare is happening they might have to adjust the prednisone and other immunosuppressant drugs. I wish you and your soon to be wife the best!

Sangye
03-03-2010, 02:31 AM
Glad I can help, Christian. I hope you'll be much better by April. Try to keep your stress level as low as possible and take each day as it comes. Hard to do on pred, because it tells your body and mind "Panic!"

Elephant knows the safe way to taper pred. My original doc (not Wegs specialist) tapered me too fast at the end and the Wegs fire burned on...

Col 23
03-03-2010, 04:15 PM
Hi Chris
Im also new to the Weggie club and I felt just like you very alone, worried and isolated with no real knowledge of WG. I found myself getting on the Web and reading everything which was good and bad before I could get an understanding of anything and understand where I was at. Thanks to this support group (although Ive only posted more recently) their experiences have and are helping me to get my head around it.

Sounds like you need the docs to answer a few questions. I think it was Andrew Administrator who advised that to write down your questions and dont be afraid to ask anything. Also tell them everything that is wrong with you sometimes the small ailments are the important ones. Also not sure what medication your on but if your on high dose of Steriods I found that I lost the plot alot and had melt downs and walked out of appointments, cried alot and was very moody, sometimes I wasnt communicating very well. Apparently its a good idea to take a advocate (friend, relative or partner with you to doctors appointments) and hey if your not happy with your treatment ask them about their experience and who they are consulting with. Get them to stick to the scientific management (if you can). When they ask how your feeling from my experience they are trying to see if its related to sideaffects of medication. No sure what your story is but just letting you know what's happenede to me. Hope this is helpful
Sorry I still dont know enough but this is my recent experience. Col 23

Sangye
03-03-2010, 09:36 PM
If your on high dose of Steriods I found that I lost the plot alot and had melt downs and walked out of appointments, cried alot and was very moody, sometimes I wasnt communicating very well. Apparently its a good idea to take a advocate (friend, relative or partner with you to doctors appointments) and hey if your not happy with your treatment ask them about their experience and who they are consulting with. Get them to stick to the scientific management (if you can). When they ask how your feeling from my experience they are trying to see if its related to sideaffects of medication. No sure what your story is but just letting you know what's happenede to me.
Well put, Col! :)

Christrd
03-04-2010, 06:32 AM
Thank you Cole 23.
Sangye, I have a question for you and the whole forum. I was to recive my first doce of Rituxan Yesterday, but Dr. had other plans. He said it was a good Idea if they take me off the Cytoxin for a month B4 they put me on rituxan. I asked if it was a good idea to take me off cytoxin? Dr. said that Cytoxin was not doing anything for me anymore so there would not be any harm in taking it away.
Was this a good move by my Dr.?

elephant
03-04-2010, 07:30 AM
Christrd, the only think I can think of is that the doctor is waiting for a month because your WBC might be too low or doesn't want it too low for your treatment with Rituxan. How are you feeling over all? Are you more short of breath? Nose bleeds? More tired? Joint pain? If any of these questions are happening to you.....I would ask your Rheumatologist. I am sure Sangye will be able to help you.

Sangye
03-04-2010, 09:56 AM
Christian, I have the same questions as Elephant. Like she said, it's fine for them to keep you on ctx while you're getting the rtx infusions as long as your blood work looks okay.

I had been on ctx for several weeks before we began rtx in October. We were switching to rtx because my bone marrow couldn't tolerate a therapeutic dose of ctx. (I was getting weaker but the Wegs wasn't being controlled) However, since rtx is not fully functioning for a month my doc was worried about me going that long without a cover drug. He planned to keep me on ctx the whole month while I was getting rtx infusions--hoping my bone marrow would hang on. But within 2 weeks we had to stop the ctx.

