relapse meds

[RCOSSIO]

Sangye when you switched to Cellcept which my doc wants to do next month were you completely off the pred..or were you taking pred while the switch happened?

[Sangye]

I was on cytoxan and pred for about 8 months and had just transitioned to mtx, just getting off pred when I got severe pneumonia. Then I got it again. I had a terrible rheumy who had totally botched my care. I was seeing a pulmy who didn't specialize in Wegs, but felt I was okay to be off meds. I wasn't, but who knew? I was so weak and sick, and thought the whole thing was killing me (which it actually was).

As soon as the second pneumonia cleared up, I was hospitalized again with a severe GI problem brought on by the 13 rounds of antibiotics we had done in those 4 months. I developed elevated intracranial pressure and almost died. They couldn't put me back on pred with that.

I didn't get to Mayo Arizona and start Cellcept for another 2-3 months. The Mayo rheumy always wanted me to go back on pred, even though I was getting stronger all the time without it. So I've just been on Cellcept alone. I still have a lot of pain and symptoms that would probably be relieved with pred, but my JHU docs say I don't need it unless the Wegs starts firing up. It's keeping the Wegs nice and stable--not remission, just not flaring.

I don't know if I'm an exception being on Cellcept without pred. I guess everyone is different.

[Jack]

My consultant has specifically warned me against ever coming off pred. He told me, "At some time, someone is going to try to get you off these. Dont do it! In your case you will always need them."
As you say - we're all different, even though diagnosed with the same disease.

[Sangye]

Jack, that's true. Your case and mine are so different. I don't have kidney involvement, but have had a lot of other weirdo complications. Without them, I'd no doubt be in much better shape. At least right now!

Given how long you've been on the pred, it's not likely you could get totally off it, anyway. Not just for Wegs, but your adrenals in general. But you already know all that-- It stinks. It just totally, totally stinks.

[Jack]

It just totally, totally stinks.

Sounds like you need to work on that positive attitude!

(Even though what you say is true )

[Sangye]

LOL-- I've learned I can have a positive attitude and still acknowledge that something stinks. It's the difference between letting myself feel it vs. getting mired in it.

[Doug]

I was off Prednisone for two months before my primary care doctor (pulmonologist) got the word from the rheumatologist at University Hospital-Denver that I could move over to CellCept from Cytoxan. Of course, all my numbers were starting to stabilize by then (1-1/2 years after treatment started and six months after the rheumatologist had a chance for a one year follow-up in Denver, where I was proclaimed "miraculously well along to remission"- he did a cANCA, UA's, a one hour interview on all aspects of the course of the disease and treatment during the previous year, and was pleased with my progress. "I see no reason for you to return next year so long as you continue to show progress," he told me.) I think the main difference for me was that I never had any infections that forced me back into the hospital. Even with kidney involvement, my progress toward remission was pretty much straight foreward.

[RCOSSIO]

Ok..Thanks to all of you...in two weeks I am hoping to make the switch...Funny how I hated drugs and now hear me say "looking forward to the switch...anyway thanks Sangye...I will defnitely know if Cellcept will be the drug of choice!!!!

[Sangye]

Funny how I hated drugs and now hear me say "looking forward to the switch.

LOL, I know the feeling. I never even took aspirin before Wegs. When I first got blood clots and had huge swelling in my legs, they put me on Lasix-- a diuretic. I had a major fit about it.

A couple months ago, I had severe leg swelling again. My doc prescribed Lasix, which was fine with me. There was a problem getting the prescription, and by the time I got hold of the doc, the pharmacy was closed until Monday. For those 3 days I had to laugh at how much I'd changed-- now I was upset that I couldn't get the Lasix fast enough!

[coffeelover]

[quote=RCOSSIO;2171]Ok..Funny how I hated drugs and now hear me say "looking forward to the switch...

I have a similar experience. I have always been so afraid of drug and possible drug interaction. The other day I went to my GP and my quote to him was "I used to be afraid of coming to the doc becuase I was afraid of being given more drugs, but give me whatever I need, I don't care anymore!" I have been thinking about that statement alot since I was at the doc last Wed. and find it almost "crazy". How I was so afraid not long ago and now I accept it with no fear at all! HMMMMMM Maybe it's the drugs that make me that way