Rituximab Round Two

[Sangye]

I just got the okay from my Wegs doc to do another round of rtx whenever I want. I'm going to start next week, assuming I can get an appt in the infusion clinic.

I did the first round in October-- one infusion a week for 4 weeks. I was in pretty bad shape when I began-- lungs still hemorrhaging, on ctx at the same time (which was destroying my bone marrow), incredibly weak. I was in terrible shape by the time I finished.

I'm going into this round much stronger, so I'm hoping that it'll go the way it does for most people-- no big deal. I've been getting more and more symptoms lately of increasing Wegs activity. This is good timing to nip it in the bud.

I'm determined that this round is going to get the Wegs into remission.

[Jack]

Great to hear that you are getting your second treatment Sangye, it sounds like the best course of action for you especially if you think your symptoms are already increasing. Hope everything goes well! :)

[renidrag]

Good Luck Sangye

[DEE]

goog luck Sangye hope all ok

[elephant]

Sangye your right. It is going to work and you will be stronger and better.....will meet somewhere in north carolina by the beach. :)

[JanW]

I hope you beat me into remission, Sangye. You really deserve it!

[Sangye]

No, no, if I had to choose, I'd be the last. Consistent with my vows.

[Dumpy]

Don't worry about being last lets all just go together.

[jola57]

Good luck Sangye, actualy I will not say luck because I know that you will be worlds better after the treatment and it will not be due to luck but sheer determination and spunk.

[elephant]

Sangye, let us know the date next week. I am so excited for you!

[Sangye]

Thanks, everyone. I'm still trying to get it scheduled.

I'm amazed at how much I've changed my thinking. When I first got Wegs the idea of even taking Lasix was a huge thing, much less chemo, pred, etc.... I fought everything, knowing what it does to the body. I never could have imagined that almost 4 yrs later I'd be asking to have a monoclonal antibody that wipes out all your B cells for months injected EARLY! Everything changes, even minds.

[JanW]

What was it like for you, Sangye, changing your mind like that? I can't tell you how often people ask me whether or not there isn't a holistic treatment for WG, or maybe with just a few changes in your lifestyle/diet/stress levels -- wouldn't your immune system just right itself??? Or people say how horrible it is for you to put chemo into your body. And I'm certainly not someone is would have been surrounded by holistic practioners, the way that you are/were, but for a lot of people now medicine=bad. It must have been quite a challenge.

[jola57]

Jan, whenever anyone ask me or gives me holistic "tips" I let them know about Sangye and her near death experience by trying to "heal herself" with natural medicines. I also let them know that this is one of those unlucky diseases that boosting immune system doesn't help just the reverse and unfortunately natural medicinces are all about boosting and not suppressing. Sangye will correct me if I'm wrong LOL

[jola57]

By the way, a day doesn't go by when I don't get a "have you tried this..." even from people (and family) that have known about my disease for a long time.

[JanW]

Very frustrating! I don't get that from my family, but especially when it comes to the immunosuppressants (chemo) that we have to be on, it seems as though people are like..."but you don't have cancer, why such strong drugs?!"

[jola57]

I simply reply that its worse than cancer because it is a life long disease and I will be on chemotherapy for the rest of my life. That has their jaws drop

[Jack]

Cancer seems to get get all the publicity doesn't it? Even our government rates it above other diseases - cancer patients in the UK get free prescriptions, but us with lesser disease have to pay £100 / year (yes, I know that it still sounds like a bargain if you have to rely on insurance!). The other day someone was running an official survey at my local hospital about the parking facilities and one of the questions was, "Should cancer patients get free parking?" Why should they?

[Sangye]

I tell people Wegs is worse than cancer. Here's my list of why :
1) There's no hope of a cure
2) There are no statistics for a given drug treatment (eg, Drug X given for ___ months is ___% likely to get you into remission)
3) There are no real choices for meds
4) There is no holistic treatment for Wegs whatsoever
5) You cannot take supplements freely on your own
6) You cannot get acupuncture, chiropractic or many other holistic treatments without caution
7) Only a handful of docs in the world know how to treat it
8) There are very few support groups available
9) You might never meet another Weggie
10) There really is no such thing as a prognosis
11) You can tell anyone you have cancer and they immediately understand a lot about it

Cancer is awful. Wegs is awful. We all deserve to park for free.

[Sangye]

Jan, it's been a huge deal for me to enter Medical World. I didn't live there before. Even though the holistic docs who know me support the medical treatment, it's quite painful for all of us. I'm not able to restore/rebuild my body like I could with any other disease.

Anytime I meet someone new in holistic circles, I have to explain it all over again. I can hear the judgment in their voices, like I'm doing something stupid by taking chemo, etc.... Those who don't judge still have a sense of disappointment and frustration. They fight it. So did I. I can't fault them for it. The drugs we take are horrific, even if they seem routine to us.

The medical docs don't understand me as a holistic physician. My holistic peers don't understand me as a medical patient. It's incredibly isolating and brings me to tears quite often.

[renidrag]

We don't want you in tears Sangye, rather in cheers. So when you get the appt for next week, post it and all of us will at the time of the treatment send our energy to you. It is the least we can do.
Dale

[Sangye]

You're so sweet, Dale. I'll definitely do that.

Each of us has something that makes the Wegs more painful. That's mine. It has made me less judgmental, though. Good things come from breaking through old patterns.

[elephant]

Yeah! No tears, and that is a nag from a friendly little elephant! You continue to make people smile and laugh. It is very frustrating...sorry you are going thru this, but they will never know. But we understand and that is why it is great to here at this forum.

[Sangye]

I just scheduled my first infusion for next Wed (March 3). Gotta start bright and early (8:30 am), which means getting up at 5 am. Well, at least the benadryl knocks me out for an hour or two during the infusion.

I scheduled the following 3 on Tuesdays so hopefully I can get in to my therapist by Friday each week. The last time I did rtx I was too sick to see my therapist for the entire month. The combination of a big hit of pred, feeling like death and no therapy made October a nasty month for me!

[elephant]

Yipee! So glad you start soon! Recovery is on it's way! So happy for you Sangye! :)

[onatreetop]

Wishing you a better experience this time. Going in strong will make a big difference. The happy face helps too. Sending you all that I have at the moment! Relief is on the way after the investment. Go in postitive and laugh with with all the others. It always makes me feel better joking with all the help and others waiting and waiting. Passes time in a good way. Some people think I was crazy but I actually suggested boardgames and cards. But that only works if the people are scheduled the same day and time so it is tuff. But might as well make the best of it right?? I have learned so much in this last year from all you andfrom all the time in the office waiting. I am no longer afraid to talk to anyone or suggest things to pass the time. Some people are very open and surprised others say no thanks and thats fine too. Anyway, the pred is making me rambal again. Hope you hang in there and walk through this one quickly and find remission shortly.

[snooz23]

Sangye, first off so happy you are off for your second treatment. I hope it goes smoothly and really knocks the wgs down and out this time. I am also curious why you are much more keen on Rtx. vs. cytoxin? Are there a lot less toxic properties to rtx? I know you had a horrible experience w/ reaction to it and I am just trying to weigh some of my options before my visit to Cleveland on Tues. They will be laying out some treatment change options to me and I know these will be two of them. Another one thrown my way is switching to infused mtx. vs. pills. I am sort of leaning that way however I am wondering about rtx.? That may be the drug that really gets it for me? Just curious to the pros and cons you weighed for rtx. treatment. I am like you in that I cannot believe I am at a point in my young life that I am almost asking for these horrible drugs!! By the way I also enjoyed your list of why wgs. is "worse"/different than cancer.

[Sangye]

Onatreetop--I'm as chatty in real life as I am in this group. I enjoy talking to the nurses, other patients, etc... I never met a stranger, as they say.

Snooz-- Rtx and Ctx are totally different classes of drugs. Here's a brief summary :

Rituxan (rtx) = monoclonal antibody that binds to your B cells (WBCs that make antibodies) and destroys them. It's not chemo and doesn't have the toxic side effects and damage that chemo does. It directly targets the B cells.

Cytoxan (ctx) = heavy-duty chemo that controls Wegs by its side effect of severe toxicity, which suppresses the immune system. Major side effects, major damage to DNA, collateral damage, infertility, etc....

Dr Langford will decide if you need something as strong as ctx or rtx, or if you can use something milder like mtx. She'll clearly describe the pro/con of each.

[JanW]

Thanks as always to Sangye for her excellent description of all of the meds.

As I said in another thread, we Weggies are clearly all about -- "what do you take, what do you take?" and, in my specific case, I can look at Weggies here who have had SS surgeries and SN (saddle nose) surgeries, and have seen that they have had them done in totally different ways. Do you do the laser or the cutback on the SS? Do you use ear cartilage or rib cartilage to rebuild the nose? I think that the important thing is that any doc or surgeon at any time can justify what is being done in your case, and that you are educated enough to say -- why not cytoxan or why not mtx? In my (very limited) experience with my docs, this has made a world of difference. They treat you like a smart, sensible grown up, and you have a much better conversation about your health.

[pberggren1]

Hey Sangye are Rituxan and Rituximab the same thing? And what is the difference between Cellcept and Rituxan?

