Posted 1/22/2019 2:56 PM (GMT 0)
Hi everyone... wanted to give an update to give hope. Severe Pancolitis patient... Mid October 2018 after 4-5 months on 30-40mg of Prednisone aka the devil's tic-tacs... I started on 10 mg Xeljanz twice per day. I began seeing results in 3 days. I did a rapid (too rapid, but was sick of Pred) taper off of Pred and have not looked back... By early Dec I reduced from like 10-12 BMs a day (down from the 20+ a day when not on Pred) to 3-4 BMs a day... I still also take Mesalamine, but this Xeljanz is the bomb... side effects so far have been the expected increase in cholesterol (LDL from 83 to 162! in 1 year), but goodness, my SED rate drop from the 40s to 11 today. I had increased 35-40 pounds on Pred, so Doc wants me to lose 20 pounds then test cholesterol again to see how that is doing... but I am so so happy that by Jan now I've even eaten salads ok (not going to do that too frequently just in case) and I will take 3-4 BMs a day with no bleeding all day. Now if I can just get BCBS of Texas to approve the prescriptions (in my 3rd month of appeal) that will be great.... However, Pfizer is supplying me with free Xeljanz while on appeal. Hope this gives some hope and I know that we are all our own Petri dishes medically and it might not work for all, but for this guy, after also trying Remicade for 6 months (it did zero. It was like getting injections of saline. ZERO effect), I thought maybe this post would give others hope. Interested in hearing others experiences with Xeljanz