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Jules
04-13-2011, 01:35 AM
Hi everyone - I'm rapidly approaching the 3 month mark of taking ctx and my consultants have started making noises about a drug change. However, one is recommending Cellcept the other Imuran. Are there any major advantages/disadvantages of one over the other? Little confused as to which way to go - also, do you get to kick the Pred when you change to one of these . . . please tell me that's the case, some sleep would be lovely!!!!:sleep:

Sangye
04-13-2011, 02:12 AM
I don't think one is more advantageous than the other. Like all the meds it comes down to which one you tolerate best. Your docs should give you a thorough breakdown of the efficacy and risks for each one before deciding.

As far as pred goes, you'll probably have to stay on it while you transition and then taper once you stabilize. It's not good to change two variables at once. How much pred are you on now?

Jules
04-13-2011, 02:21 AM
Just been reduced to 15mg . . . from looking at other threads, it looks like it can all go a bit pear-shaped from 10mg down - not looking forward to the change and possible side effects, as have managed to go back to work full time and am feeling ok on the ctx/pred + others mix!

Sangye
04-13-2011, 03:05 AM
Don't extrapolate too much from others' experiences. Many people transition smoothly and taper off pred completely.

A lot of people get in trouble because their docs transition them onto milder drugs too soon (ie before remission has been induced) or their docs taper the pred too quickly after transitioning. (My original lousy doc did both of those at once!) Many people get stuck in a cycle where their doc starts using pred to knock down the Wegs activity instead of the proper immunosuppressant.

You're doing well right now, so there's no reason to think you will have problems as you transition.

LisaMarie
04-13-2011, 04:31 AM
:crying:I hate both...both caused my liver enzymes to triple and made me sicker....so from my experience if you can avoid it do it...I here if you do rituxan you may be able to just stay on low dose pred to keep it at bay??? who knows...but i am willig to try it if it is truly low doses...i am currently on 10 mg of pred and holding my own as best as i can...but i do feel better joint wise......just my 2 cents:rolleyes1:

LilyPony
04-13-2011, 06:26 AM
Many people get stuck in a cycle where their doc starts using pred to knock down the Wegs activity instead of the proper immunosuppressant.

Can you explain what this means... for a person who has yet to get proper treatment... Not doubting you, just very curious. The rheum I've seen so far have wanted me on pred plus bactrim. The one wanted me on pred I guess indefinitely until I was better, then taper. The other wanted me to taper the pred right then and see what happened (NOT good). Then I ran out of bactrim about a week ago, got busy and didn't refill it right away. I was thinking it wasn't particularly crucial but symptoms started sneaking up on my very quickly and wasn't until last night that it dawned on me I never picked it up (got it now). So I'd been thinking the pred was really doing something but seems more like pred/bactrim just put the wegs on hold until I messed it up. It really got me feeling like there was no way I'd ever get into a proper remission with the current plan ... then see your comment and kind of confirmed that thought.

delorisdoe
04-13-2011, 09:50 AM
Interesting theory with the bactrim considering its actual role in wg. Bactrim s the only prescrption I have had for the last few years. Sometimes pred for mini flares. I always believed that the only thing bactrim does is prevent lung infections

elsawind
04-13-2011, 03:32 PM
My husband was on Cellcept and after three months induced a bone marrow failure, so it was suspended. But of course, everybody reacts differently. No experience with Imuran.

DEE
04-13-2011, 07:05 PM
Ive used both Cellcept gave me continual d and s and stomach cramps. Changed to Imuran and have had no problems since day one.
So I think it is very much an individual thing

JanW
04-13-2011, 11:39 PM
Not to speak for Sangye, but what I see a lot around here is people on pretty significant doses of pred for many months if not years, when current recommendations suggest tapering within several months of dx (with the goal of tapering completely). This may be because they are not being treated with the right immuno, or the right dosage. Although I have moderate WG, with significant windpipe damage, the progression of my disease was not swift and my doc was willing to work with only the immunosuppressant for me (mtx) which actually worked (and which I am trying to transition off now). I've only been on pred once (as an experiment to see if we should increase the mtx; it worked to relieve joint pain and I did increase the mtx, which also worked). Although standard of care is that WGs start on both the pred and the immuno, many docs don't work quickly enough to reduce pred, seemed to be what the researchers at the symposium was saying. They also underplay pred symptoms and silent damage.

Chris G
04-14-2011, 12:34 AM
Lily - I see Sangye hasn't replied yet, so I'll jump in here with my 2 cents. While pred will give us instant relief from wegs symptoms, it does not control the disease - it more or less just masks it. Proper treatment of the disease must involve an immunosupressant control drug of some kind (which one depends upon the course and aggressiveness of your disease). The immunosupressants take time to load into our bodies - some take a few weeks, some take months. Prednisone is used at higher doses to offer relief and prevent further damage, while the control drugs kick in. Pred will be lowered slightly, so the docs can tell if the control drug is working. In a perfect world, after the control drug is working, pred can be tapered to much lower doses, if not completely. That's a perfect world - one in which I do not live. There's a lot of trial and error to find the right control drug/dosage for each person, and more trial and error when lowering the pred.

If you feel that your doctors are treating your disease with prednisone, then you would be correct in thinking you won't achieve remission this way. If your wegs is considered very mild, it woulnd't be unheard of that Bactrim would be used as the control drug - however, I think Bactrim is used as a control drug only AFTER remission has been achieved. Someone will come along and correct me if I'm wrong on this.

