Vasculitis UK
5,431 members5,002 posts

How long for Rituximab to work for Wegeners?

I had my 1st Rituximab infusion 4 weeks ago and 2nd one 2 weeks ago. I have yet to feel any benefit and in fact my symptoms have worsened as my steroids are quite low and have phased out Azathiaprine. I just those that have taken Rixuximab how long it took to work?

20 Replies
oldestnewest

I started my first Rituximab 4 weeks ago (one every Monday), the last being today. Up to now I have felt no relief from my symptoms - but was told it could take anything from a month to several months before I begin to see any difference. I suppose the blood test will be a good indicator and I get the first results on Friday.

Reply

Are you on any other immunosuppressant's at the moment?

Reply

I have had two separate sessions of RTX. The first pair produced almost instant results, much to the surprise of my rheumatologist who had indicated it could take up to 6 months. The second pair almost 2 years later probably took 6 to 8 weeks before the effects were fully felt.

Reply

Are you still on RTX and is it still working for you?

Reply

It is a bit over a year since my last infusion of RTX. I have been weaned off prednisolone for over 8 months. I am still on MTX (weekly). I guess if I flare again I will have RTX again (nothing else worked) but there are no plans at present whilst I am in 'remission'.

Reply

That's interesting, have you been on MTX throughout? I have been take off Azathioprine so hopefully the RTX will work.

Reply

Apart from a short break I have been on MTX for about 4.5 years since my initial Cyclophosphamide treatment was completed. I still hate it with a passion as it makes me feel ill for up to 3 days every week! I have heard of others on RTX being taken off MTX but my consultant wants to continue for another year at least

Reply

I have bee toldthat very few people require an additional maintenance therapy, so I am hoping I won't need to. Thanks for the info. I find it really helpful to hear other peoples stories. I felt dreadful on MTX, was on it for 6 months!

Reply

Hi, I had my first 4 infusions 4 months ago and had a follow up a few weeks ago. Only now am I starting to really feel brighter... still have some symptoms but feel stronger. I was told it could take up to a year/ 18 months to get the full effect. That makes me hopeful that I may continue to improve. Fingers crossed for you, but listen to your body, if it tells you to rest - REST. Good Luck

Reply

Thanks Jane, are you still on any other immunosuppressant's?

Reply

Hi Jane, thanks for your response. Can you I ask would other immunosuppressant's you have been on during this period. I am only on prednisolone and am concerned about the overlap?

Reply

Hi, yes, I'm on pred. Now tapering down, currently on 10 daily. Other medication: omeprazole, thyroxin, losartan (I have damage to my aorta) and asthma inhalers. Keep positive and allow the drugs time to work and allow your body time to heal. Best thing I've learnt (although not that I do it all the time) is you cannot push yourself to get better, it happens when it's time.

Reply

Thanks, were you on any other immunosuppressant's and when did you stop them?

Reply

I was on azathioprine, I stopped it the day before the first infusion.

Reply

I stopped mine the day of my 2nd infusion. Did you have to increase your pred during the 4 months period? Do you mind me asking how long you have been on pred?

Reply

Hello Maudy

Yes, I agree with the others, I was told it could take up to 6 months to see results and it would depend on other treatments you have had as to how fast this one took effect. I however saw results faster than they expected. I get my treatments two weeks apart every 3 months and when I am one week out I am looking forward to it for the relief.

Good luck!

Reply

Hi, I have just read your post I had a course of rituximab last year because the cyclo didn't work. I was taking azathioprin and still taking it , I'm also still on prednisolone although we are trying too get that down but last time I cut it down from 10mg my bloods went up so I had too increase it again. I was told I might be able to wean off them after a period of 5 years if my condition stays stable.

Reply

Thanks for replying. How long did the rituximab take to work for you after your 1st infusions can you remember? I have stopped the azathioprine and am on 17.5mg of pred, but struggling with my symptoms and generally feeling rubbish,

Reply

Hi I can't really remember , I know it was not immediate like when I took prednisolone for the first time, it was more gradual. My consultant did tell me it could take upto 6 months too work . I'm a little surprised you have stopped taking your azathioprin , do you take another immune surpressing drug instead? I'm reducing my steroids down by 2.5mg per week my azathioprin is now 175mg my consultants are reluctant to put upto the maximum dose of 200mg as it effects my alt (liver count) I had 4 infusions a week apart , it's been exactly a year since I had them . Hope you feel better soon .

Reply

My only symptom of GPA / WG was aggresively recurring & life threatening localised subglottic stenosis, no systemic symptoms. Retuximab has been a great success for me, & brought my stenosis symptoms under control by about 12 weeks. In July 2015 I had my first 1 gram infusion followed by 1g 14 days later. I've just repeated the same dose 12 months later. I've felt well & symptom free for 10 months ☺. No unpleasant side effects during or since infusions. I take low dose cotrimoxazole antibiotic continuously, to prevent infections, and despite Retuximab being an immunosuppressant I've had no infections or ill health in 12 months. I initially took 20mg prednisone tapered to 0 over 8 weeks, no oral steroids needed since. I'm writing this to reassure other people that Retuximab can be a great help. I had no discomfort during infusions, just a little drowsy from the antihistamine administered before the Retuximab infusion. No unpleasant side effects whatsoever in the 12 months since. For me its been a better alternative than more aggressive, toxic chemo like cyclophosphamide. I didn't need any additional immunosuppressant meds to stop the subglottic inflammation. Retuximab has given me back my health & quality of life & stopped me needing tracheal dilation surgery every 3 months. I had no funding problems, Retuximab was administered by Royal Free Hospital London within 1 week of diagnosis. Thank you NHS!

Reply

You may also like...