GCA and Actemra

[EA43]

Diagnosed in November. On prednisone and Actemra. Lots of questions

[DorsetLady PMRGCAuk volunteer]

Hi and welcome p

Just fire away when you’re ready. I can answer on GCA and Pred, but not on Actamera.

[EA43 in reply to DorsetLady]

After 2 months of fever, night sweats and 20 lb weight loss I was diagnosed with GCA.started on 60mg prednisone daily then added Actemra in December. I have tapered to 30 mg daily and continue the Actemra. CRP has returned almost to normal. Just hoping to return to feeling normal again. Still not able to sleep much. I am walking between 4 and 5 miles a day to keep up exercise and control blood sugar as I’m also diabetic. Added insulin last week but hope getting the prednisone dosage lower might help.

[PMRpro Ambassador in reply to EA43]

Have you tried cutting carbs drastically? It helps avoid both weight gain and the steroid-induced diabetes problem.

[DorsetLady PMRGCAuk volunteer in reply to EA43]

I found the sleeplessness quite bad at high doses and resorted to take an OTC sleeping tablet (Nytol) every 4th or 5th night, enough to get a good night’s sleep, but not enough to get addicted - on GP’s advice. Returned to normal sleep patterns as Pred dose lowered.

Blood sugars should also reduce as Pred reduces, but as PMRpro says look at your diet.

[EA43 in reply to DorsetLady]

Thanks..I’ll try looking for an OTC for some help with sleeping. I have been trying to work with diet but can’t seem to make it through the day without 1 or 2 spikes. It is getting better as the prednisone dose is getting lower

[PMRpro Ambassador in reply to EA43]

Your Hba1c is more significant than the spikes - you may have shortlived spikes due to the liver randomly releasing glucose but overall the Hba1c may still be within in range. And it will improve as the dose falls.

[PMRpro Ambassador]

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