• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

If you could try Ritixumab would you?

ramakentesh

Senior Member
Messages
534
I am seeing my Rheumatologist tomorrow and last time we spoke he mentioned all the disease modifiers he had used on Ankylosing Spondylitis (which I developed at the same time as POTS/CFS). One was Ritixumab. he is however pushing for TNF alpha inhibitors like Humira.
I was going to jump on the Humira but then I heard some scary stories about development of MS or the local guy that died 9 months after starting it of blood cancer. While Im far from well and I guess I dont have a huge amount of quality of life to defend particularly during relapses, I seriously dont need any other problems to deal with...
So Im wondering whether I should pursue Ritixumab for AS with the chance it might also improve POTS??
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I did well with Humira but it was no cure for me and the doctor I was trying it through sadly passed away. Would be very happy to try Ritixumab. It's been nearly 30 years of trying new things. Access and the cost are very important factors as very little available in the UK as clinical trials or on the NHS.
 
Messages
13,774
If it was a treatment for another condition I suffered from, then the positive CFS studies might be enough to have me favour it over other alternatives. It could be worth taking a copy of the CFS/Rituximab paper with you when you talk to your doctor... although there is a danger that any mention of 'CFS' will cause more trouble than it's worth.

Good luck with it, and I hope you find something that helps with your health.
 

ramakentesh

Senior Member
Messages
534
I did well with Humira but it was no cure for me and the doctor I was trying it through sadly passed away. Would be very happy to try Ritixumab. It's been nearly 30 years of trying new things. Access and the cost are very important factors as very little available in the UK as clinical trials or on the NHS.

Did you have any orthostatic intolerance type symptoms and did it effect them?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi there, I think I answered on your other thread. Yes I do have OI issues and I didn't notice any increased problems. Good luck with your decision.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Id be willing to try Ritixumab even if I didnt have another condition other then ME. Its probably the only drug which is looking hopeful at helping us. (I wouldnt trial Ampligen thou, those patients all seemed to go back to how they were originally, Ritixumab is looking more hopeful).