Cellcept vs. Imuran

[Chris G]

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]

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

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]

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]

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"

[pberggren1]

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]

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]

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]

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]

LOL ... at the pharmacy.

[tomntexas]

Has anyone been prescribed MyFortic rather than cellcept?