[snooz23]

So if it is available to me I may even want to consider changing to rtx. from mtx. just because of the chemo classification. The one downfall of the rtx. that they have discussed w/ me is that they really don't know what the long term effects will be? I appreciate your clear explanation, it is helpful.

[Sangye]

Jan-- you are right on about asking docs questions. We have to be informed and know what we're taking and why.

Snooz-- Rtx has been safely used for Non-Hodgkin's Lymphoma for at least 10 yrs. Many more rounds than we would get. But it's true that they don't know the long-term implications for rtx and Wegs. My doc is also hesitant to use it more frequently on younger people for that reason. I'm 46 and he considers me young enough to use it as sparingly as we can.

Using ctx in a young person comes with its big problems, too. It's the "devil you know vs the devil you don't" scenario. Personally I have a better feeling about rtx than ctx. That's entirely a personal gut feeling thing, though.

[JanW]

I'm with Sangye on the gut feeling about rtx vs. ctx because of the toxicity (although obviously I would take it if that was the only thing that would help me). As for rtx vs. mtx -- I think if mtx works for you, it's got an excellent profile in terms of safety and long term use at least as far as RA patients go. My rheumo indicated to me that he might try it on me again even though my liver numbers weren't great -- it might just mean that I couldn't drink at all or take ibuprofen while on this medication. He likes it because of its ease of dosing and safety profile. He likes rtx too -- his hospital was one of the test centers -- but I think the combination of the fact that its an infusion and the insurance company hassles makes him at least try out the easier thing first.

[Sangye]

BIG price difference between mtx and rtx. Mtx is super cheap.

As far as I can tell, it doesn't appear that they choose between Mtx and Rtx too often. Mtx is used with milder disease or to maintain remission. Rtx is used for severe disease or to induce remission.

[JanW]

I think you're right Sangye -- more likely a choice between cytx and rtx. I know that my insurance company doesn't require alternate therapy "failure" (but does require a precertification and a letter from your doc), but many still do, and most likely the drug you would have failed on would by cytx, because its the most commonly used drug for aggressive disease.

And yeah, I figured mtx was wickedly cheap when it was in the lowest level of my prescription plan's formulary (I think it's $7 a prescription).

[Sangye]

I'm off for the first rtx infusion today. I'm a bit scared about how weak I got the last time. I tried to do a bunch of stuff the last few days in anticipation of being wiped out again. I hope it doesn't happen, but I'm prepared if it does.

[elephant]

Good luck Sangye, this is a good thing for you. I am crossing my toes for you that you don't feel weak, but stronger in the next few days. I will be thinking about you. :)

[JanW]

Good luck, Sangye. Stay strong!

[Jack]

We are all thinking of you Sangye! :)

[Lightwarrior]

Sending you light and energy. I'm glad your prepared

[Sangye]

Thank you everybody-- it's so nice to come home to messages like this. :)

Just got home... Went exactly like the ones in October. Turned totally pale within an hour, legs are like spaghetti. The pharmacy was delayed in sending the rtx to the clinic, so I had 100mg IV solumedrol and 25mg Benedryl on board for at least an hour before the rtx was started. I have a feeling much of this reaction is from the pred. As soon as it went in the IV I could feel it. Hard to describe the feeling--kind of like a massive hit of caffeine. Within 30 minutes my jaw was clenching involuntarily and I was shuddering. All this before the rtx.

I tell you, pred just doesn't live in my body well at all.

The woman next to me was getting an infusion for scleroderma. I'd seen her in October and she's world's better. She didn't mind being on pred. It obviously hadn't changed her body at all-- she was slim, no double chin, etc.... We're all so different.

I sure hope it doesn't continue this way for the next 3 weeks. I was in pretty bad shaped going in and was so much worse coming out! I told the friend who drove me that I felt like I got a reverse blood transfusion.

[elephant]

Glad you made it back in one piece Sangye. Have a good rest tonight, hope your feeling better by tomorrow. :)

[JanW]

Hope you feel btter tomorrow, Sangye. Hang in there!

[Sangye]

I'm doing better than I would have expected today. I forgot to tell you all that yesterday I woke up with hints of a stomach bug. It didn't really escalate the whole day until we were driving home from the infusion. Not far from home I got really bad abdominal cramping and diarrhea. We had to keep stopping. I can tell you the location of every McDonald's from Baltimore to my house. :D

By evening I was really swollen from the big hit of pred. I took a Lasix and was up all night peeing out tons of fluid. (Wow, this is really a detailed post, isn't it? :D) I felt much better all over after that. Fluid buildup causes other symptoms in me that no one can figure out. I slept well. I'm going to repeat the Lasix each time I get an infusion. It really cut down on the sweating and other pred symptoms.

About 1/2 hr ago I started getting a major facial flush out of nowhere. My temp is normal but my face is very hot and red. Not sure what's going on--probably will pass on its own. I'm well-hydrated.

The woman with scleroderma I spoke with yesterday helped me plant a new idea in my head. Her IVIG treatment was working so well she was recovering movement, strength and flexibility. She kept saying "My body is good at reversing." That resonated well with me. All this time I've had a hard time imagining getting stronger because I don't know what it'll look like. But just thinking about "the old me" seems out of reach, too. The thought of reversing the disease process, drug side effects and any damage is somehow more tangible and gentle.

[renidrag]

Good to hear from you Sangye, hope all is well today.

[DEE]

glad to hear u got through it hope u recover soon symphay with face problem ive had swollen left side off face since sunday consult up pred to30mg and given two extra anti b until gets bloods back also tells me he does not think cyclo working and may have to change :- already done six month on methaxtrate plus four on cyclo
my doc can understand why i have nornal temp to with all the infection going on too

like u say sangye nothing simple in this game!! wishing u once again a speedy recovert DEE x

[Sangye]

Oh Dee, I'm sorry to hear the ctx may not be working. But you should be able to do Rituximab if that's the case.

I can't complain about the face thing and it's already going away. It wasn't painful like what you're enduring. I sure hope things turn around for you.

[DEE]

thanks sangye BARON just come in so had a moan to him too face like this two years ago BARON says ear looks like rugby player or boxer good job i know his sense of humour (should do after 34yrs married ) he can always make me laugh when i feel like crying
my own doc said last night rtx might be next move we will see ............ take care of u DEEx

[Jack]

I'm always very suspicious when I hear about Wegs patients with infections. It could be due to immuno-suppression but equally it could be a Wegener's symptom, especially if it does not respond to antibiotics.

[Sangye]

I'm the same way. I've lost a lot of time being treated for infections (pneumonia, tonsilitis, etc...) when it was all Wegs.

[DEE]

hi jack not got just infection several of wg symptoms to nose running crusting in nose never gone away headache to joints swollen sinus full and runny nose eyes watering it was from the face problem two years ago and biospy ct and mri scan dtx wg orignally plus postive biopsy from left leg
only had stronger anti b since last night consult ringing me fri morn to make mind up about iv anti b as they worked better last time

[elephant]

Sangye glad to hear that. I think it is the prednisone that made you flush or the RTX. I think it is going to work Sangye. your already showing signs of being stronger.
Dee- sorry the cytoxan isn't working....hopefully the other drug that Sangye takes will work for you.

[Sangye]

Must've been the rtx. I get a different type of flush with pred--all over and very distinctive. Doesn't last like that. But it's gone now, so must not have been a problem.

I sure can tell I had 100mg solumedrol yesterday. I just made a frozen pepperoni pizza for lunch and thought "Wow, I think salmon would taste good on it." It sure did! LOL I don't eat like that everyday....

[gwenllian111]

Sangye - we're Ritix buddies! lol. My last infusion was in October, and i'm having more in a few weeks time too!

It's great stuff. Fingers crossed you will continue to get stronger and fitter every day now. x

[Sangye]

Ritux buddies--I like that. I hope that soon we can both say "Wegs? What Wegs?" :D

LOVE the pic of your baby girl. She's adorable. :)

[elephant]

That would be my dream for you both and everyone who has this stupid, ridiculous, thoughtless @#$%, party poo per ..... slimy disease!

[Sangye]

You summed up my feelings about Wegs perfectly.

[jola57]

I was just at my rheumys today and ... he doe not want me on Rituximab, he is cautious and doesn't think that enough studies have been done on rtx. Also he said that it definitely is not paid by our provincial health insurance. Phil I think you mentioned something about Saskachewan insurance giving it free. for me it would be $20,000. I think I will stick with mtx.
I am so glad you were able to get it and that it is working for you Sangye. i trully hope you have found a way to get better now. Sending big Hugs

[gwenllian111]

Sorry to hear that Jolanta? When I was first given Ritix in 2007 my Rheumy had to go to the NHS board to fight my case, because it was so expensive. but apparently it's a lot cheaper now and given more routinely to patients now so it's not so hard to get for patients (in the UK anyway). I had no options left by then though, I became totally intolerant to any cytotoxics and because the WG was affecting my brain and bone marrow, it was a last resort for me.

Sangye - she is a cutie, but she's a little monster for now sleeping!! LOL! What id do for a nights sleep!!! :-)

[elephant]

She is very cute Gwen! My kids are 4 and 8, they sleep through the night most nights. My 4 year old gets me up sometimes at 3am, because she is hungry....what you ate all day yesterday???

