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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)Comment receiving replies
Anybody dealing with Pred tapering w/ both PMR & GCA? Am tapering down while also on Actmera (since July). Have had two GCA flares which required re-upping pred for a while. Still have scalp sensitivity and some jaw pain which seems to be increasing while tapering. (No PMR flares.) Am currently at 15mg, down from a max of 40 in May.
These symptoms are also associated with Pred withdrawal and/or Actemra…so hard to know. Docs tend to be dismissive about “head pains” anyhow—but if you guess wrong there is a high risk of optic nerve damage! Finding the right balance is the challenge, as no one wants to re-up Pred
Replies to "Anybody dealing with Pred tapering w/ both PMR & GCA? Am tapering down while also on..."
Hi i am currently having troubles. I to have pmr and gca. Started actemra infusions in oct. Was on 60 mg and got down to 10mg in april but struggled in the second week of that. Now have tingling in my head and face. Dr put me back up to 20mg, didnt work then up to 30mg didnt work and now I'm back up to 60mg right back to where i started. Still have symptoms even though I've been on this for a couple days. I am beside myself. I've been on Prednisone since last may 2022 when initial diagnosis was pmr, i didnt get gca until sept. So I'm worse off a year later. I'm not sure what happened but it seems like both the Prednisone and actemra stopped working. Now what do i do. I'm trying an anti inflammatory diet, just started drinking kefir (probiotics) as i heard that would help with inflammation and doctor said it was okay. Maybe something else is wrong but not sure. Things were going so well.
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Hello @pmm2001, Welcome to Connect. You will notice that we moved your post into an existing discussion on the same topic here:
-- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica):
https://connect.mayoclinic.org/discussion/temporal-arteritis-1/
You mentioned the scalp sensitivity and jaw pain seem to be increasing while tapering.
@tsc and others with GCA experience may have experience to share with you.
Both my primary care and rheumatologist were always asking me if I had scalp tenderness or pain in the temple area along with other symptoms due to the risk of GCA and the importance of addressing the symptoms. Has your doctor been dismissive about your scalp and jaw pain symptoms? If so, I would press to see a specialist or rheumatologist.