LUPUS UK
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Rituximab or Mycophenolate

Hi All,

Do any of you have experience of Rituximab? I've found out today that my lupus/cerebral vasculitis is active again and they're looking to put me on Mycophenolate (again) or Rituximab. Seeing the Consultant again on Tuesday and it would be good to get the advice of lupies using Rituximab. I know lots about Mycophenolate already.

Thanks xx

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Hi there

I have CTD, RA and have just been told I might have small fibre neuropathy. I had my 1st sessions of Rituximab last December after having tried a lot of other medications, for example Methotrexate, Azothioprin, Lefludomide and none of them worked or I couldn't, in Methotrexate's case, stomach them. I then finally got a permanent Rheumy after having seen several locums and never the same once twice over a 3 year period! In this time I was also put on Morphine (never again!) steroids on and off, and the shortest I was on them was 2 weeks and the longest 15 months.

If you go with the Rituximab, you will have 2 sessions which are 2 weeks apart. After that you are supposed to have them every 6 months depending on the patient. Apparently some people can go longer than 6 months so only have it when they need it. With me after the 1st session I felt a little better and 2 weeks later after the 2nd I felt a even better and after about 4/5 weeks I felt great. I actually felt better than I had in years and this has lasted for about 5 1/2 months. I am due to go for my next 2 sessions 2nd & 16th July.

I can only say that for me Rituximab was a life saver. I was really depressed, nothing was working and I was sick & tired of being in pain most of the time. Like you I asked people on this forum because I was apprehensive about it. 9 out of 10 of them praised it. Some said it hadn't worked but the majority said it had. I think I was willing to try anything at that stage and I am so glad that I decided to go ahead and have it.

At the end of the day only you can make that decision but if it was me I would say go for it - what have you got to lose- it will either work or it won't. If you get side affects they will pass and I am sure you have put up with much worse.

I hope this helps and I wish you good luck & good health!

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Thank you for being very honest. At this point I've tried IV steroids and Azathioprine which helped, but I ended up with neutropenia and leukopenia and was taken off it.

Then Mycophenolate which made me feel great with no side effects but white count dropped further and I was taken off it after 4 years.

Since then I've been on nothing because tests were looking like I was in remission, but I always new I didn't feel right.

I've always had reflux and constipation, but over the last year this got much, much worse. Now my entire gastric system is in failure and I'm on a TPN feeding drip for 14 hours a night, 5 nights a week. So, you're right, at this point I try anything. Looks like I'll be opting for Rituximab because, like yours, the feedback I've had had been positive. Wish me luck and thank you xx

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Not a problm - let us know how you get on.

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Hi there, similarly to Bakbre, I’ve been on both cellcept & Rituximab after my lupus fail to respond to other medications. Initially I had reservation about Rituximab due feedback I had read. However Rituximab turned my life around; I had two infusions 2 weeks apart in October, by January following a review, my blood works were amazing, no joint pain, nose sores, stiffness, headaches, all the usually ailments associated with lupus appears to have disappeared. Eights months following another review my blood works were brilliant again & my lupus seems to be in remission. Although I was offered another infusion April I didn’t actually need it. So far fingers cross I’ll continue to stay in remission but i do realise everyone is different but Rituximab is the only lupus medication that’s has worked for me. I am finally getting my life back. Good luck I would definitely recommend this treatment.

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With Rituximab I do not feel drugged but the more I have been given the less it's working for me.

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Ah right.... hope it starts to feel more effective soon Maureenpearl xx

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Hi Lorska1,

If you have a look at past posts on this forum you will be able to see quite a few people who have shared their experiences of this treatment. Go to healthunlocked.com/search/r...

Good luck with your appointment tomorrow. Let us know how you get on.

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Thanks Paul xx

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