I've been on Fingolimod Accord (generic Gilenya) for a year, Gilenya for 8-9 years, and before that Rebif for like 13 years? Medicated at 18, ill since 12. Never felt better really. Symptom free and side-effect free.
The Rebif was kicking my ass with its side effect, I attribute my constant intrusive suicidal thoughts during that time to the medicine, but other than a lower-than-normal heart rhythm I am a very happy user of my current medication.
I was diagnosed almost 15 years ago and doing fairly well. I skipped the 'CRAB' drugs specifically because of the depression/suicide risk. Being already at risk for those things I thought the negatives far outweighed the positives -- personal choice.
So glad Gilenya is working for you! Some of the new drugs are quite amazing.
Neuropathy is not a serious issue for me, but like depression, eczema and the rest it's something that I get as either as a co-symptom in a flare or a signal that a flare is coming. The docs like to use c-reactive protein as a biomarker, but I tend to find it's a trailing indicator of problems. I start expecting a flare when the subsidiary symptoms appear (eczema etc.) as they tend to be leading indicators. The problem is that because my GIs are only really interested in GI symptoms, they see those things as unrelated until the GI symptoms appear.
Other folk I know with AI diseases have seen similar patterns and have for example seen improvements to things like PN when they went on anti-inflammatory drugs (5-ASA in the case of one friend) which were prescribed for UC.
https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...
It really feels at this point that not by connecting these diseases together and treating them as a class, we're missing the woods for the trees. Sadly, all of the economic incentives are to keep treating them separately and reductively because chronic diseases are great long-term revenue generators. TBC, I'm not attacking the drug companies here (UC was a killer until pred was discovered in the 1950s and Vedolizumab is working fantasically well for me) but we need the immune system to be treated as genuine clinical and research discipline to really cure these things.
My last UC flare was preceeded by a bout of shingles which is caused by an opportunistic latent virus. My doctors always talk of my immune system as being over-active. It really seems to me that it's more the immune system becoming disordered - which latent viruses play a major role in. My docs aren't remotely interested in having that discussion because it doesn't involve the details of gut epithelial cells. Fascinating as they are, I don't think we're going to cure UC or any other AI disease by focusing on them.
In MS we're getting closer to finding the cause and ultimately the cure. It does take a while for research to get funneled to the right person with the right specialty and right funding -- sometimes years, decades.
I'm not sure tying the diseases together would be a winning strategy...? My MS could be caused by the EBV living in B-Cells and a genetic or environmental (or both) trigger. Your UC may be caused by a certain bacteria living in your gut triggering a T-Cell response by a different genetic or environmental element.
And yeah, the doctors don't want to hear my pet theories. hah. I have done my own labs, brought them in, and the doctor just gives me a condescending look like - why are you even trying? I guess they don't know how desperate most of us are for answers.
Eh, the strongest evidence is one large study from last year of 10 million military personal followed for 20 years that identified ~800 total cases with a hazard ratio of 32 for EBV seropositivity.
There’s strong evidence of an association but I don’t think the causation question is answered. The challenging thing to reconcile is how low the incidence of MS is despite 90% EBV seropositivity in healthy controls (99-100% in MS).
As a person with Multiple Sclerosis seeing a neurologist I have been wondering this very thing since my diagnosis. I am on a B-cell depleting drug. It feels silly talking to my neurologist about my B cells. Lots of tests to determine neurological function, but very little tests done on immune function.