Quite a few of us believe that part of this condition is immune related.
I’m due to see my rheum proff next month when I plan to ask him to switch my treatment. I was taking tociluzamab but it lost its effect after 7 years and was giving me blinding headaches which I think is in part due to PFS. I don’t think it put a dent in PFS. either.
I plan to float a request for one of these newer drugs in the hope of a quell in some of the PFS symptoms.
If it works, I got it via the back door because of rheumatoid but it could offer a treatment option for the wider community.
These are the latest immune fighters
Rinvoq, Olumiant , and Xeljanz .
Any views, a suggested preference from any of the knowledgeable guys in this particular area would be appreciated.