New Research on Cellcept and Long Term Immunosuppression

[JanW]

I wanted to post a couple of items verbatim from the latest VF newsletter. This is all from an article by noted researcher (now at Cleveland Clinic) Dr. Gary Hoffman. He was talking about what we have learned about WG just in the last couple of years:

1. A recent trial by EUVAS (European Vasculitis Study Group), attempted to provide data that allow doctors to select yet another option for maintaining remission (other than imuran or methotrexate). EUVAS doctors asked should a doctor consider Cellcept for WG or MPA. The answer was determined by a very labor-intensive process that was years in planning and execution. The bottom line was that relapses were more common in the group receiving Cellcept (55%) compared to the group that received Imuran (37.5%). The risk for major relapses with Cellcept was even greater. The authors conclude that their study fails to support Cellcept as a first line choice for maintenance of remission in WG or MPA, findings that were the opposite of what they originally hypothesized. This is important and reliable new knowledge for the clinician.

2. Discontinuation of maintenance therapies appears to be associated with a higher rate of relapse compared to continuation of treatment. However, the risk-benefit formulae of long-term maintenance therapy vs. discontinuation and treatment of relapses requires further study before we can recommend life-time therapy for all patients.

[Jack]

Bit of a bomb shell there! I believe Imuran is considerably cheaper too. I suppose the question now is - should anyone consider changing if they are not having problems with Cellcept? I think I'll ask this at my next consultation.

[JanW]

That's why I put it out there verbatim Jack. I know that I have written often on here about how Peter Merkel (Boston) always refers to Cellcept as a "Cadillac that drives like a Ford" but forum members will sometimes chime in that their docs recommend it over Imuran. What I found most telling is that this was exactly the opposite result that the doc thought was going to occur. People should surely be asking about it. When I first asked about whether it would be tried with me if mtx were to fail, my doc was very lukewarm about it and noted, "it's manufacturer definitely likes to push it for use in vasculitis."

And yes, it's quite a bit more expensive than good old Imuran.

[Jack]

When I was first treated and suffering repeated flares, the regimen was ctx, then azathioprine (Imuran), then Neoral (later replaced by Cellcept). From this I concluded that Imuran was a more powerful and effective drug than Cellcept, but there were problems with its long term use. This was all 15 - 20 years ago. It now appears that the side effects are no worse when using Imuran if properly monitored so you could say that my own experience supports the latest position.

[elephant]

I am on Cellcept 2000mg? In the study did they study dosage amount re: beneficial to sustain remission? I was on Imuran and had allergic reaction to it. That is what the hospital pharmacist thought. I am wondering do I risk trying it out again?

[Jack]

I don't think the result is strong enough evidence to warrant an immediate change if you are currently having no problems with Cellcept. It is just something to be taken on board when making the decision in the first place or considered for a future change.

[Sangye]

I was already on Cellcept when I first started seeing Dr Seo. He thought it was controlling the Wegs fine, and remarked that even though he didn't normally put patients on it instead of mtx or imuran, he didn't want to mess with something that was working for me. (He had a moral objection to the cost of it, too.) Jack, I can't imagine a doctor taking you off it when it's worked for so long.

I was on 2,000 mg for about 2.5 years. Like I said,Dr Seo thought it was controlling the Wegs but I felt the dose was too low. I still had a number of symptoms that I'd had with active disease. When those symptoms gradually worsened I asked to increase the dose. He attributed my symptoms to being out of shape. I got worse over the next 3 months. Due to a communication glitch in his office, I was unable to reach him for 2 weeks so my JHU hematologist increased the dose to 3,000 mg. I felt better immediately but it didn't work fast enough to stop the flare. He said if I ever go back on it we'd start at the higher dose.

The study does confirm a trend that I've noticed for awhile now, including when I was a member of a different online group. It seemed to me a lot more people on Cellcept were having serious flares compared to imuran.

[pberggren1]

I remember back in January of 2006 I switched Rheumys because I had moved. He took me off mtx and put me on Imuran. He shook his head as to why my previous Rheumy would put me on mtx. I stayed on Imuran until about August of 2006 and then just quit on my own and did not see any docs until I had my flare in November of 2007. During this time I did quite well. I call this the best time since dx with Wegs. I could get up every day and go to work and have energy to go out in the evenings.

[JanW]

I agree that this shouldn't be read as "get off Cellcept immediately" but rather, why would you go on cellcept first, rather than imuran or methotrexate.

[LisaMarie]

ok....i don't like this study.....i failes on mtx...imuran is too strong..almost killed me..cellcept is what he wants to put me on and cytoxin monthly....this info is really depressing...1-5....is not my idea of fun n unless i find i combo that works...that is what i am looking at....i already gad one close call that was way to