Biologics

I have been on one biologic or another (Enbrel, Humira, Simponi, and now Cimzia) since 2005. The only problem I have had is either local injection site pain, and eventual loss of effect (the reason I move on after time).

I have inflammatory arthritis with just the occasional pouchitis that has not been too bad. I was put on biologics for the arthritis and I have been very happy.

Just recently some pretty serious pouchitis was found. I was already in the process of switching from Simponi to Cimzia when I had my scope. I had been having a lot of abdominal pain, along with pouchitis symptoms. I'm on Flagyl right now for a couple of weeks and hope the Cimzia kicks in soon. If not, my GI advocates adding an immune modulator such as Imuran or methotrexate (already taking sulfasalazine).

To get back to your question, I have more fear of chronic inflammation leading to dysplasia and/or carcinoma than I do about the rare side effects of the biologics. I have my blood counts, liver and kidney function tests every three months like clockwork, and my numbers have only improved over the years. Prior to starting biologics I had mild fatty liver disease and my enzymes are now normal. Self injection was never an issue for me.

I avoid contact with sick people when possible, wash my hands raw, and stay up to date on my vaccines.

I am grateful biologics exist (and they are covered by my insurance)!

Jan

My GI is also saying "old" pouches are coming at him with issues.

I'm on Humira for perianal fistulas and general IBD issues. I'm an ICU nurse, and I do what I can to prevent illnesses, though I just got over a whopper of an URI. But so did my friend who ISN'T on biologics; took her 2 weeks, too, same as me, to recover. So...

I realized as an adult that ALL the years I was on sulfasalazine and prednisone, b/w age 11-19, I was immunosuppressed as much, if not more, than I am now. I increasingly failed tapers and needed more steroids, until my surgery. I'm probably healthier now than I was then, overall. Even on Humira.

My daughter is on Humira for Crohn's colitis and associated arthritis, and hubby is on Humira for psoriatic arthritis, after failing Enbrel.

Life is short. Do what you have to do to live. That's what I say, anymore.

Why don't they start you on xifaxan or pentassa before going to bio's? I have a pretty severe case. I had a bad reaction to Remicade although I did get a 3 year remission on it. This last one I got me into remission using Budesonide, pentassa, augmentum, and Canassa. I weaned off of everything rather quickly and switched to xifaxan as maintance. There r so many other things to try first.

So I'm not sure the biologis are as awful as some think.

Is it better to put your body thru 5-7 meds to get to remission, vs. one?

It's just a thought.

I can only speak of my experiences with biologics when I had a colon and active UC. I had no response from Humira and a couple of others IIRC including Remicade? Regardless, I had no adverse reactions. I had 100% response from Vedilisimab (you guys call it Entyvio). The hospital staff were sort of amazed. I went into complete remission almost immediately, ie. no later than 3 weeks after the first monthly infusion. At that time I was steroid refractory, so nothing was helping the UC. I was on large dose steroids for no benefit. Over the course of the year at least I got of the steroids.

Unfortunately it just stopped working 12 months later hence, and finally, loss of colon and J-Pouch. There were no side effects of the infusions and complete remission was complete remission, fantastic at the time.

Everyone is different, but I would have no hesitation in trying the various biologics if it became necessary again. The only reason I didn't try anything else was there wasn't anything else left to try.