Although I'm no expert, I am concerned that your treatment is not what it should be. As the elders here will tell you, the best thing for you to do would be to see a wegs specialist at a vasculitis center.

Sangye
04-14-2011, 02:18 AM
:crying:I hate both...both caused my liver enzymes to triple and made me sicker....so from my experience if you can avoid it do it...I here if you do rituxan you may be able to just stay on low dose pred to keep it at bay??? who knows...but i am willig to try it if it is truly low doses...i am currently on 10 mg of pred and holding my own as best as i can...but i do feel better joint wise......just my 2 cents:rolleyes1:
LisaMarie, it is not a typical side effect of Cellcept to cause liver problems. Your case was very unusual-- the only one I've heard of so far. Cellcept and imuran are much milder and less riskier than rtx.

Some people who use rtx can go off pred completely and others need to stay on it. Like all of our drugs, it's very individual.

Sangye
04-14-2011, 02:25 AM
Bactrim is helpful in some people to keep Wegs under control. It's not powerful enough to stop a severe or moderate flare, but once remission has been induced it does seem to help some people stay there. It isn't universal-- it did nothing for me.

Lily, what I meant by docs increasing pred was that instead of manipulating the main immunosuppressant (eg ctx, rtx, mtx, imuran, cellcept), they just increase and decrease pred to control symptoms. They don't realize they're doing almost nothing to control the actual disease. This happens with inexperienced docs.

Pred is anti-inflammatory and immunosuppressive, so it does have some effect on Wegs activity--especially at high doses. But it doesn't suppress immunity nearly as well as the main drugs so it can't induce remission. Also, you'd need to stay on high dose of pred indefinitely just to keep the lid on the Wegs. Not an option.

RCOSSIO
04-14-2011, 06:54 AM
In my case...I have been on Cellcept for almost 2 years. About six-eight months ago my doc reduce my cellcept from 3000 to 2000mg daily. However, in Feb of this year I started with mild joint pains and quicly ordered lab work. The blood work was normal except for my ANCA...it went up slightly. March 2nd I increased my cellcept back to 3000mg daily and increased pred to 5mg daily. Just completed my bloodwork last week after being on Cellcept for a month and all my bloodwork came back normal as well as my ANCA.

One more thing doc mentioned it can take 6 weeks to 12 weeks for cellcept to work. I am guessing it has kick in. I do have some minor joint pains but normal on the sed, creatine, ANCA and "BRAIN":w00t:

pberggren1
04-14-2011, 08:25 AM
That is good to hear Richard. I'm glad you noticed your symptoms right away and told your doc and upped the CC and pred.

LilyPony
04-14-2011, 10:26 AM
Although I'm no expert, I am concerned that your treatment is not what it should be. As the elders here will tell you, the best thing for you to do would be to see a wegs specialist at a vasculitis center.

thanks chris, well explained about the pred - any yes, I am waiting to get into the JHU vasculitis center. They've got all my records but have not been given an appointment yet. It was so delayed as I was being diagnosed with other things (all confirmed) that explained away the wegs and it wasn't until the last few months I'm developing more classic wegs symptoms that cannot be explained away. It's been a tough road because I"m ANCA negative and the biopsy wasn't conclusive for any particular variety of vasculitis, just really bad whatever it was. Now that there's significant sinus involvement there's no doubt in my mind.

And thanks Sangye too!

drz
04-14-2011, 12:11 PM
Interesting theory with the bactrim considering its actual role in wg. Bactrim s the only prescrption I have had for the last few years. Sometimes pred for mini flares. I always believed that the only thing bactrim does is prevent lung infections

I can't take Bactrim due to sulfa allergy so I can trimethoprim which is the non-sulfa part of Bactrim. It is often used to prevent urinary tract infections and I have not had another one (UTI) since starting the trimethoprim. Since it is an antibiotic, if might help somewhat in warding off other infections although it didn't prevent my bronchitis, ear infections, and sinus infections. My rheumatologist told me today most likely my recent flare of blood clots in nasal area was caused by the infections that preceded it in my ears and sinuses. Infections are often the precipitating factor in developing active Wegener's disease or having a flare up so taking a antibiotic might be preventing the infections that cause the flare. Also in my case once the infections were treated and cleared up, the Wegener's also subsided again.

delorisdoe
04-14-2011, 07:57 PM
I can't take Bactrim due to sulfa allergy so I can trimethoprim which is the non-sulfa part of Bactrim. It is often used to prevent urinary tract infections and I have not had another one (UTI) since starting the trimethoprim. Since it is an antibiotic, if might help somewhat in warding off other infections although it didn't prevent my bronchitis, ear infections, and sinus infections. My rheumatologist told me today most likely my recent flare of blood clots in nasal area was caused by the infections that preceded it in my ears and sinuses. Infections are often the precipitating factor in developing active Wegener's disease or having a flare up so taking a antibiotic might be preventing the infections that cause the flare. Also in my case once the infections were treated and cleared up, the Wegener's also subsided again.


yes that is how i have been lead to believe bactrim helps. it simply helps fight off infections that could trigger wg


for me it did not work. i had a nasty bout of pnuemonia in december. maybe it did not work because it was at the pharmacy and not in my possesion. I take it now.

leigh

Sangye
04-14-2011, 11:51 PM
LOL ... at the pharmacy. :lol::lol:

tomntexas
04-27-2011, 03:44 AM
Has anyone been prescribed MyFortic rather than cellcept?