[Sangye]

Jolanta, I still think it's worth a call to the VF to ask about getting a VF specialist involved in your care. It seems odd to me that all the vasculitis centers are using rtx and he's not willing to.

I've had a LOT of docs since I got dx'ed in 2006 but have never had a doc who uses drugs more cautiously than my JHU doc. He feels there's adequate research on its safety/efficacy to justify several rounds of treatment. Beyond that (ie, using it indefinitely, like mtx/imuran/Cellcept) he wants more research.

But very few people are in that risk pool anyway. Most of us are just getting our first or second round--well within the known safety level.

The drug manufacturers have programs to provide rtx for free if your insurance won't cover it. I don't know how that works in Canada, or about getting it authorized if your doc fights for it. I just want you to have the best chances for the best recovery and don't want anything or anyone standing in your way. Maybe it's mtx and maybe it's rtx. I think the choice should be yours.

[JanW]

I wish you luck, Jolanta. Don't know how it works with other country's health insurance systems, but here more doctors are fighting for rtx and there is even less talk of patients having to fail on other cytoxics before they can get on it. I know my insurance company doesn't require failure. And Sangye is right -- all of the research proves the safety -- but as importantly the efficiacy of this drug. But I also know that whether in the US or other countries, the choice unfortunately isn't up to the patient.

[DEE]

got bloods back looks as though anti b beginning to work wg consult rang this pm said to contact monday if i had any prob or to go straight to A &E if over weekend
hubby and i have an appointment with him thursday morning to discuss treatment DEEx ps face does not look like i have done so many rounds in a boxing ring today !!!

[Sangye]

Glad to hear you're feeling better, Dee. I hope you have a restful weekend away from the boxing ring.... :D

[Sangye]

Infusion #1 of Ritux was 2 days ago and I feel like death warmed over today. TOTALLY wiped out. I didn't feel so bad yesterday so I did a couple of errands. My legs were quivering before I was done.

Today I woke up in bad, bad shape. I know it's the big hit of pred that beats on me. I have no idea what part the ritux plays. It's depressing to have even less function than normal. I'm doing my best not to let my fears of the next 3 treatments get the better of me. Very hard. I don't want to relive October for anything. When my mind says "See? It's all going to happen again" I literally have to say "It isn't happening right now. It's not certain." Got that from The Gift of Fear. "The very fact that you fear something is solid evidence that it's not happening."

[JanW]

Sangye, I hope you feel better soon...I'm sure it's scary. Hope the rtx works for you.

[elephant]

Sangye it is going to work. Your body is just adjusting from the infusions you just got...... to kill those @#$$ WG. Give it another day and OOOHHHH I feel a little baby so tiny...you can't see it.... Just let your Rheumy know how your feeling, it will make you feel better.
Sleep good tonight. :) You have two loveable dogs who are with you. :)

[Sangye]

Thank you. I'm so wiped out I'm sitting here crying. You know how you get when there's just nothing left?

[elephant]

Wish I could be there to give you a hug! Here it goes I am reaching ...HUGGED you!
I know Sangye, especially when your not feeling good today. I will be praying for you and thinking about you tonight!

[Lightwarrior]

Sleep well Sangye, think of all of us forming a circle around you to keep you safe. You can feel our warmth and you know it is safe to dream yourself into a comfortable place while the rtx is healing without fear. I hope you wake up knowing that we are still there right behind you to be strong for you. Even with your eyes shut you can feel the warmth of all our good intentions...shhhh sleep well.

[jola57]

A special lullaby from all of us to Sangye, sleep well sound, get some strength back. I am so sorry about your feeling so bad, please know that even though we are all so far away, the groups genlte hugg has gone your way. take it to your heart and let it warm you all the way to your tippy toes.

[Jack]

I've got my arm around you Sangye. Things will look up in the morning, hope you get a good night.

[renidrag]

little late but a hug from me too.

[JanW]

Me too, Sangye.

[Sangye]

LOL-- you guys are all so amazing. I'm reading your kind words this morning and now I'm sitting here crying because you're so beautiful!

I slept for a whopping 12 hours. I'm better but noticed my legs trembling after standing only 2 minutes. I have absolutely nothing that needs to be done today, and that's what I'm going to do. Thanks again-- :)

[elephant]

Glad you got a good night sleep. You now can start your full time job, since you have absolutely nothing that needs to be done today. :)
P.S 15 minute potty breaks only. :)

[Sangye]

LOL-- I just waded through ALL the posts and then yours popped up! (A nagger's work is never done...)

[moyan]

There are so many arms around you so I use my feet to hug you. Tomorrow will be even better!

[elephant]

You crack me up Moyan!

[Sangye]

LOL-- feet, arms, cabbage rolls... This is one heck of a good support group! :)

[DEE]

hi sangye no more rounds in the boxing ring today !!!!!! glad u had a good sleep been couch potatoe myself today enjoy your rest DEE \

[Sangye]

I'm off for infusion #2 of ritux. I was still feeling like death warmed over yesterday. Seriously weak. Scary weak. I got to my chiropractor. I had some HUGE misalignments that cause "dural torque" in the CNS. Basically shuts everything down. 15 minute treatment and Ba-da-bing I'm feeling like I was before. Incredible, huh? I really miss working as a chiropractor....

[elephant]

So glad you are feeling better Sangye. Hope your infusion goes well. :)

[DEE]

take care of u hope all goes well DEEx

[JanW]

Good for you, Sangye. Let us know how it goes!

[moyan]

I'm off for infusion #2 of ritux. I was still feeling like death warmed over yesterday. Seriously weak. Scary weak. I got to my chiropractor. I had some HUGE misalignments that cause "dural torque" in the CNS. Basically shuts everything down. 15 minute treatment and Ba-da-bing I'm feeling like I was before. Incredible, huh? I really miss working as a chiropractor....

That is great Sangye!! If sore after treatment, try to remember how you felt after this one.
By the way, how do you know you ask a good chiro? I am seriously thinking of trying that for my ridiculously sore back. And I know, there are some top of the class and.... in every profession.

[Lightwarrior]

Okay Sangye, you are back in the circle, warm light is keeping you suspended in a nice soft cloud. You will be in my thoughts gentle one.

[Luce]

Hi Sangye

I meant to post earlier when you mentioned you think the IV pred was causing you to feel so bad. When I had my ritux a couple of weeks ago I'm sure the nurse said she was giving me hydrocortisone and not pred - does this sound right and if so, could you not ask for this instead?

Hope you're ok

Luce

[Sangye]

Thanks everyone-- I sure appreciate your support.

I feel so terrible it's hard to explain. White as a sheet, trembling all over, feel like no muscles are working, etc..... The friend who drove me came back to check on me after I'd been on the IV for about an hour. She actually gasped when she saw me. I'm that pale.

My Wegs doc didn't order blood work last week or today. I asked for it today. We did it at the end of the infusion instead of before, like we did in October. Each time I did an infusion in October I had major increased urination that lasted 1-3 days. I felt the IV solumedrol was spiking my glucose, as it did in 2006. My Wegs doc said no, no, it's just the fluid from the IV, even though they don't give you a big bag of fluid. My glucose would be fine the next week, but by then I also felt normal again.

Today's glucose after the IV was a whopping 262. (My normal is 90-- nice number) Proof again that WE WEGGIES know our bodies best and that we're not crazy when we have symptoms that make no sense. He's a good guy and will listen to me on this from now on. But you know, it's tiring.

[JanW]

Wow, Sangye. What's the solution to this problem going forward?

[Lola]

Sangye, when I had my first infusion, I developed an itchy throat. I started getting restless and very, very warm. The nurse stopped the infusion, I got better. She gave me more solumedrol and 25 of Benadryl. Made me feel horrible for days. (I was pretreated with Benadryl, 1 gram of acetaminophen and either 25 or 50 mg Benadryl - don't remember. She mentioned that the factory rep had mentioned that some centers had switched to dexamethasone for pretreatment, and that it seemed to keep allergic reactions in line. Also, the dose is SMALLER. Right now I don't have access to your handy equivalent chart, but I do believe that the 20mg of dexamethasone is equal to 80mg a oral prednisone. Please correct me if wrong. Bottom line, I felt better after the 2nd infusion. But still very, very weak, shakey, pale, headachey and weak, weak weak for 10 days afterward. Don't think I could have stood to have 4 infusions/1 week apart. You're one tough cookie! Hang in there and give yourself permission to be sick yet again.

[Sangye]

Lola, I've been getting pretreated with 25 mg Benadryl and 100mg Solumedrol (equiv 156mg oral pred). No allergic-type reactions, thankfully. I'm so sensitized to pred-- each mg acts like 10. So each IV is like 1,560 mg pred. Who knows what part the rtx itself plays!

My Wegs doc had said he was willing to drop to 80 mg solumedrol, but no lower. I haven't wanted to mess with a good thing (ie, no allergic reactions) even though it's so rough. I've now witnessed 2 anaphylaxis reactions to iron infusions. One was today and quite severe.

As saddened as I am that you've had such a hard time after each rtx infusion, I'm comforted that your symptoms match mine exactly. I haven't heard many people describe how they feel after rtx since it's so new. Of course it's highly variable among each of us, but it does help to see commonalities at times. This round is WAY worse than October. I wasn't like this until the last 2 infusions. So it's even variable within the same person.