Col 23
03-04-2010, 12:23 PM
Hello my global support group
Just a note to say Im thinking of you all and I hope that you all have a good day. Sometimes a bit of aromatherapy - relaxing music - and say no to anything you cant handle helps. A stress free relaxing day
can do wonders for the spirit.
cheers
Col 23

Christrd
03-05-2010, 03:38 AM
Hey guys. This morning I woke up with a little bit of joint pain. Back in September, when this all first started, I remember having joint pain in my legs. A week later, I could not even stand on my own. I do not want to go trough that again.
Im calling my Dr. to see if this is normal or ?? Its only been 3 days since my last Ctx intake. I want to be able to walk at my wedding lol.

Sangye
03-05-2010, 04:08 AM
Yes, definitely call your doc. Any time "original" signs/symptoms return, it can be a red flag.

How many ctx IVs have you had? I don't know how long they take to work. Daily oral ctx takes at least a month to fully begin working and it can take 2 or 3 months to really notice improvement. But backsliding is never good.

Jack
03-05-2010, 05:33 AM
backsliding is never good.
Sangye's motto! ;)

284

Sangye
03-05-2010, 05:35 AM
If I could get down to the floor, I'd be ROTFL. Hilarious, Jack. :D

elephant
03-05-2010, 06:17 AM
Too funny Jack. I second the backsliding. :)

Christrd
03-06-2010, 03:33 AM
I never had a ctx IV. It was all oral meds. They had me at 150mg at first. Then 4 months later they had me at 170mg. Now im at Zero. My arms and ackles feel stressed out, like if I worked out for hours.

JanW
03-06-2010, 05:56 AM
Immediate call to your rheumy is in order Christrd. It's still early in CA...get on the phone, don't wait.

elephant
03-06-2010, 06:09 AM
Chris call now just like Jan said or go to the Emergency room. You are having a big Wegeners flare. Don't mean to scare you, this happened too me and I waited too long.

Col 23
03-06-2010, 10:28 AM
Just a question after reading Christrd about the joint pain. This week I have been in crippling pain with back and legs aches swelling knees, ankles and unable to do bare basics for about 3 days, teary and tired. Alos bruising on upper back. Then woke up on Friday Morning like someone had just cured me. "very little pain". If your having a relapse is that at sign? Like Christrd I have a goal to achieve this year. (Flying to Darwin to help with delivery of daughters baby on Thursday). Also are support stockings a good idea or preventative?

Hope this finds you all feeling well today.

cheers Col 23

Sangye
03-06-2010, 10:42 AM
Col, that type of pain is common with Wegs. Symptoms can rage up like a fire and die down just as quickly. The severity of the symptoms is the clue that it's active Wegs. Don't be fooled by the fact that it seemed to fix itself. If it were isolated to a single joint it might not be a big deal. But widespread pain means widespread inflammation.

When my lungs were hemorrhaging last summer, I coughed up a lot of blood for a few days then it seemed to dry up on its own. The pulmy in the hospital said it couldn't be Wegs-- that Wegs hemorrhaging would progress. My Wegs doc was very upset when he heard that.

Col 23
03-06-2010, 04:10 PM
Thanks for your reply Sangye. Having bloods again Monday and seeing Rhemy on a Wednesday who will probably arrange a few more tests and xrays. Wegener's appears to be so complicated and tricky being multisystemic and you dont know from one day to the next how your going to be feeling. Sangye the lung hemorrhaging sounds serious can you tell me abit more about that as that is one of my primary spots that WG seems to attack.
Hope this email finds you feeling well today.
cheers Col 23

Sangye
03-07-2010, 02:33 AM
I'm glad to hear you've got dr appts coming up this week, Col.

It seems that Wegs likes to play 2 different games with the lungs-- alveolar hemorrhage or nodules/granulomas. Because it's so darn talented, Wegs can play both at once, but most people tend to have a predominance of one or the other.

I have the alveolar hemorrhage type. That was what my lungs did originally, and it's still they're favorite game. They were hemorrhaging for 3 months pre-diagnosis. My only lung symptoms were minor dry cough, occasional specks (~3 mm streak) of blood with coughing, profound/ rapidly progressing anemia and extreme shortness of breath. My lungs sounded perfectly clear and my pulse oxygen saturation was 100% (at high altitude, no less!). Nevertheless, the first CT showed my lungs were completely filled with blood, top to bottom. Blood had been pooling in them for 3 months.

