Retuximab

I am writing this message as struggling with things at the moment, my husband has just started his first course of Retuximab he is going for his second course on Monday, has anyone had a course of Retuximab before and how long was it before you starting feeling any benefits, my husband had Retuximab eight years ago but forgotten how long it took before he starting feeling a bit better as he is so bad this time, he says that he feels so ill.

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  • Hello,

    Firstly I'm sorry your husband feels so I'll- I know what it feels like.

    I had my first dose of rituximab four weeks ago and only had my second dose yesterday! I'm told I won't need it again for six months. My consultant who is excellent I believe assures me rituximab works slightly different for each person depending on symptoms, progress of disease etc however generally I'm looking at around 6 weeks before I notice any real difference. I have read however of other patients who notice a difference much much sooner some in as little as days. There are also folks who call rituximab a wonder drug as nothing else seemed to work- there is hope.

    I do hope this helps and wish you and your husband the very best

  • Sorry that you have a need to join us here but I'm sure I speak for everyone in wishing you and your husband a very warm welcome.

    You haven't said which form of vasculitis your husband is suffering from but I'm guessing it's one of the more common ANCA associated types such as Wegener's granulomatosis. If you don't mind sharing what he has and where he's being treated it can sometimes help in us providing a more detailed answer.

    I'm a WG patient of five and a half years and had my first Rituximab after six months of chemotherapy which had no impact on the disease. The dosing regime has changed over the last couple of years and the generally accepted protocol developed by Addenbrookes Hospital in Cambridge is 2 doses, 2 or 4 weeks apart followed by a single full dose every 6 months for the next 2 years, irrespective of B-cell count.

    In my case (on the old regime) it took 6 doses over 8 weeks before I felt any physical improvement despite my CRP and C-ANCA markers indicating that all was 'quiet' in less than a month. I was moved to the 6 monthly regime soon after and it was 3 or more months after the initial dose that I really started to feel much better. I now receive an annual infusion as maintenance and have been virtually drug free for two years (I now only take Septrin/Co-trimoxazole & Mucodyne/Carbocisteine).

    As Clipper 26 has suggested, their is variability in the response rate but there doesn't seem to be a particular pattern as to who responds more or less quickly when correlated against disease type, degree of activity or organs affected but generally most people report signs of physical improvement within a couple of months.

    Whilst it's important to have blood tests repeated regularly (mine are done every 2 months) they can be misleading as we have many members who remain ANCA positive but feel perfectly well and vice versa, I've also just discovered that B-cell activity (the cells in the immune system that Rituximab depletes so as to 'switch' the disease off) can still be detected in tissue despite being absent from blood which is why the test is now often not used in conjunction with treatment by Rituximab. All that said, benchmarks can be extremely valuable in indicating a trend in health and I'd recommend keeping your own records.

    If you haven't yet seen the Vasculitis UK routemap I suggest you download a copy from bit.ly/LZWmvw as you'll find more detailed information, specifically about drug treatments and blood tests, and I'm sure others here will be pleased to share their Rituximab experiences.

    Healthy wishes.

    Martin

  • Thank you for your replies, my husband has Wegeners Granulomatosis he has had this for 8yrs, he has just recently had a flare up, not bad, as previously to this it was eight years ago when he first got this and he received treatment of Retuximab and no flare up since then. But this time the hospital said that there is no further damage to his lungs or kidneys only previous damage from before, but my husband said it is different this time he feels so ill, I thought it might be after his first treatment but not so sure now and does't seemed to have improved from when they first dianosed the flare up, but from your comments above I suppose it just takes time, just very worried about him

  • hi there, i'm just finished my second course of rutiximab . last one was four years ago. this time it was done three weeks apart . I too was not feeling the benefit of the results, but it takes time. I spoke to my consultant and he said that i should feel better in a few weeks after the last infusion. well i do feel better but i'm like only 1 week . so take each day as it comes and if it helps write down how you feel, then you can use your diary as a checker.

  • I had the two dose treatment, two weeks apart, about 16 months ago. The effects were almost instantaneous after 6 months of cyclophosphamide that was failing to touch the flare (WG). My rhuemy was surprised it was so quick as he advised it could take anything up to 6 months to work (seems a very long time!).

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