Rituximab experiences?

[whisperit]

I'm still waiting to hear the results of my myositis investigations, but my symptoms continue to worsen. My rheumy was clear that the treatment of choice is iv prednisolone, but he also mentioned rituximab as a possibility. Given my severe problems with steroids, I'd be glad to hear of people's experiences with rituximab.

- effectiveness (especially in flares)?

- what other meds were you on at the time?

- how soon does it provide symptom relief?

Thank you x

[CarolMcl]

Hi Mike

Sorry I'm of no use with any of your questions but I really do hope you get some relief very soon. Thinking of you, take care xx

[whisperit in reply to CarolMcl]

Thanks CarolMcl. Good wishes always welcome

[misty14]

Sorry Whisperit your symptoms are worsening. Do hope you start treatment soon whichever is chosen. Sorry can't help more but all the best. X

[whisperit in reply to misty14]

Thank misty14, I have decided that I am not going to be rushed, and will wait for all my test results to come in before deciding what to do x

[misty14 in reply to whisperit]

That sounds like a good plan Whisperit although time is of the essence if it's myosotis because further muscle damage needs to be prevented quickly!. I hope you get the results as soon as possible and you don't have to chase them!. It's horrible having it all hanging over you and I bet it's all going round and round in your head as to what you want to do. Also don't forget it's your body and you have to be happy with the proposed treatment and be the decision maker!. X

[weathervane]

Hi whisperit , i have Sjögrens and before rituximab i was in a constant flare, lymph nodes all enlarged, muscle and joint pain, complete exhaustion. Salivary glands blocked , i was not functioning . The rituximab made a big difference, though it does take time and there was even more improvement after second set of infusions. I was on plaquenil but had to stop it last November as wbc was very low ( stopping it made no difference!! ) . I hope you find a treatment that suits you and you improve, best wishes xxxx

[whisperit in reply to weathervane]

That's useful, weathervane, thanks. You must have had a horrible time of it - hope things are better for you now x

[Melba1]

Sorry there’s no been no improvement for you 🙁 Are you in hospital? My rituximab experience has been mixed. I had a weird reaction to it (very unusual apparently) in that a few days after each infusion I developed extreme orthostatic intolerance, literally couldn’t stand up and remain conscious, crazy heart beat etc, that lasted quite a few weeks and caused awful fatigue BUT I also noticed quite a quick (6 weeks in ish) almost totally absence of joint pain and my brain and nervous system are very much back to normal a few months post infusion. I was very ill before I had it so mainly positive I’d say. It hasn’t helped that much with fatigue though which I know is awful for you but might help in some people. My B cells were zero at last blood test which is the aim so think it’s officislly ‘worked’.

I don’t think there are miracle cures for us at the moment but it’s mostly very well tolerated so well worth a try? Especially with your problems with steroids.

I find steroids most effective for me and was on 30-35mg at same time as rituximab but have managed to get down to 10 now which I couldn’t without it. Also on methotrexate, hydroxy and beta blockers etc.

Some consultants seem to take a while to get permissions for rituximab so might be worth agreeing it anyway then you can always back out. Although mine was approved within a week and it was booked for 2 months away but when he saw how ill I was he arranged it within a few days but think big London hospitals have more resources/ flexibility sometimes.

Good luck- let’s hope this is the answer for you xx

[whisperit in reply to Melba1]

That's a really useful report, Melba1 - its not much consolation for you having o go through it, perhaps, but sharing your experience really does help me. Thank ou x

[Wenwen]

I had Rituxiad, IVIG and prednisone for Myositis. They worked very well for me. There are lots of info on The Myositis Association web site.

[whisperit in reply to Wenwen]

thanks for pointing that out, Wenwen. Will take a look today x

[Bakbre]

Hi there

I have UCTD, RA and Small Fibre Neuropathy and after lots of different medications which didn't work, ie Methotrexate, both tablets & epi pen (spent all the time in the bathroom!), Azathioprin (did nothing at all) Lefludomide (again didn't do anything) and others which I won't mention. These were all given by various locum consultants over 2 1/2 years. We finally got a permanent Consultant and she said she was going to get me on Rituximab (the reason it takes so long is they have to justify it to get it through because NICE say it is too expensive!

I can honestly say I didn't have any side effects and I have felt better than I have for years. My joint pain, muscle weakness and swollen joints all but disappeared, as did the brain fog. It took about 3 weeks to kick in with me but I have spoken to others who said quicker or slower - I think it depends on the person really. I had my first sessions in December and I am due for another session next month. I would say go ahead with it, what have you got to lose - I got to the stage I would have done anything for some relief.

Good luck!

[whisperit in reply to Bakbre]

Useful info thanks. As you say, there comes a point where one will try anything. Good to her it's worked so well for you x

[Suhaila_issa]

Hi whisperit, I have had about 4 cycles of rituximab now and I should be having my 5th one in a few months. They usually say it gives relief for about 6 months but in all honesty i can go even a year until i need another dose. They do say that when you’ve had rituximab it usually gives your next flare boost and so it worsens, but fortunately I myself have never experienced that. I am very keen on rituximab and it helps me alot but then again everyone is different and symptoms differ too. When I had just started the rituximab i was on hydroxychloroqyine and mycophenolate but after a month or so i was taken off the mycophenolate and stayed only on hydroxychloroquine and I was doing just fine! Once you’ve had the rituximab you should feel the difference in about a month. Hope I was able to give an insight to the drug.

Take care xx

[whisperit in reply to Suhaila_issa]

that's very encouraging. The detail of how you've experienced it is very helpful, thank you. X