We most often read about the problems. I'm wondering about successes as I'm concerned about taking biologics to manage one thing, and feeling lousy from side effects. Any successes, with which biologic and how long have you been taking it?
I was taking remicade 20 years ago. Or close to there.
It worked perfectly For several years. I felt normal. Until I was taken off of it for hernia surgery. No biologic ever worked after that. Not even remicade. That started me on a long painful journey.
But my first infusion made a difference. I could tell. And I said so but none of the people believed me. I was so sick when I started it. At he end of my two plus hour infusion I felt something. It was a good something and soon after that I had the best bowel movement I have had in a decade. I was right. I hate that I was taken off of it for surgery. Because while being treated for being sick again well after the hernia surgery one surgeon said I didn't have to be taken off it to have the surgery. Now. I have no colon. But also no hard feelings to what had happened. But I will vouch for remicade. I tried Humira afterwards and one other biologic. But neither worked again like the remicade. Which never worked again either.
Ahh. Such is life. Good luck. Hope you find something.
I do know from the remicade experience that if you don't get results after a few infusions it's not working. My opinion. Mine only. Never had one side effect from any biologic.
I have been on one biologic or another since 2005. No side effects or issues, other than a loss of effectiveness over time. I am currently on Inflectra (biosimilar of Remicade). Since starting Remicade about 3-4 years ago, my chronic pouchitis is under control and my arthritis is manageable.
So, yeah, I would say it is a success for me. The primary downside is the hassle of frequent blood tests and having infusions every 6 weeks. I just have to plan my travels around it.
I have been on Remicade since 2015. No side effects at all, no loss of effectiveness. I managed to reduce my antibiotic dosages substantially although not completely while on Remicade.
I'm interested in this topic, as my rheumatologist is applying for me (as I'm in the UK) to be put on certolizumab pegol (Cimzia). I don't meet the requirements of having 5 swollen joints at a time, as I only have it in 1... but as I'm in my 30s and am a teacher, she is hoping they will approve it, as I can't work. My knees keep becoming swollen, and after draining about 50ml and a steroid injection, I get 2 weeks relief and then can't walk again. I was diagnosed with cuffitis last year from an endoscopy, and think that is back too (not sure when it is a fissure, and when it is cuffitis, as I get both!). My CRP is 99, so I guess the inflammation is going to be in various places at once! At the moment, I also have a very fast pulse, finding it harder to breathe, night sweats etc, and my GP is putting it down to the inflammation.
My rheumatologist said there isn't a given pathway for enteropathic arthritis treatment. I am currently on sulfasalazine and can't try methotrexate as still want to get pregnant (I think the inflammation is making that tricky, as has been 2 and half years so far and no ovulation... plus after 2 rounds of failed IVF we were told not to try it again, as I don't respond to the drugs! So if I can find something that works to dampen the inflammation, it might help this too.)
I was wondering if anyone has tried Cimzia for UC/related arthritis, as it seems like it is more for CD. Or if anyone has ideas of other biologics that might work well.
Humira for 10 years. No side effects that I can tell
Been on Remicade for 1.5 months and the ulcers in my terminal ileum and in the cuff of the pouch have stopped bleeding!
Ive been on humira since October last year - working well for the arthritis, but I also now have chronic sinus issues - which can occur (although in low frequencies) when on ant TNF meds.
Humira for 2 1/2 years. Feel great and no side effects.
I was on Cimzia for a couple of years for enteropathic arthritis. In the US, the criteria is only failure of other treatments. But, you probably do need axial involvement (spinal- including sacroiliac) for biologic treatment criteria. Cimzia was OK for my arthritis, but my cuffitis/pouchitis became chronic while on it. That was when I was switched to Remicade by my GI. It was given with the addition of azathioprine (Imuran). My arthritis is not in full remission, but my pouchitis is.
Here is a link with medication options for spondyloarthrapathies (which include enteropathic arthritis). https://www.spondylitis.org/Medications
Thank you Jan for your reply. It was really helpful to read! The hospital pharmacy phoned yesterday to say that it has been approved and they will be delivered in a couple of weeks. So fingers crossed...!
When I had UC, biologics were a lifesaver! The only problem was the wait (because I had no insurance for Entyvio and you need insurance for the plan) and I accidentally became allergic to humira and remicade. If I didn't have those allergies, they would've been my lifesavers. I loved them . They made my gut feel normal.