[elephant]

Thanks for describing your symptoms after each infusion. It kinda reminds me of when people go through IV chemo, but yours sound more violent! Wishing you a better day.

[Sangye]

http://ihasahotdog.files.wordpress.com/2010/03/funny-dog-pictures-teknical-diffikulties.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(http://ihasahotdog.com/)

[elephant]

That is a good one! Sangye you amaze me, even with your" teknical diffikulities". Keep them coming. :)

[DEE]

thinking of u DEEx

[Sangye]

If I were able to work, this would be me today.

http://icanhascheezburger.files.wordpress.com/2010/03/funny-pictures-cat-calls-in-dead-to-work.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

[elephant]

Too funny Sangye.....I feel like that today....I went to my pre op for gallbladder surgery and the nurse took my temp with the new temporal that scrapes across my forehead and it was 100.1. Then I asked to take the normal oral ( to take my temp) and it was 98.0F what is up with that??

[Sangye]

Wow, that's terrible reliability! What explanation did they offer? Do you feel feverish?

I'm sorry you feel bad today. I hope it clears up by your surgery. Will they still do it if you feel lousy or have an elevated temp?

[JanW]

When I was in recovery last week they did temporal (forehead) and then on the ward they did the old under the tongue -- so even in the same hospital it varies. Have no idea which is more accurate though.

[elephant]

I feel hot ( hot flashes) especially after drinking coffee. No I don't feel feverish, just stuffy, but no yellow or extra drainage. It is 15% humidity in our house. I think I will stick with the oral one. I think they would do surgery, as long as it is not 100.5.

[Sangye]

Do you get like that when Wegs has its marching boots on?

For me, that's either Wegs, pred or exertion.

[elephant]

I'm guessing it's the prednisone, exertion and a little of Wegener's. I think once I get this gallbladder out, I will feel better. I did the mental body check (WG) that you and LIghtwarrior did.

[DEE]

sangye love the cat pic sending a pic with my sicknote to work !!!!!!!!!!!! DEEx that shows how felt monday :- hope u feeling better today just about to get ready to go and see wg consult this morning will let u know !

[elephant]

Dee, good luck today with your WG specialist and hope everything turns out good! :)

[Sangye]

Dee, I'm glad it made you laugh. I hope the Wegs doc can help you sort things out today. I'm very glad you're going.

[Sangye]

Well this week is going exactly like last week: Rtx infusion day= unbelievably bad. Day after= better. 2 days after= unbelievably bad again. Grrr! This is so frustrating.

On top of the incredible weakness, my intracranial pressure feels high again-- eyes are swollen, hard and painful, headache. I can manage it with diuretics at this point but I feel lousy. Lousy lousy lousy. There, I said it. I feel better. Ironically. :D

[elephant]

Is your next round next Tuesday? That does not sound good Sangye. Did your dogs finish thier raw neck bones?

[Doug]

Hugs from me, too, my friend. I know that exact feeling you express, and kn ow the love and concern of friends and family goes a long way toward keeping one on course to recovery. Hugs again, my friend. You can't have too many, I've found.

[DEE]

im back !!!!!!!!!!! arrived hosp 10 am left 2 pm
had to wait short while for wg case meeting to finish
then introuduced to three 2nd year medical students which took med history general health and symptoms
also asked about how it affected family on daily basis etc
hubby with me today too had bloods etc done bettter results bloods in urine improved thinks face rash and vascu rash on chest a combination of active wg and infection
went through all medcation decided needed to up cyclo back to orignal dose and up preds again
thinks i should give cyclo alittle longer as i have acess to wg cosult on daily basis if needed twenty mins away
seeing him again oin three weeks to see own doc every week and repeat bloods every two weeks !!!!!!!!!!!!!!! thats about it
im very very tired now
hubby just brought me a pizza in food at last :-
the one big bonus we both said came out of today three young students who had never heard of wg this morning now know alille about it and what its like to live with it
thanks for your good wishes sangye take care of u best wishes to all DEE x
still no work!!!!!!

as still will have back up on daily basis with wg consult

[elephant]

Glad your visit went well and your in good hands! :)

[Sangye]

Dee- whew! I can rest now, knowing you're in good hands. I think the increased cyclo and pred will get things under control quickly. Get some rest (and pizza)!

Doug-- thank you, friend. I so appreciate your kindness. I needed that hug!

Elephant-- I think the increased intracranial pressure is unavoidable. Two things cause it: sudden increase in pred dose and sudden decrease in pred dose. HA!

The dogs ground their way through their neck bones yesterday and just enjoyed more. I love to see them so happy.

[DEE]

dont know where last sentence came from think combination of tiredness and preds or lack of concentration also eating pizza at the same time DEEx

[DEE]

thanks sangye will catch u later my bed bekons take care DEE X

[moyan]

We suffer with you, Sangye, and we all chime in to help relieve pressure: Lousy, lousy, even more lousy. (Did it help?)

[Sangye]

LOL-- totally helped. :D

[elephant]

Moyan too funny!
Dee- good sleep!
Sangye - fell better real soon or else! Did I scare the lousy out of you?

[DEE]

AWAKE slept for ten hours missesd the alarm for hubby getting up for work so did he !!!
ive never slept or so long in ages think through physical exhausion and possibly relief as i asked and got answers to a few problems
writing down in diary helps sangye hope u are feeling a bit better today
im going to just chill and u never know might manage to stay awake too.
taken extra cyclo and preds so we wait and see
thanks everyone for your support tske care of u DEEx

[DEE]

ps forgot to say
told wg consultant and students how important this forum and u all have been to getting me through my denial period
through bad days and to talk when having good days thanks DEEx

[Sangye]

I hope you get good rest today! :)

[jola57]

Dee, when I was taking ctx and pred I was alternating between exhaustion and insomnia. Glad you have gotten a good nights sleep.

[DEE]

jola 57 know how you feel as my hubby would say she as high as a kite or as low as the puddle at the moment as high as kite head wise but the body say different DEEx

[moyan]

Good morning. Nice to see Jola, I am the same way. Misery likes company :)

[jola57]

Dee, actualy I wish for the days of the highs, at least I had the energy and could conquer the world and be another Napoleon. Now sadly just like moyan I am a puddle of misery. I sleep at a drop of a hat, ache all over but say with a smile "hey I am down to 7mg pred"

[Lightwarrior]

At 45 mg of pred I still have the racing mind but my body is too weak to follow through. In other words my brain is writing checks my body can't cash. VERY frustrating, I sleep 2 hours at a time, taking a shower makes my back and legs so weak I have to rest. WBC up to 3.9 and I'm back at work today but confing myself to my office since we have MRSA and C-Diff in the unit.

[DEE]

jola 57 my heads on high increased preds and cycl preds increase to 50 mg body not quiet caught up DEEx cant get down to less than 20mg before i have problems kick in never mind tomorrows another day !

[elephant]

I didn't get a decent night sleep until I went down to 10 mg of Prednisone. I still have insomia on/off even with the Prednisone 10mg.

[moyan]

Jola,I was so dissappointed, thought I would be right in the cherrybowl with less pred, instead I am right in my recliner:)

[moyan]

Hi light, I can clear the catlitter, but have to take a break before replacing and clear out :)

[moyan]

Elephant, one doc wanted me to test for sleep apnea. Disaster: The cats saw the cord and said yahoo! new toy, so I put it on the floor and covered it. Next thing it was disconnected at 11 so now I have stopped evening waterdrinking :)

[elephant]

Moyan, I didn't know that there was a sleep apnea test at home. Wow! Those darn cats! :)

[renidrag]

Day 31 off prednisone and still have to nap in the pm. Worse part is I fall asleep around eight in the evening
and sleep through the night. I am hoping Cytoxin has something to do with it as I hope to be off that by April and
probably put on Imuram. I hope. Got to go now, zzzzzzzzzzzzzzzzzzzzzzzzzz.
Dale

[moyan]

Hi. I actually think it is WG affecting my bladder so I have to get up every 2nd hour. So now I have 2 excuses, preds and cats!

[Sangye]

Lightwarrior, I was like you on the high doses-- far too weak to act on the pred energy. It was only evident in my mind, which raced endlessly. I'm not much better at this point. The big hit of pred each week doesn't translate into physical energy at all. In a way I'm glad, because I know it would be spending energy I don't have.

[Doug]

Dee- That was my experience, too. It's terrible we have to experience WG, but it is great we can help others down the line. It would be great if each of us could be a Cindy Abbott, but, in truth, each of us has the potentional to help hundreds, thousands of others by sharing our experiences with people on this forum or other ways we may not even realize.

Each of three hospitals - general, regional, then a university teaching hospital- had staff who'd never heard of WG till I came through. Because I came through, dozens of medical care professionals had a chance to ask questions, check the internet for information (and new questions!), see the effects of the disease when they came in a nearly dead package, and better prepare themselves to better serve those in need. You might be surprised how many people learned from contact with you- or people who had contact with you! The university hospital put the details of my case on the internet, so thousands of medical care professionals were able to follow my progress each day.

