Experience with biologics

I have been on Remicade, Humira, and Entyvio. No side effects from any of them. Remicade and Humira did not help me much. Neither did mesalamine, balsalaside, azathioprine, prednisone.

Entyvio helped a lot, moving my UC from moderately severe to mild. But not full remission.

Just started Stelara 3 weeks ago. No effects good or bad yet.

Good luck!

Hi,

First off, good luck!

I was diagnosed 16 years ago, very lucky, no issues. Major flare 4 years ago, currently in WORST flare ever. Failed Humira after 10 weeks and still on pred (since Aug 1). But I had no side effects from Humira. (prednisone, ugh, massive side efffects......5'1 / 112 pounds to ?????? Jabba the Hutt)

Primary GI wants me to switch to Stelara.

Just got out of 2nd opinion who says Remicade plus Imuran - or 6pm (anti TNF). Will work that out with primary GI next week

You have to make the best decisions you can based on your honesty with your doc, your history, your willingness to commit to treatment properly. Don't shy away from a 2nd opinion, it's not rude, it's appropriate. You have to be your own advocate.

I wasn't "afraid" of biologics, I just felt like moving onto that phase was one less option for the future. Like, what happens when I'm 70???? Then do I get the bag? :---)

You HAVE to stay ahead of your symptoms, be honest with doc. Be well!

P

I've been in a remission 8 years on remicade, no side effects and not any more sick than my normal. We've had a few posters who've been on remicade since the initial clinical trials back in 1999, still in a remission and on it.

Try a biologic and see, as delaying only means more suffering. While I wish everyone had success with a med, there's about 65 percent odds of getting an initial response. Some if us fail meds repeatedly until finding our solution, it's just the way this hyper individualized illness goes. It's all trial and error.

I'm 10 weeks into entyvio - so I got my 3 loading doses - I am still taking mesalamine orally and still strugling with enemas, still having urgencies, so in short I think entyvio has failed me. this sucks because I feel I took a big gamble going into biologics and not to see any improvement because of it.. I may need to try another biologic.

I didn't get any infections on remicade. Had quite a few colds on entyvio though (because it still has some effect on the respiratory tract). I've been on xeljanz almost exactly 2 years and in that time (knock on wood) I've had one cold and one skin infection (that did not require antibiotics). I don't think xeljanz is known for a cancer risk, it does have a thrombosis risk for certain groups of people.

Been in remission for almost 4 years on entyvio. It is slow acting so not unusual to not see a lot of change after only 3 doses. I did see some small changes by then — such as being able to wean off steroids and a lessening of symptoms. By 4-5 months I was symptom free although a colonoscopy still showed I flat and disease at the microscopic level. So don’t give up quite yet. Are you seeing any improvement at all? Even slight?

Remicade was a life saver for me. I was on for a couple years 2013-2015 then built antibodies. When I stopped taking it, I was in remission till about 2019. Been in a mild/mod flare ever since. Luckily low doses of prednisone has been able to keep the flare under control. My GI actually told me to just stay on low dose of pred for a while. I don’t want to but he said I cant take remicade or humira. I would go thru with remicade again if i could. Never had any side effects or nothing. Hardly had a cold either and if i did catch a cold is was very mild and gone within a few days. Good luck.