WG in remission

[elephant]

They are trying to supress my immune system more . I always was on cyclosporine since 1989 (kidney) transplant. Then they started the cellcept in March 2009 and they want to keep me on cellcept and cyclosporine. Jack your only on cellcept and prednisone for the wegeners and kidney transplant?

[Doug]

Gad! I'm with Jack on that one, elephant. I always thought CellCept was the drug of choice once your WG was in reasonable control and you'd been on Cytoxan to a point where most doctors and the manufacturer recommended use be discontinued. Sort off a 'tough cop - easy cop" scenario, with Cytoxan the tough cop that kick WG butt until your immune system was sufficiently suppressed for you to start feeling much better if not over the flare. Is your doctor splitting the difference? I mean, were you put on a much lower level of Cytoxan at some point, with CellCept put in to even the load?

p.s. I just noticed elephant's reply. This is a much different situation that a typical WG flare, or perhaps where a flare did more damage before the diagnosis, so a stronger attack on the immune system was needed to deal with the double duty of a flare plus kidney replacement surgery. The Cellcept would be milder that the Cytoxan, so the combination, I'm guessing, would help elephat's immune system to come into control without absolutely poisoning the patient! Is that closer to what you understand, elephant?

[Jack]

Jack your only on cellcept and prednisone for the wegeners and kidney transplant?

Yes, cellcept 720mg/day and pred 10mg/day. I can't get lower than that without getting problems with eustation tubes and leg/foot pain, but still no Wegener's flares. Of course, I also take a lot of other junk for blood pressure, bone strength, stomach, lungs etc. etc.

(just had a count up and there are 14 different medications in my pill box although one or two are only used when required and that is with me trying to minimise the amount I take)

[Doug]

Good luck on the road to minimizing the number of pills you take! I'm down Bactrim for remission maintenance, Furosimide for swelling in my feet (I did have serious kidney involvement during the flare, and lost some function), and two pain pills related to postherpetetic neuralgia. I kind of look at that number of pills as a measure of how well I'm doing, Jack, and remind myself from time to time just how long the road to the "new normal" was: There were several blips along the way.

[elephant]

The Rheumy( local) talked long and hard with a bunch of rheumy one in Charleston and Carol Langford about what to do with me. I had a lung nodule really bad sinus, facial pain, joint pain....but no blood or severe shortness of breath. So they want to do a less invasive approach and do the cellcept 2000mg, cyclosporine 150mg and at the time Prednisone 60mg ( which I was on twice). So they are hoping this will work. They didn't want to cause damage to my kidneys and risk of cancer ...ect.. I am on so many other drugs Jack that the pilll bottles fall out of the cabinet. There would be more pills to take but I refused to take them. I can't afford another side effect. I might take them later, but right now enough is a enough.
Jack that is good to know that your on cellcept for both, mabey I can some day. Thanks Doug for the input.

[ticklytoes]

I am on 8mg of prednisone and 5 tabs of mtx weekly...i am considered in remissiion, but when i tried to taper to 7mg, my pr3 became positive again, of course, we were tapering 1mg every 2 weeks, and i see that minimum should be 1mg every month. if i have the same luck when tapering to 7mg again, does anyone have any suggestions about what to try next? should i switch from mtx to cellcept? what do u guys think? i havent had to be on cytoxan bc i have limited wg. but, i would like to see remission with lower doses of pred. Nicole

[ticklytoes]

btw, i am tapering slower now, 1mg every month...and i have a trach.

[elephant]

I learned from this forum to decrease the prednisone down 1 mg a month. I told my local Rheumy that's what I am doing and she was OK with that. So far so good, I am down to 6 mg and I think I will stay a 5 mg for a while and decide what to do and of course talk with both my Rheumatologists. Both my ENT and pulmonologist stated that I will get worse once I go below 5 mg of Prednisone, My concern is that I have glaucoma and forgot to mention it to my pulmonologist. He put me on what I thought was symbicort but got Advair diskus. I am not interested in using it. I will have to look into it more.

[coffeelover]

[QUOTE=ticklytoes;8702]I am on 8mg of prednisone and 5 tabs of mtx weekly...i am considered in remissiion,

I AM TRYING RO FIGURE OUT WHY YOU STILL HAVE THE TRACH IN IF YOU ARE CONSIDERED IN REMISSION? Something else needs to be done to help move you towards trach removal, unless there is permanent damage?
I too would love to get off the pred, but 7 mg sounds like heaven to me....I hope I can get there soon
Lisa

[ticklytoes]

lisa
my ent wants me to be on the lowest dose of pred. that i can be on before he does the surgery to remove the "webbing" in my airway...i achieved "remission" in july and so e started tapering 1mg every 2 weeks. once i got to 7mg, my pr3 became positive again, so she started a 10mg every other day...this made my pr3 go even higher, and i lost substantial hearing and had to go to the er for iv dosed steroids. my ent app at vandy was the very next day, and we were gonna talk about getting it out then, but since all that had just happened, he was hesitant to do anything in fear that i wasnt stable enough. i guess he just wants my airway to be as stable as possible bc he said he did surgery like mine to remove a pt. trach and it caused a flare in the airway and she lost her voice and had to be re-trached so, hes being very precautious about the remission stuff.