Xeljance and blood clot risk

Hi Spring,

I would defer to your GI or PCP around your personal blood clot risk. Have you considered getting a surgery consultation just to look at all your options for the future? Based on your signature, you seem to have had many severe reactions to UC meds, including pancreatitis and osteoporosis. I would be reluctant as well to go back on pred. especially since we know it's one of the drugs that increases likelihood of severe covid based on the IBD database.

Meds alone are not enough to put most people in remission from UC if you look at clinical trials (30-40% remission rates, 20% placebo). That's why so many people with UC search for alternatives. Remission rates are way higher for mesalamine and biologics if you do some combination treatment, including probiotics, diet or add curcumin. There was just one study on combining biologic (remicade) with a plant based diet, which led to a much higher remission in severe UC of over 70%. Normally, remission rates for biologics alone in severe UC are way, way lower. Have you tried diet or high quality probiotic in combo with the biologic you are on?

There is no way I would ever get remission without diet, probiotics and supplements i'm also on.

Spring, this might interest you:
https://www.healio.com/news/gastroenterology/20191118/more-data-needed-on-xeljanz-venous-thromboembolism-risk-in-ulcerative-colitis

At the moment the thromboembolism risk is definitely there for RA patients but it's not clear if the same risk is present for UC patients. I did know the numbers for the RA patients at one point but now I've forgotten and would take a while to dig them up. I seem to remember it being twice as high as the rate on infliximab. But, the sample population were all over 50s and many with other risk factors. Regarding the platelets factor, best to discuss with your doctor.

Remission rates in clinical trials are often lower than in clinical practice due to the time scales and the way remission is defined. In the end, a drug either works for you or it doesn't and until the docs have deciphered a way to predict which drug will work for each patient, we are stuck with a trial and error approach.

Which dose of xeljanz are you taking? The lower dose has a better safety profile but if you reduced recently that might be why symptoms returned. I started to flare 3 months after switching to the low dose, but got it under control with mesalazine enemas, and have stayed on the low dose since.

plantbase diet is a very promising stuff according my opinion. Probiotics is not proven that there os any positive effect.