I didn't have any nodules/granulomas until about a year ago, when 1-3 very small ones began to show up on my CTs. That happened while I was having increasing Wegs activity but it wasn't obvious that it was Wegs. We thought I had pneumonia for several months. I finally started coughing up LOTS of blood, indicating alveolar hemorrhage.

Alveolar hemorrhage is more life-threatening and is the harder type to treat. It doesn't respond to mtx or imuran, and Cellcept is not strong enough to stop it. The only 2 drug choices are ctx and rtx.

Col 23
03-07-2010, 05:36 AM
Thank for the info Sangye- Doesnt sound like you have had much luck with the nasty Weggies. How are you responding with the drugs at the moment?
I think I will just expect the unexpected with this tricky weggies and then I wont get any surprises.
Mine was the nodules on the lungs, and they have responded so far with the mtx and the 80mg of Pred.

Cheers Col 23

Sangye
03-07-2010, 06:12 AM
On the one hand it's true that I haven't been lucky, but on the other hand I've been incredibly lucky. I've had so many complications and related conditions that it's amazing I've survived.

With Wegs it's best to take one day at a time. Have goals and dreams, just don't cling to them with tight fists. Be flexible.

Col 23
03-07-2010, 11:11 PM
Great outlook - Ill take that on board.
cheers Col 23

Christrd
04-09-2010, 01:47 PM
Hey guys. I know I havent given much of an update since last time. I did call the Dr. and went to the emergency room. But all they did was keep me there for 15 hrs. and they gave me Tylenol for joint pain. Finaly a real DR. showed up and said that I needed to be put on Ritoxin. Well, that did't go well. My body rejected the ritoxin. So.... they do not know what to do next. Me neather. Oh and top it off, my insurance found out I have a medical condition now so they cant cover me. Talk about kicking a guy when hes down.
So... my question is..... now what?

Lightwarrior
04-09-2010, 01:55 PM
Oh and top it off, my insurance found out I have a medical condition now so they cant cover me. Talk about kicking a guy when hes down.
So... my question is..... now what?

Appeal the decision of your insurance company. Write and call your elected offcials, tell them you need pre-existing part of health care reform to be effective now not later. I'm sorry.

JanW
04-09-2010, 10:59 PM
I agree with Lightwarrior and would add that you should contact the Vasculitis Foundation. Particularly since they are having their conference right in your backyard this summer, they may be able to hook you up with a doctor there. I would assume the next option for you would be cytoxin if your case is serious enough that this drug can't be avoided. I'm sorry this is happening to you, but you should definitely pursue your insurance company -- I'd bet they will cave if you are persistent enough. Document everything -- time, date of your call, person you talked to, and also see whether your rheumy can advocate on your behalf. Don't give up -- you are young and you can fight this!

Sangye
04-09-2010, 11:02 PM
Christian, I'm sorry you're going through this. What do you mean your body "rejected the rituxan?" Do you mean you had an allergic reaction to it? If so, they should give you "pre-meds" of 100mg IV solumedrol (IV form of pred) to prevent that. They often also give benadryl. The hit of pred is absolutely necessary or your body will naturally have an allergic reaction to the genetically-engineered antbody. Even with the proper pre-meds, some people react and require more pred and/or benadryl to tolerate the ritux (these are usually called rescue-meds). It's very rare for someone not to be able to tolerate it with pre-meds and rescue-meds, but it happens. The risk of that is higher the more you get ritux, though--not as much for first-timers.

You have got to get a Wegs doc on your case. While I'm glad someone in the ER figured out to try rtx, Wegs can't be treated with ER docs.

As far as your insurance, assuming they sent you a letter, have it ready when you call California's Insurance Commissioner. They can determine if your company was allowed to resciind the policy or not. Starting this year, they'll be barred from dropping coverage when you get sick, but I don't know the effective date for that. It shouldn't be too hard to find out.

Lightwarrior
04-10-2010, 06:05 AM
If you need support, I will be happy to make phone calls, emails on your behalf. Let me know what you need.