Rituximab

[Sangye]

I was on 2,000 mg of Cellcept for 2 yrs (no pred). I still had a lot of joint pain and stiffness while on that dose. It kept me from exercising at all. After about a year, I began to have a sense that 2,000 mg was enough to keep me from a flare, but not enough to really get the Wegs under control. The Wegs was smoldering.

In February of this year, I got even more symptoms of active Wegs. Nothing major, but they were the ones I had at disease onset, so I was suspicious. I wanted to increase the dose. My blood work was normal (ie, no inflammation). My doc thought it was a combo of drug side effects and damage, and general de-conditioning from having been sedentary for so long.

By spring, I grew much weaker and developed lung symptoms that wouldn't respond to antibiotics. My hematologist was desperate to help me and increased the Cellcept to 3,000 mg. I continued to go downhill. Within a couple weeks we realized it was a Wegs flare that had begun in Feb. Cellcept takes a month to fully kick in. Not enough time to get the flare under control, so we had to bring in the big gun--cytoxan.

My rheumy acknowledges that if we had increased the Cellcept sooner, I would have avoided this flare. I can't fault him, since my blood work was fine and it wasn't at all a clear clinical presentation. But now we know that I can tell.

If I go back on Cellcept, he said he'd put me on the 3,000 mg dose to begin with.

[elephant]

Thanks Sangye, I'm hoping the cellcept works for me. Glad your feeling better.

[Sangye]

I hope it works for you, too. I liked Cellcept. The only side effect I had was diarrhea. It's common, but I don't think I developed it until I'd been on CC for a few months.

[BonnieB]

I think the real effect of the rituix hasnt come to you yet. it really wasnt until the last 2 weeks (my son got his 4 weekly tx's mid sept- mid oct) and just now is beginning to truly be pain free,stronger and off all pain meds. That's huge- he was on more pain meds than I or any of my colleagues had ever seen- young metabolism I guess. Even though his cd-20 lymphs were zero 1 month out- he still had immune complexes causing active disease. You are right- I am sure the joint pain and swelling is the disease but I"ll need his doctors to convince him. I think you have reasons to be optimistic. Let's all be optimistic!

[Sangye]

That's very encouraging, thank you!

[Jack]

I like my Cellcept!
I'm only on half the intended dose due to an early communication error with my doc (I take 360 mg twice/day), but it has kept my Wegener's stable for many years. Before that, I was taking Neoral (cyclosporin) and having repeat flares requiring stronger treatment.

[timbo vic aust]

i dont understand what all these other drugs you all talk about are for and what they do and are used for celcept , cyclosporin, imuran , just to name a couple from memory my rhuematologist has'nt spoken to me about any of these as yet . or do they use these for the kidney involvement .

[Jack]

There are a whole host of immune system supressing drugs and just to make things even more complicated, the names can be different from country to country. The ones you list are just some of them.
I seem to remember that the one you are takeing is methotrexate. This is one of the more recent additions, but does not suit everyone. There is no reason why you should have heard of the others unless you have been around the disease for a long time or have a problem with your current medication.

[Sangye]

Quick info about Wegs drugs :

Chemotherapy
Chemo drugs are used because they have the side effect of suppressing the immune system.

Cytoxan/Cyclophosphamide/ Ctx-- is used to get active Wegs under control. Heavy-duty drug. The harshest Wegs drug. Until this year, known as the "gold standard" in treating active Wegs. Causes infertility in majority of patients. Lifetime limit of how much ctx one can receive due to its toxicity and carcinogenic abilities.

Methotrexate/ Mtx-- is used to maintain Wegs remission. Often used after a course of Ctx to continue getting active Wegs under control. Typically not strong enough to get highly active Wegs under control or to induce remission. Much less toxic than Ctx. Often used for many years.

Imuran-- similar to Mtx. Initial blood test must be done to ensure you can take it. Regular blood work is done to monitor effect on liver.

Immune-suppressant

Cellcept-- targets particular white blood cells involved in Wegs (B cells). Fewer side effects than chemo drugs. Used outside of Wegs to keep kidney transplant recipients from rejecting new kidney. Not strong enough to induce remission or get highly active Wegs under control. Is used to maintain remission.

Biological Agents

Rituximab/ Rituxan/ Rtx-- genetically-engineered monoclonal antibody that selectively wipes out B cells. Non-chemo. Well-tolerated. Given in IV infusions very infrequently (once or twice a year). New study shows rtx is as effective as ctx in inducing remission. Extremely expensive. Could become new gold standard for Wegs.

[timbo vic aust]

thanks for your info jack - sangye very helpfull now i understand. it's like what we spoke about once before, all the different drugs but only certain ones work for certain people + depending on the severity of the condition which one to use.