I don't think this is unique to just my case.

[Doug]

Elephant, one doc wanted me to test for sleep apnea. Disaster: The cats saw the cord and said yahoo! new toy, so I put it on the floor and covered it. Next thing it was disconnected at 11 so now I have stopped evening waterdrinking :)

LOL ~ new toy indeed! Cats!

[DEE]

sangye hubby and i said if only one of the three students remember our conversation its a forward move i meet someone i had not seen for a while today and she said remind me again whats wrong with you !!!!!! when i told her she said its like cancer then !!!!!! i explianed the best i can but sometimes get tired of trying the repiy
well your looking well
i want to say yes its just taken me three hours to get myself out of bed
sort meds out
have breakfast
then struggle to get clothes and shoes on
and when i got back had to rest
i only went for short walk across roadd to get the paper !!!!!!!!!!! ot feeling sorry for myself its just hard when people dont understand
i might look fine but on the inside screaming does it get easier to cope with?
anyway enogh about me how are u doing today ? DEEx

[DEE]

oops preds effect sorry about miss spelt words
and the lack of putting what i mean
by easier to cope with i mean explianing to other people DEEx

[Sangye]

It's gotten a little bit easier to cope with it, but not much. Many people who see me often either have only known me with Wegs or have become accustomed to me being like this. They've forgotten how I was before but I haven't. That "me" is still inside this body, is still completely shocked to see what I look like, what I can't do, and is still trying to get out. I scream on the inside a lot, too. They don't understand what this is like, and they sure as heck don't understand how good they've got it.

Therapy helps. It's taught me how to honor what I'm going through whether or not anyone else does.

[Doug]

Dee Fine! Though, erm, I had to put on my shoes in steps, the walk over to the care center (1/2 block) to visit my mother nearly left me breathless, and... That was my morning. Lots of huffing and puffing, aches and pains, but nothing I couldn't handle. Don't worry about it. You are experiencing a typical weggie day, I fear! It is hard to "help" others see just how serious our disease is when we ourselves oftentimes look "normal", especially when we are in remission.

[DEE]

thanks doug and sangye yep a weggie day indeed tried to get BARON to take me out for morning he said 7.30 am he said wait and see when in fact only managed the paper walk and sit and watch the rugby the rest the day maybe tomorrow !!! night to u both DEEx

[elephant]

Dee, glad you are listening to your body. You have yourself a nice night.

[Lightwarrior]

It's gotten a little bit easier to cope with it, but not much. Many people who see me often either have only known me with Wegs or have become accustomed to me being like this. They've forgotten how I was before but I haven't. That "me" is still inside this body, is still completely shocked to see what I look like, what I can't do, and is still trying to get out. I scream on the inside a lot, too. They don't understand what this is like, and they sure as heck don't understand how good they've got it.

Well put Sangye, very articulate. Certainly describes almost where I am at right now. People who know me still expect me to be the "normal" old me. The guy in the coffee shop at work still has intructions to call the unit if I buy coffee, they don't understand that caffeine won't make me zoom around, they are safe (lol). I am shocked to see what I look like, I work with supportive people who tell me this will pass and I'll be back to "normal" soon.

I never wanted to be the person who talked about everything that was wrong with them. Most of the time, I say I am doing great. I am so tired of not doing "great".

[Sangye]

I go for the 3rd rtx infusion on Tuesday. After doing little more than sitting in my basement for the past few days, I felt like I was doing better. Today I went to our temple for a few hours and discovered that I'm in worse shape than I thought. Just walking the 50 ft to my friend's car (no way I could drive myself) was enough to make my legs quiver. Even just praying for 2 hrs was exhausting. I can't believe I have 2 more infusions to go-- I'm only half-way done???

I feel discouraged. My new normal keeps getting worse, not better. It's been many weeks since I went to the pool. Just taking a shower is enough to make me start trembling. This sucks.

[DEE]

lightwarrior my saying is "im fine" just had jeans crisis this morning with added preds etc they just dont fit thank goodnesss for legging and jogging bottoms :-
and just to add to it my friends the hot sweats are back or as i some times call them " power surgess "
hubby made me laugh said to think hat the jeans had srunk not that i got bigger !
sangye how things going today ?
elephant body says STOP today DEEx

[DEE]

sangye ditto since increased cyclo and double preds = useless went to carboot sale this morn walked very little = three hours sleep also = when woke u nice surprise a visit from my son who at uniiversity because its mothers day
hubby cooked lunch then visit from daughter too helpt to remind me why i have to keep trying to move forward
i wishing u all the best thinking of u DEE x

[elephant]

Sangye, it is not fair you are going through this. Praying and thinking about you.

[Lightwarrior]

I feel discouraged. My new normal keeps getting worse, not better. It's been many weeks since I went to the pool. Just taking a shower is enough to make me start trembling. This sucks.

I'm sending you light and warmth. I'm sorry it sucks, the light you send out helps the rest of us weather our sucky times. I hope you can feel our strength to help you now.

[JanW]

I'm sorry the rtx has laid you low, Sangye. Wishing you peace and strength.

[DEE]

still thinking about you wishing u all the best tuesday DEEx

[Sangye]

Thanks, everyone. I'm steeling myself for tomorrow....

I also just got a pedal exerciser-- like bike pedals without a bike. You can use it for pedaling with your legs or put it on a table and use it for your arms. I'm hoping it will help with circulation and maybe burn some calories. I can't really do any exertion, but the fluid accumulation in my legs might be lessened by contracting the calf muscles a little bit. They're very inexpensive--around $25-- and you can get them at places like Walmart or some drug stores.

[elephant]

Good for you Sangye. Good luck tomorrow. You get a day off tomorrow. I will try to cover you ...but can't replace your wisdom. Have a nice night. :)

[Sangye]

LOL-- thanks for the time off, boss! :D

[Jack]

I also just got a pedal exerciser-- like bike pedals without a bike.
Please let us know how you get on with it Sangye, I nearly bought one myself the other day, but my wife said I would never use it and put me off. I need something just to keep some movement in my legs.

[Sangye]

I tried my pedals last night and it was great! I was amazed at how easy it was and also how many other muscles I used/ stretched (eg core). I was pedaling while reading email. If I could do this in the condition I'm in right now, anyone could.

I thought of you, Jack. It's the perfect thing to keep circulation and build some muscle easily without risking a fracture. I like that it can be used for arms and legs.

[Jack]

Thanks Sangye.
Something like this? Pedal Exerciser: Amazon.co.uk: Kitchen & Home (http://www.amazon.co.uk/Homecraft-Pedal-Exerciser/dp/B001TX7R8K/ref=sr_1_2?ie=UTF8&s=kitchen&qid=1268732380&sr=8-2)

[elephant]

I like the looks of the Pedal Exerciser, I should get on too!

[Sangye]

Yup! That's the same one I have. We could be pedal buddies. World peace has to start somewhere.

[Jack]

Pedal for peace man! 291


292

[moyan]

Joining the pedal peace force!
Wish you, and all, the best, Sangye.

[jola57]

Love it Jack, where did you find the cycle icon? I have a bike too but can't use it. After 1 minute my muscles are so sore I suffer for two days. Swimming is for me.

[Jack]

Err......

I stole it from another forum. :o

[jola57]

Ha ha, good for you, it was brilliant

[Luce]

Rituximab question - how long after having it before an improvement is seen in reducing ANCA numbers etc? It's been nearly a month since my second of two infusions spaced two weeks apart and I was told at my renal appt today the ANCA hasn't really dropped. ANCA has always been reliable for me and I was aksed if I felt better for having the Rituximab but I didn't feel bad before and have no symptoms of active wegs.
I didn't get to see one of the two consultants from the team that I have any confidence in, instead I saw a very baby faced doc who is new on the team and I doubt knows very much about the disease. It felt like he was interested but didn't want to make any decisions so I got sent away and told to have blood drawn next week and again two weeks later, before being seen in clinic in a month's time to assess whether the ANCA has dropped. I'm to ring if I start to feel bad in between.
When I asked what the next step was if it turns out the rituximab hasn't worked he seemed vague and said it could be repeated, I could go back on Cellcept (which didn't hold back the last flare and is the reason I'm on Rituximab) or I go back to cyclo for a bit.

Does this sound like a cop out to anyone else? Is it normal to be switched back to cyclo after ritux? Does ritux really take up to 2 months to work?

I really liked the guy, it's just a shame I feel like he was a rabbit caught in my headlights even though he didn't let on he was out of his depth. Maye I'm just being paranoid but if the rtx isn't working then the wegs isn't being controlled, and as it heads straight for my lungs and kidneys I'm worried I could have a flare and not know until a lot of damage is done.

Sangye, help put my mind at ease!!

[Jack]

Since you have no active Wegs symptoms I'd just be glad about that and not take too much notice of ANCA readings. I've always been ANCA +ve even when in remission.

[JanW]

I was told by my doc that he wouldn't look at ANCA numbers to monitor disease activities (in fact, what came back from the lab was just pos/neg).

[Sangye]

Luce, I don't know if it's possible for ANCA to stop being reliable for someone if it's been reliable before. I do know it takes at least 6 weeks for rtx to kick in, so you're still a couple weeks away from knowing anything. It works even better after those first 6 weeks.

