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I am on ACTEMRA for my giant Cell Arteritis but it seems like my PMR ?

Polymyalgia Rheumatica (PMR) | Last Active: Nov 20 12:45pm | Replies (38)
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@jenbillig

I have both PMR and Giant Cell Arteritis. Have been on Prednisone for 3 years and switched 3 months ago to ACTEMRA while still taking low doses if prednisone and slowly weaning myself off the Prednisone. Last Monday was my first day without any prednisone and I started a severe scalp and body bitch and severe knees, legs and shoulders bone pains. Yesterday I once again took 5 mg of Prednisone and things seem to slowly improve?? Am truly puzzled and disappointed.

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Replies to "I have both PMR and Giant Cell Arteritis. Have been on Prednisone for 3 years and..."
DadCue | @dadcue | Oct 5 11:05am

Did the itching begin after prednisone was stopped? I’m beginning to think it is a prednisone withdrawal symptom unless the itching started soon after Actemra was started.

I suppose prednisone could mask an allergic reaction to Actemra … hard to know.

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Teri | @tsc | Oct 6 1:18pm

Hi @jenb I have both PMR and GCA. Before I was diagnosed I had severe itching on my torso for weeks. It is a symptom of inflammation. Probably, your body wasn't ready to totally discontinue Prednisone, even with the Acterma, but you should talk to your doctor about what happened if you haven't already, and get a new schedule for tapering prednisone.
GCA/PMR is a stubborn disorder that can linger. I took Prednisone for a year and a half, was off it a year , then relapsed. I'm back on Prednisone now.
We just have to ride this out.
I hope you feel better soon.

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karo89135 | @karo89135 | Nov 20 10:01am

Hi Jen, it is a bitch too, haha.
I’m possibly starting the Actemra and will be aware. I had the major scalp itching and flare after Reclast, then the hand pains. I have symptoms of GCA and hope Actemra helps decrease inflammation. I also have an endocrinologist and thanks to Dadcue, I will look into low cortisol. It’s been 8 years of this fiasco.
Thank you for your comment.
Karo89135

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