First, thank you all for being there, and being so knowledgeable and helpful.
I’ve been on Actemra for about 6 months, am still on 17.5 prednisolone and have had to increase to 20 or 25 several times for flares, stress etc, so it doesn’t seem to be helping to save the steroids. In the last 3 months I’ve had several infections and two episodes of diverticulitis out of the blue. And generally have not been feeling well (as well as possible, that is, underneath the PMR). Recently read that diverticulitis can be a side effect of Actemra - and am wondering about continuing with it. My Rheumy isn’t available at the moment. What experience do other people have?
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Japsquar
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Actemra doesn’t work for everyone. PMRPro explains the science of why not. I did manage to reduce from 40 mgs Pred to 10 mgs in a few weeks on Actemra. I stopped it because of abdominal pain. I now have diverticulosis that flares up at the slightest provocation, I was diagnosed following two Colonoscopies an Endoscopy and a camera endoscopy. Nothing else was found. The pain can be pretty nasty, unusually on the right lower abdomen. I also seemed to get infections a lot.
It doesn’t seem to be working for you, with medical advice, I would be inclined to give it up. I was able to stop it after a year without any form of tapering. Unfortunately the diverticulitis remains, treated with Buscopan and Lansoprazole. It didn’t help me to reduce any further than the 10 mgs, and I am kind of stuck between 5/6 mgs of Pred now.
That’s very helpful. So sorry you continue to have diverticulitis, not fun, the pain as you say is nasty. Mine mostly left side but also seems to flare up into the lower back. What with infections as well, it doesn’t seem a good option for me. Pity after my Rheumy worked hard to get it for me! Are you just taking the pred now and did you get to 5/6 by careful tapering?
I know, I had such high hopes for it too. I continued for too long. Yes I got to 5/6 with tapering half a mg every few weeks. I am feeling better after seeing family for a few weeks in Australia. The sun has done me a lot of good and all the love and hugs. I will continue to taper when I am over the flights, I fly back next Sunday. Good luck! Pred is also harsh on the GI system, so it may be keeping it going ( hence the Lansoprazole).
Stock up well on the sun and hugs! Wishing you a smooth flight and happy tapering. Which for some reason reminds me of ‘The Esso sign means happy motoring’, 🙄 won’t be able to get that out of my head!
There are at least 3 different underlying mechanisms for the inflammation in GCA and Actemra only works for one of them and if the others are involved then you still need some pred. Actemra also doesn't work instantly - though some doctors seem to think it does -maybe you have tried to reduce too soon.
If your diverticulitis is a problem - you need to discuss it with your doctor.
Thank you, I’ve been on it 6 months now and the reduction was very gradual, so not optimistic. GP diagnosed diverticulitis and recommended diet - which worked - but maybe I need to ask about the recurrence
Yes, like so much else with this condition! My ear is telling me to stop but Rheumy isn’t available for discussion until the end of February., I’ll just go by ear as you say
Yikes, that can’t have been fun. Don’t know anything about Leflunomide, maybe that’s the next adventure! I’d be delighted to get down to 10mg from 17.5. I do email but it’s always picked up by the nurses. Rheumy is ring fenced! To be fair they do pass on to her but have to wait for her response, in this case 6 weeks, so not ideal!
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