I think the doc you saw doesn't know enough but also no one might feel comfortable answering "What's next if rtx doesn't work?" right now. It's a wait and see thing.

Don't let your fears get the best of you. Be vigilant of your symptoms and non-specific indicators like increasing fatigue to cue you that Wegs is flaring. I bet if you looked back you would see that there were indeed some clues but you probably chalked them up to work, etc....

[Sangye]

Sangye feels like death warmed over. Just thought it was good to pass that along. :)

[Jack]

And I was about to PM you. :)

Hope you get over it a bit quicker this time, but if not I just hope it works.

[Sangye]

I was in really bad shape when I arrived-- no sleep last night on top of everything else. Contemplating why this round is so much worse, I wonder if it's because we repeated it after 5 months instead of 6. I see my Wegs doc Mar 31 and will have lots of questions about this. I can't believe I have to do this again next week. :(

[Luce]

Thank you Sangye, fears allayed and I will be a bit more patient. I'm still really anaemic so have been blaming fatigue and weakness on that, I have my iron infusion on Sunday so if that isn't a miracle cure then I know it's the wegs. I thought that as my ANCA has been reliable it would be odd for it to suddenly not represent the disease actiity accurately.

I'm so sorry to hear how rough you're feeling, the rtx agreed quite well with me with the exception of a scratchy throat for about half an hour during the first infusion. Chin up girl!

[JanW]

I'm with Jack, Sangye...at least if you are feeling no better right now, I hope this drug works for you.

[elephant]

Sangye glad your back in one piece. Today would not be a good day for the pedal pusher. Sleep good tonight!

[pberggren1]

Death warmed over? Sangye I cant imagine even what death feels like let alone being microwaved!

[DEE]

glad another one over hope your taking own advice and resting talk to u soon DEEx

[onatreetop]

Sangye,hope you are feeling better. The weather is going to be very Spring like. I hope you can open windows today or get ouside. I am waiting for the daffadils to start opening, maybe today. Take it as it comes and do what you can. Rest is under rated. Thank goodness for movies! That is the only time I make myself sit.

[renidrag]

hope you are better today

[Sangye]

Thanks guys. I feel better today but this is what happens each time. Day of the infusion is horrific, day after much better, then it's horrific again. It might have to do with the crash from the big hit of pred. I don't know.

I'm just enjoying the fact that right this minute I'm okay as long as I don't do anything.

[Sangye]

Even though I was wiped out yesterday I still did some leg and arm pedaling. It's really loosening me up all over. That's been a major problem all this time. I was very flexible before Wegs--did a lot of yoga-- and my body has stiffened terribly as a result of inactivity, inability to stretch and being full of chemicals and inflammation.

Also, after just 2 days of pedaling I can tell my legs are stronger, because it's easier to get up from a chair. I encourage everyone to get one of these pedalers. Even if you're strong enough to exercise, you can benefit from staying in motion while you're on the computer or watching tv.

[moyan]

Hi Sangye, thank you for sharing. Sounds like a perfect tool for a reclinerpotatoe!!

[Jack]

Sounds like the ideal solution to me, I think I'll ignore my wife's advice. ;)

I find that after sitting for a while and when I get up in the morning I can barely walk, but this improves after moving around for a while.

[Sangye]

It really is. I wish I'd known about it sooner! Definitely ignore your wife's advice on this one, Jack. That's one of the few times you'll hear me say such a thing. :D

[Jack]

It will have to wait until next pay day now - my daughter's birthday has cost me hundreds this month!

[pberggren1]

Boy oh boy, this sounds tempting!

I think I will look into one of these pedaling machines or a stationary bike. Can the tension on your pedal device be adjusted Sangye? I would like to start walking again now that all the snow and ice are gone. I have gained about 8 pounds in the last 3 or so months. This is most likely do to not eating as healthy as I should be. I am going to try and cut back on the red meats and potato chips and cookies and pastries and pies and you get the picture.

[Sangye]

LOL-- I get the picture. :D

It has a tension adjuster. I can't handle increased resistance yet, so I took it off for now. The reason I like this so much is that you can keep doing your ordinary stuff and still get some movement in. I never liked to sit around before I got sick.

[Jack]

From the reviews I've read, you can add tension, but if you try to pedal hard it is too light and unstable. It really is meant for maintaining movement rather than for a workout. I think you need a sit-on bike for that.

[Sangye]

You just need to stabilize the front of it so it doesn't slide. I've got it pushed against my computer desk bottom. I tried pedaling really fast (for a moment) and it stayed stable. But yeah, it's not meant to be a replacement for a real workout unless you're in sorry shape like some of us. :D

[Sangye]

Heading out for the LAST rtx infusion today. I'll be really glad when this round is over.

Elephant-- I'm taking a few hours off for this, so make sure to subtract it from my paycheck. :)

[DEE]

good luck Sangye wish you were taking a few hours off for something more plesant
take care of you DEEx

[elephant]

Good luck Sangye...gave you a raise today...:)

[elephant]

Sangye you will find this funny...the other day I called my Dog Sangye...my kids said,"What!" I guess I was thinking about you. :)

[JanW]

Good luck, Sangye!

[Brooke]

Good luck!

[pberggren1]

As far as I am concerned you deserve a big fat bonus of at least 4 figures Sangye!

We all need to be nagged and we must pay our naggers well.

[Lola]

You are being awfully quiet tonight, Sangye and you've got me worried! Usually you're up for a post or 7 or 8 on Tuesdays. I hope all went well today. Know that I'm thinking of you and praying for you.

I have actually turned a corner and am feeling quite well. Much more strength than before. I hope that's a sign for you to cling to.

[Sangye]

Just saw this and don't want you to worry... I'm just in sorry shape after today's treatment. BP started low (90/60 and below) and stayed low even with big hit of IV pred. Only thing that feels good is knowing this was the last one for awhile.

Happy to hear you're feeling much better, Lola. Keep that up~ :)

[elephant]

Hope today is better. Having a low blood pressure makes you feel sick....like you have low hemoglobin and fatigue and blahhhhh.....BOO! Did I raise your blood pressure yet? :)

[Sangye]

LOL-- that did the trick! Note enough scary nurses in the infusion clinic, I guess.

I wonder how low it's going when I'm up and moving. I feel like there's no blood in my legs or arms when I'm walking. I have no idea why it would be dropping so low. I'm usually a solid 110/70, sometimes up to 120/80. I've also had to be taking Lasix every day and get 2-3 lbs of fluid off within a couple hours. I'm staying well-hyrdated, getting salt and replenishing potassium, so I know it can't be the cause of the low bp. It's better to have low bp than high, but too low means too little energy and poor overall function.

[elephant]

It must be the medicine RTX. Sangye how long are you off the RTX? Do you go back on it again or this depends on how you are feeling? Are you still on Prednisone? All these questions will raise your blood pressure, i have more if you need me to ask more questions. :)

[Sangye]

LOL-- you're so funny. I see my Wegs doc next Wednesday and will find out what the plans are. I suspect they are the same as last time-- we're going to wait and see, and if things look good I'll go back on Cellcept at 3,000 mg and only use rtx again if needed.

I'm still on 4mg pred, and will find out how soon I can attempt a taper again. I suspect he'll want me to wait a month or more since rtx doesn't kick in for 6 weeks. (I assume that's 6 wks from the first infusion, not from the last--gonna check on that, too)

I'm really glad to have rtx, but given how hard the treatments hit me I hope I never need it again. I can't imagine losing 4-6 weeks of my life every few months. But I'm not letting my mind go there, since I have no idea whatsoever what the future holds for me.

[Lightwarrior]

But I'm not letting my mind go there, since I have no idea whatsoever what the future holds for me.

Rest easy, you have trained us well on the fine art of nagging. You will get through this and we will make you proud. I'm sending light and energy.

[elephant]

I am hoping for the diarrhea Cellcept! I am looking forward to your appointment Wednesday too. Sleep well and see you at work in the am. :) :)

[Sangye]

Rest easy, you have trained us well on the fine art of nagging. You will get through this and we will make you proud. I'm sending light and energy.
Thank you! You were pre-trained. :D

[Sangye]

I am hoping for the diarrhea Cellcept! I am looking forward to your appointment Wednesday too. Sleep well and see you at work in the am. :) :)
LOL-- As nostalgic as I am about cellcept diarrhea, there's always a chance of drug-free remission. I'm not hanging my hat on anything right now. I don't even wear a hat.

Hoping to clock in tomorrow and be ready for work, ma'am. :D

[pberggren1]

You can come in late if you want Sangye!

I hope the 3000mg of Cellcept works for you! It seems to have worked for me - though that is still being debated. And hopefully no more RTX!

[DEE]

only do part time or flexy hours aslong as we knew your ok DEEx ;-

[Sangye]

Let's not jump the gun.... Even I go back on Cellcept, it's several months away. Right now I'm just trying to recover from this month's treatments and see if I can get my legs to stop shaking!

I might need a modified schedule today. Got that "2nd day after rtx Feeling Lousy" thing going.... Bleh.

[pberggren1]

I hope the 3rd day is much better. We need you around for a long time to come.

