rheumatoid arthritis

[willi-ams]

I have had rituximab infusions for a number of years and all worked very well. the last 2 infusions have not worked at all. My consultant is at a loss as previously i had taken methotrxate. it is believed that this DMARD drug was the possible contributary factor of my getting High Grade Non Hodgkins Lymphoma. is anyone there who has had TOCILIZUMAB without any sideaffects

[Moomin8]

Hi - Sorry that I can't help regarding Tocilizumab, but I'm sorry to hear that your rheumatologist is stumped. Surely there is something else you can try? There is more than one rheumatologist in a team to consult? May I ask more about your possible mtx induced high-grade Non Hodgkin-Lymphoma? What happened there and what are they doing about that? I thought mtx was one of the chemo drugs to treat NHL??

[willi-ams in reply to Moomin8]

Hi Moomin8. Thanks for reply. I had severe pain around the liver this was then diagnosed as non hodgkin- lymphoma. I then had R-CHOP chemotherapy with a 3 week cycle for 7 sessions. It is now 8 years and although not told I am in remission I feel that I am now safe.

[willi-ams in reply to willi-ams]

Thank you all for your encouragement.

[ruth_p]

I've been on tocilizumab for over 2 years and the only side effects are that I bruise more easily and have allergies. Although the allergies started when I was in Enbrel.

[Clare-NRAS Partner NRAS]

If you would like to actually talk to someone over the phone who has been on tocilizumab we have trained telephone support volunteers who we can match you to one who has been on this drug. To arrange a call at a mutually convenient time just call the NRAS helpline on 0800 2987650 and Beverley, Caroline or Katie will be happy to sort that out for you.

[Hobbits]

Sorry you are dealing with this , I have not heard of Mtx doing this, but it has been a very long time since being on Mtx. The advice given above is excellent, hopefully you can chat with an expert by phone to get some answers. I'm not on rituximab but it is the drug that is being looked at to switch me to from Enbrel. I have RA and recently diagnosed with Crohns and Enbrel doesn't work for Crohns. Rituximab will work for both disease.

Wishing you all the best.

[premierscfc]

Firstly welcome to this forum!

Sorry to hear you are such a bad time. I was on tocilizumab for 4 years, 3 of which were infusion and the last being Sub Cut injections.

During the whole period the only side effect I had was mouth ulcers. Hope it works for you!

[Damaged]

I am about to take the second doses of Rituxan. I stopped MTX in Dec but after seeing my Rheumy today I have decided to go back on it. I am having major issues with my hips and shoulders, knees and elbows etc.. a lot of erosion. I also got genetic screening done and have NHL tclonal whereas most are Bclonal.