Has anyone ever taken rituximab, Rituxan?

[Skyllark]

[daisy11]

Hello

I took Rituximab about two years ago ( Have had about 4 courses) this was for ITP but unfortunately did not last long.

[ltespain]

I have had 3 cycles of Rituximab over the past couple of years, 4th cycle in August. It has been my life changing drug as have just finished a year back at work after 10 years on long term disability and can be hands on mother to my small kids. It wasn't an easy decision to agree to the treatment but was sick enough that desperate times called for more 'extreme' measures and I got lucky that second cycle kicked in real benefit and 3rd cycle has maintained it.

[This 4th cycle is protective measure against severe stress due to helping care for my father with MND, my kids, and working and having to travel between Spain where I live and work and the UK where my parents are.]

I do also continue with my 'standard' drug regime of Imurel/Imuran; steriods; plaquenil and warfarin but we have reduced my steriods.

Happy to answer any questions about the infusions or side effects etc.

Louise

[MrsBL in reply to ltespain]

My Doctor is due to start Rituximab in the next few weeks. I have just completed 3 treatments of Cyclophosphamide with Prednisilone. The Prednisilone worked really well on the joint pain however not sure what, if anything the Cyclophosphamide has achieved. My platelets have gone up but then I am only just newly diagnosed with APS and have had repeated Venous and Arterial Clotting. Please can you help me with what effects (good and bad) that I can expect from Rituximab? I stay on Clexane Injextions twice daily along with Asprin and a daily maintainence dose of prednisilone. I am at a loss with all of this, especially having been diagnosed only 3 months ago. Any advice and the benefit of your experience is very much appreciated. Thank you.

[Skyllark in reply to MrsBL]

funny that you are on Prednisilone - they have stoped this treatment with people in Canada - no proof that it does help with aps(unless during pregnancy) - and with the water retention issues can cause masive edema that will casues alot of internal organ issues - at lease that is my wifes experience with it...

[MrsBL in reply to Skyllark]

I am so glad you said that as I have noticed that my ankles are really swollen especially the few days after having the Prednisilone IV. I am not pregnant and have been advised that these treatments could throw me early into menopause. With the first treatment of Cyclophosphamide and Prednisilone I got a very false high from the Prednisilone but with the second one not so much and with the last one no false high at all. After the first treatment I also suffered swelling and a lot of pain in one calf with redness but although they suspected DVT but by the time they carried out Ultrasound Scan they said that it could not be certain either way. By that time I also had pain in left lung so a CT scan was carried out for which I am still awaiting results. The reason they are treating quickly and agressively is that they fear that I am fast approaching a cataustrophic episode due to the extent of clotting over the last 18 months, which has been extensive and mostly arterial. Sorry that is such a long answer but having only just found this site I am really grateful that you have experience I can share.

[Skyllark in reply to ltespain]

what side effects did you have?

[MrsBL in reply to Skyllark]

I was not sure what to expect and I am only just beginning to realise that some of what i thought were side effects from the treatment could be from the disease. The woolly head and feeling unbalanced etc. Please can you give me any idea of what to expext from Rituximab?

[Mew808]

I've had one dose and my next is next week. My APS is effecting my lungs causing resp failure. Between rituxin and steroids it has helped

[Skyllark]

This is Skyllarks wife, I have APS. Just wondering what benifits people have had from the rituximab treatment? Just wondering if it is worth trying.