[elephant]

Sangye, you can go home early today. Hope you feel better tomorrow. Your company will be missed.

[Sangye]

Well, I could just kick myself.... Last night I forgot to take the drug that keeps my intracranial pressure down. Not a big deal to miss one dose, except that the huge hit of pred on Tuesday raises the pressure. Still, it wouldn't have been so bad. It was missing the next dose this morning that caused trouble. I totally forgot. All day I couldn't figure out why my eyeballs were hurting and my head felt funny and achy. DUH! Epic fail. I'm hoping it kicks in soon and definitely will NOT forget tonight's dose.

I almost never forget to take my meds. What can I say. I'm worn to the nub.

[Lightwarrior]

I almost never forget to take my meds. What can I say. I'm worn to the nub.

Words of advice just today from a wise one (oh that was you) Don't be so hard on yourself, you remember now.

[Jack]

It happens Sangye. If you remember, I forgot my Ped a few days ago and felt bad. It took all day for me to work out what was going wrong.
Hope you feel better soon.

[elephant]

I have done that a couple of times! Especially when I forget the Beta blocker!

[pberggren1]

That reminds me.......

[Brooke]

Sangye~ What medication were you on before you started the rtx?

[Sangye]

When I was first diagnosed, I was put on ctx (oral, 150mg/day) for about 8 months. I transitioned onto mtx for 2 months but quickly developed pneumonitis (lung infilitrates) and had to stop it. I went several months with nothing and then went on Cellcept 2,000mg for 2 yrs. When my lungs started hemorrhaging again. I went back on ctx (oral, 150mg) for 3.5 months. Though the dose was too low for my body weight, it was destroying my bone marrow faster than I could make it and not controlling the Wegs. I did a round of rtx infusions (1/wk for 4 wks) in October and repeated it this month.

Pred-wise, I began with IV "pulse" steroids (1,000mg solumedrol for 3 days), tapering off them within 7 months. I was completely off pred for 2.5 yrs. I went back on it (4mg) last summer because of the current flare and haven't been able to taper since. My body is extremely sensitive to pred, with each 1mg acting like 10mg. So this measly 4mg is like 40 and is bad news for me.

The reason I was not on any meds for several months in 2007 was because my local rheumy was so awful I fired him and I didn't have access to anyone else. I had no idea about active Wegs vs remission and thought I was done with treatment. In retrospect it's clear that I was definitely not in remission, but the Wegs was not active enough to cause my lungs to hemorrhage, either. I was in terrible shape--quite weak and sick. If I'd been properly treated initially (with a pred taper based on Wegs activity, not on a textbook protocol) I believe I would have gone into remission within the first year. I began treatment in mid-2006.

[Brooke]

Thanks Sangye. Do you know if most people need another round of the rtx? The way my doctor made it sound, was I would only need the one months treatment and that should hopefully help. She said of course if that didn't help - we could try another round 6-9 months after. How did you feel from November until now? Did you have another flare or why did you have to do another round?
Were you put on Rtx because the ctx was not working for you?
Sorry so many questions!! I will probably have a lot now that I will most likely be starting rxt soon.

[moyan]

Hi,I am beginning to doubt I will ever go into remission. Like you they started me on 200 mg procytox, but within a couple of months I needed 3 bloodtransfusions so down went the dosis to 150 mg. I wonder if I would have felt better today if he had known enuff to switch to another chemo, but
if I start seriously wondering, I would be deeply depressed so I spend my thinking on other things than tripping on plushmice in the night that I can blame on pred. :)
You sure got the worst of it Sangye, and still encourage us others, a true samaritan!

[moyan]

PS mistake, down to 50 mg

[Sangye]

I don't know any statistics on the average number of rounds needed to induce remission or maintain it. I know Weggies who had 1 round and never needed anything else, and I know Weggies who do well only if they get more rtx every few months. And everything in between!

There are also two protocols: 1/week for 4 weeks (total 4 infusions) or 1/ every other week (total 2 infusions), depending on Wegs activity.

When we did the first round last October I asked my doc what the plan was. He said "We'll see." There's no way of knowing with rtx. This is actually a good thing-- it works so well that they don't want to automatically commit to more rounds if you don't need it.

I've never been in remission, but you could say that last year I had a flare of active disease. My lungs hemorrhaged, which is considered a severe flare. The rtx stopped that and some symptoms have been better. We repeated it this month because I still have symptoms of active disease. Tapering pred by 1/2 mg caused them to fire up within a week. A good analogy is that we got the raging forest fire mostly contained, but now we have to extinguish it.

[Sangye]

Moyan, you've been through plenty. It sounds like you had the same problem as me-- the ctx was destroying your bone marrow. I know once you get talking to a Wegs doc you're going to get better.

[Doug]

Jan, it's been a huge deal for me to enter Medical World. I didn't live there before. Even though the holistic docs who know me support the medical treatment, it's quite painful for all of us. I'm not able to restore/rebuild my body like I could with any other disease.

Anytime I meet someone new in holistic circles, I have to explain it all over again. I can hear the judgment in their voices, like I'm doing something stupid by taking chemo, etc.... Those who don't judge still have a sense of disappointment and frustration. They fight it. So did I. I can't fault them for it. The drugs we take are horrific, even if they seem routine to us.

The medical docs don't understand me as a holistic physician. My holistic peers don't understand me as a medical patient. It's incredibly isolating and brings me to tears quite often.

When my well-meaning friend (the vitamin peddler) pushed holistic treatments for WG, I reminded her that I could take her vitamin therapy and die or the Toxic Duo (a proven therapy) and live. She decided she didn't want to have my death on her hands. I can be a genuine xxxxxxx on this matter. We all need to be.

[Doug]

Well, I could just kick myself.... Last night I forgot to take the drug that keeps my intracranial pressure down. Not a big deal to miss one dose, except that the huge hit of pred on Tuesday raises the pressure. Still, it wouldn't have been so bad. It was missing the next dose this morning that caused trouble. I totally forgot. All day I couldn't figure out why my eyeballs were hurting and my head felt funny and achy. DUH! Epic fail. I'm hoping it kicks in soon and definitely will NOT forget tonight's dose.

I almost never forget to take my meds. What can I say. I'm worn to the nub.

Forgotten doses:

I'm terrible about taking my Garbapentin. One dose a day doesn't wipe me out, but two in a row come back in the form of incredible burning, stabbing pain in my face (this is the Herpes zoster disaster consequences, subset of the WG disaster consequences). And a burning itch. This is straight reportage: I am describing what's going on this very moment, 21:53 MDT, whatever day this is...!

Pills taken.

The message I think we need to emphasize again is that you need to question your doctor about each new prescription. What happens if you miss one, two doses? Do you play catch up, or do you deal with starting up from point zero again?

[Lola]

The message I think we need to emphasize again is that you need to question your doctor about each new prescription. What happens if you miss one, two doses? Do you play catch up, or do you deal with starting up from point zero again?

Excellent point, Doug. I never thought to do this!

[Sangye]

Just got back from seeing my Wegs doc. He said the extreme exhaustion and weakness I'm feeling is not universal for those getting rtx, but he can't tell if it's due to the rtx or the big hits of pred each week. (I can't either. I suspect it's the pred, though. This is exactly how I felt on high-dose pred in the past. It also makes sense that this round of rtx was harder on me because I've been on pred all these months.) He said whichever it is should ease up in a few weeks.

He also gave me the go-ahead to start tapering pred. That should help a lot. I'll start by cutting 1/2mg (ie, from 4mg to 3.5mg) or even by 1/4mg since I'm so sensitive to it. I can't tell you what a relief it is to have a doc who understands this and doesn't just recite the ridiculous "Anything under 5mg is no big deal." I told him my goal is to be off pred completely by summer and he felt that was reasonable and doable. I'm not to taper faster than 1mg per month, but I can go as slowly as I want.

We talked about how I've developed nasal symptoms (not sinuses) and how they fired up when I attempted a pred taper in January. He said it's not unusual to have developed them. If they fire up as I taper pred but other Wegs symptoms stay controlled, he won't worry about it. I may just have to live with it.

We didn't discuss what to do next, in terms of Cellcept, etc.. since we're just going to wait and see what happens. He thinks I won't need rtx again until next year. That would be great. He isn't fond of the alternate protocol used with rtx (ie, 2 infusions in one month), at least for my case.

I'm looking forward to a stretch with less and less pred and with no big hits of other drugs. Hoping I can finally get strong again.

I told him I'm a major nag in our group about seeing Wegs specialists. He was quite happy about that and said it was absolutely necessary that we each have Wegs docs coordinating our care. So there. FROM THE HORSE'S MOUTH. :D

[elephant]

From the horse's mouth to the nagger mouth! Hee! Hee!
I am erasing that chalk off your floor. You are going to be better so very very very very very soon!

[DEE]

good news sangye here to you getting stronger soon but dont stop nagging us !!!!!
take care DEEx

[jola57]

I hope the rtx does help and you are well into getting better Sangye. Tapering from pred is a major head ache. I have been alternating between 7 and 8mg for the past month and everytime I go less I begin to ache all over.

[pberggren1]

That is good to hear that Dr. Seo said that it is absolutely necessary that we each have Wegs docs.

What's this talk about chalk Elephant?

