Rituxan

[Lily0303]

I was on Rituxan a little over a year ago. I went to the ER the other day, and the rheumatologist the doctor was talking to mentioned that as a long term treatment. My fiancé went online as soon as he heard and from what he found in the studies it's not good. Should I be worried, or just wait it out till I actually talk to the doctors myself?

[Green Grass & High Tides]

I would look up NIH published studies and talk to the doc. I haven't seen any scientific studies invalidating Rituxan. It works for many people. Better for some than others. I charted my symptoms and after a year and 4 infusions we could see it wasn't fully controlling the disease. Cytoxan worked better to control the disease but was brutal on my wegs weakened system.

Best wishes
Tom

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[Lily0303]

Yeah I was on the cytoxan when I was first diagnosed but they had to take me off it too. Was wreaking too much havoc, you could say the retuxin I had 5 infusions but showing the same signs as my last relapse. It wasn't as hard on me but still showed me down a bit. Been on azathioprine too and that was ok. Just don't want to be getting worried for nothing.

[Birdie]

Should I be worried, or just wait it out till I actually talk to the doctors myself?

Learn all you can before talking to the doctors, so you can ask the most informed questions. I haven't taken it but a bus load of the people who are active here can probably give more combined insight than any one doctor. All I can say is... run away from cytoxin as fast as you can unless there is no other option. It's only a short term act of desperation. Azathioprine is what's working for me, with no detectable side effects. Not sure about long term consequences since it's only been a few years.

[drz]

Many people use RTX as a maintenance drug when nothing else seems effective enough. No one knows much about long term usage effects since it hasn't been used that way very long. Because it is expensive too, it is not very likely to be over used and is only used when it is thought necessary to save ones health. So if the doctors really think you need it, RTX sure beats having Out of Control Wegs raising havoc with your body.

[Alysia]

I am on rtx almost 3 years. Every 6 months or a bit more. I had already 5 IV. Soon number 6. First 2 for active wg, 2000mg. The others 1000mg for maintenance. Mtx didnt work and I couldnt bear Imuran. I am in remission.

[MaxD]

I'm on Rituxan for maintenance, had one infusion about 9 months ago and may have the next one sometime soon. My case is much less severe than yours seems to be, though. Dr Spiera in NYC recommended this treatment for me, and did explain that maintenance therapy is more art than science, requiring a careful balance between overtreatment and undertreatment. Since the long-term (many years out) effects of Rituxan are less well known (but nothing harmful is known) my docs monitor my immunoglobulins and B-cell counts regularly, the first to make sure that I'm not immuno-compromised and the second to eliminate the chances of a relapse. This is the regime for at least the first two years (when relapse rates are very high for those with sinus involvement). Interestingly, relapse rates are significantly less for those with kidney involvement (though the consequences of repeated relapses is worse, over time).

If Rituxan has already worked for you in the past, I don't see an issue with using it again. But it's best to get a consult with a specialist at one of the Vasculitis centers and ask all the questions that worry you. Good luck!

[MikeG-2012]

For me, it's been the best thing that has happened in my wegs treatment. 9 down and #10 this week!

[wegme]

Rituxan is really the best way to go, especially if you have had it before and had no problems. As others have said on here stay away from cytoxin if possible. I think most docs don't prescribe it much now anyway. I took Rituxan in 2012 and it keep my Wegeners under control until this year, so that's not too bad. I just finished another round and now my doc is talking about using it as a maintenance drug to help keep me from falling into flair ups. This sounds good to me since no one mentioned putting me on any maintenance drugs back in 2012 (or 2001 when this started). One last thing to mention is to make sure you have a doc that treated wegeners before, if not, then find one that does, even if you have to travel.

[Lily0303]

Thanks everyone am feeling a bit better about all of it. I did have one more question, does anyone know if it's possible to get pregnant after being on all these? Have been on cytoxan, imuran, and retuxin, but me and my fiancé have been wondering about it.