Has anyone had bowel problems while on Actemra infusions?

Posted by jmwm @jmwm, Aug 2 10:17am

I have been on Actemra for a little over a year and recently developed IBS symptoms. After doing some research I’ve come to the conclusion that it might be the infusions that are causing this. It appears to be connected with the liver. I have another year to go before my rheumatologist takes me off the infusions. I’m thinking I would rather deal with these symptoms than go blind. I have GCA.

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jabrown0407 | @jabrown0407 | Aug 2 11:48am

You need to let your doctor know about your IBS symptoms ASAP. I was on Tyenne, bio-similiar to Actemra, and managed to have a mild case of diverticulitis while on it. It is a known serious side effect, and can cause death if not properly managed. There are other steroid sparing drugs that they might use. Actemra is just one, not the only drug.

jabrown0407 | @jabrown0407 | Aug 3 4:21am

Additionally, it is not a given that you will be able to get off your steroid sparing drug. It depends on your body going into remission. Steroids are anti-inflammatory drugs. Actemra is an IL-6 inhibitor. IL-6 is a type of inflammation that is a big player in PMR and GCA inflammation. It replaces steroids to help manage your inflammation.

cathie1 | @cathie1 | Aug 3 11:55am

I have a significant history of diverticulitis.One episode with abscess which required hospitalization for Intravenous therapy.As a result I hesitated to start Actemra infusions as it is listed as having diverticulitis as a side effect.I had a significant episode of Diverticulitis with my first infusion which responded well to antibiotics.Did not require hospitalization.I have since had about fifteen Actemra infusions and have not had even one episode of diverticulitis during that time.Which is surprising as I always had at least two episodes a year. No changes in my diet which would explain this.Also I do think the GCA responded well to the Actemra treatment.

hi5rockymountain | @hi5rockymountain | Aug 6 6:25am

Have bowel problems which I never associated with Actemra. Finished it June of this year. Due for Reclast infusion in a couple weeks and wonder if anyone has side effects from that. Does Actemra affect the liver?

bubbiebirder | @bubbiebirder | Aug 7 11:21am

I have PMR but not GCA, have been on generics for tocilizumab (Actemra) - Kaiser was covering Tyenne and now just switched to Avtozma, so in one brand or another I've been on tocilizumab injections every two weeks for a little over 3 months. I have noticed more loose bowel movements/diarrhea, usually a about a week after the shot, and no other side effects. Tocilizumab can cause liver damage, but so far so good (no symptoms and blood tests good). I was a light drinker before (maybe 2-3 drinks a month), now down to 0-1 just in case.
Every case is different (different bodies and different access to treatment).
I was only on prednisone for 2 months before rheumatologist started me on tocilizumab, and was able to taper off n prednisone pretty quickly (went to 0 in mid-July). Both my acupuncturist and my PT tell me that this is an unusually smooth course, so expecting a flare up could happen. I've been a little stiffer this week in hips, but found increasing exercise helped. Really hoping I don't have to go back to prednisone.