If I am able to taper the pred in a few months time, say June or July or August, I will taper no more than 1mg per month and closely monitor symptoms and then when I get to 5mg I will go by not more than 1/2mg per month. I am on 10mg right now and am thinking it may not be enough but will give it some more time. I see the GP on April 6 and the ENT on April 15 and the Rheumy and Pulmo on June 2.

[elephant]

Phil, it was something Sangye posted...A cat laying on the floor ( crime scene) chalk drawn around the cat. Pretty funny....Sangye can find the funny ones.

[pberggren1]

Oh ya! I remember now!!!

[Sangye]

I thought of some more things Dr Seo said yesterday. (I don't know why this program underlines his name every time).

1) Studies of other drugs that are as powerful as ctx and rtx have not panned out. We won't have any other options in the foreseeable future. Basically, we have to make ctx or rtx work. We didn't discuss the less powerful drugs used in milder cases or to maintain remission (imuran, mtx, Cellcept). I think there might be research in the works for alternatives to them, but even if there isn't we still have those 3 choices.

2) I asked if rtx stays circulating in the blood for months or if it stays bound to the receptors on B cells. Neither! He said it goes in, binds to B cells, destroys them and then is removed by normal processes (pee, poop, sweat). I finished the last infusion a week ago and he said any rtx in me was "long gone."

This might not matter to most of you, but it helps me tremendously. There is at least one Ayurvedic herbal remedy that helps cleanse the blood of toxins and "fire" excess. It really helped me in the past way back when I was on CC. I think it was one reason why I didn't flare sooner. Anyway, I didn't take it once I began ctx last July-- not safe-- and I was afraid to take it since starting rtx last October. (I didn't know if it would flush the rtx out of me.) I hesitate to bring this up because I know some of you are going to ask what it is and how much to take, etc.... I know a bit about Ayurveda, but I would never have taken this without seeing a highly-skilled Ayurvedic practitioner who advised me. She also made sure the other drugs I was on were okay with it. If it interests you, find an Ayurvedic practitioner in your area (or travel to one--they can help tremendously) and we can talk about it.

If you want more info on what to look for in such a practitioner, let me know. Maybe I'll start a thread on how to what to look for in different types of holistic providers.

3) I asked him to please-- for the love of all that is good in the world-- update the JHU Vasculitis Center website. He said they want to but don't have the funding to pay someone to do it. *sigh* It's upsetting that, due to the rarity of vasculitides, we can't even get enough money to disseminate current info at a major center!

[pberggren1]

Thanks for the info about ctx and rtx.

I would be very interested in this herbal remedy and Ayurvedic practitioners.

REALLY - how much would it really cost to update the site?

[JanW]

Sangye - do you have any sense of what percentage of WG cases are resistant/become resistant to treatment? I have assumed that the vast majority of 'serious' cases can be treated either with ctx or rtx.

[pberggren1]

I forgot to ask:

Are we not to pretty much stay away from herbal remedies and holistic practitioners?

[Sangye]

I forgot to tell you guys what happened as I was leaving for my two JHU appointments yesterday.

I had 2 appts-- one with my therapist at 11:00 and the other with Dr Seo at 2:00. I knew this. If you asked me what time my appts were I would have told you the correct times. But somehow I had it in my head that I had to LEAVE at 11:00. All morning I mentally reviewed the time I'd have to be in the shower by, feed the dogs by, etc... to be able to leave by 11:00. I also mentally reviewed the appt schedule-- first one at 11:00, next at 2:00. (I have to do all this mental reviewing because I'm so worn out and mentally foggy)

The thing is, those two trains of thought NEVER crossed.

So at 11:00 I looked at my clock and was ready to walk out the door. I reviewed again-- first appt at....11:00!!!! It hit me like a brick. I burst into tears (never far from those lately) and called my therapist. There he was, wondering why I was sitting across from him-- 1.5 hrs away! Seeing how much I needed that appt with him, he rearranged his schedule to see me at 1:00. Thank goodness. I was a mess.

I've never done anything like that-- not even when I was so much weaker. It really is proof to me of how utterly exhausted (mentally and physically) I am. Today is going to be one of those "Sleep for many hours in the middle of the day" days. Every so often I have to do that to restore a bit.

[pberggren1]

Oh Sangye!!

Don't be too hard on yourself. I'm glad that you were still able to see him the same day. I hope you are not too stressed out.

I noticed too that it underlines SEO'S name.

[Sangye]

Sangye - do you have any sense of what percentage of WG cases are resistant/become resistant to treatment? I have assumed that the vast majority of 'serious' cases can be treated either with ctx or rtx.
Jan, I don't know any statistics on it. I do know that a fair amount of people can't take ctx because:
1) they don't tolerate it (suppresses bone marrow)
2) it doesn't work to control the Wegs
3) they've reached their lifetime limit
4) they have kidney or bladder issues that make it unsafe

Up til now, if someone couldn't take ctx they were up a creek.

Rtx works particularly well for refractory (unresponsive) Wegs. There's always the chance of developing an allergy to it that can't be controlled by high-dose pred or benadryl given during the infusion. Dr Seo has only one Weggie who can't take ctx again and has become allergic to rtx. I don't know what they're doing for him. I don't think there's much anyone can do. Dr Seo emphaisized that he has a few HUNDRED patients on rtx and this has only happened to one.

[Sangye]

I forgot to ask:

Are we not to pretty much stay away from herbal remedies and holistic practitioners?
It's not safe to take any herbal remedies without a holistic physician or skilled Ayurvedic practitioner (some are physicians, some aren't) guiding you.

Nothing wrong with either (herbs or holistic) as long as they don't try to treat Wegs or substitute holistic for drugs. I've commented on this several times-- search for holistic and you'll find it.

[pberggren1]

Thanks again Sangye for the info on ctx and rtx and the info on Ayervedic practitioners.

[Jack]

he rearranged his schedule to see me at 1:00. Thank goodness. I was a mess.

I've never done anything like that-- not even when I was so much weaker.

I had a strange thing happen a few weeks ago. I had rearranged a couple of appointments due to the very bad weather we had been having. As luck would have it, I got new appointments made for the same day within an hour of each other. Ideal! However, I did not get any confirmation letters and when I turned up, the clinics were closed and they had no record of me.

What the hell went on there I just don't know. Perhaps I made it all up?

[Sangye]

LOL-- well, they said the Chilean earthquake tilted the earth on its axis. Maybe it rolled our brains around some? :D

[pberggren1]

That is very strange Jack.

The only doc that I get confirmation letters from is my Rheumy. The others just phone or I phone to make the appointment. I doubt you made it all up.

[Sangye]

Oh, forgot something else from yesterday. (Man, what an action-packed day it was)

As I was driving to JHU I was listening to a talk show on NPR. One of our senators was on and they were taking calls. I stopped crying long enough to call in, and they let me ask my question on the air. I listened to it last night, and it's not at all apparent (even to me) that I had been crying for several hours, was driving 65 mph on a busy freeway and was utterly exhausted. No wonder people can't tell how sick I am, or think I'm exaggerating it. I don't mean to brag, but I'm a lot tougher than I give myself credit for.

Here's the link if you want to hear it. (My birth name is Christie) http://thekojonnamdishow.org/audio-player?nid=16449

[Jack]

Admit it Sangye, you're just making all this Wegener's stuff up! ;)

(By the way, you would get prosecuted for using a cell phone while driving in the UK)

[Sangye]

LOL-- it's illegal to use them while driving in California, too. I don't text or do anything fancy. I rarely even use it while driving. *head hanging down in shame*

[Sangye]

And another fun part of my appt yesterday was that in addition to the usual blood draw, my doc checked on a bunch of other things. How that phlebotomist managed to get a whopping 14 vials of blood out of me I'll never know. The big hits of pred all month made my usual stinky veins even worse.

[elephant]

Sangye thanks for the information. I also learned that my Rheumatologist wants me off prednisone but slowly. She thinks I was flaring, that is when I increased my prednisone to 10 and told her. She thinks prednisone is not safe at any dose long term. So I start tomorrow taking 9mg of prednisone and she wants me on it for 6 weeks, then down to 8 mg for six weeks....once I start a flare I guess They will increase the Cellcept to 2500mg a day. Hoping I can get down to 5 mg without symptoms.

[Sangye]

Elephant, you probably already know this, but when you start the taper, you can ease your body into it by alternating doses (9mg day one, 10mg day two, 9mg day three....) for a week or two (or longer if necessary). I know you know this. Maybe others who don't will hear it for the first time, though!

Cellcept takes 4 wks to kick in. So if you're on 1,000 mg/day and you increase it to 2,500mg, that new dose won't be active for a month. And it will take a few more weeks to really get to work. That's why my current flare couldn't be treated by increasing the Cellcept. By the time we did, it was too late. So be extra vigilant for the earliest signs of a flare and increase it then.

I know you're gonna get down to 5mg just fine. I'm glad your doc is taking it slowly.

[Lightwarrior]

Here's the link if you want to hear it. (My birth name is Christie) Audio Player | The Kojo Nnamdi Show (http://thekojonnamdishow.org/audio-player?nid=16449)

My name is Christi

[Sangye]

LOL-- but you totally spell it wrong....