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

The itching started exactly one day after I stopped the prednisone. I decided (my Doctor is on vacation!!) on my own to restart 5mg of Prednisone and both the itching and bone aching have improved. There is something about not producing enough CORTISOL? That might have caused that? Just don’t know.

"There is something about not producing enough CORTISOL? That might have caused that? Just don’t know."
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I think that prednisone masks so many things it is hard to know. It could be a low cortisol level or arthritis or flare of PMR or maybe flare of something else entirely ... nobody seems to know. I have never considered an allergic reaction to something before this but that's a possibility too.

"PREDNISONE (PRED ni sone) treats many conditions such as asthma, allergic reactions, arthritis, inflammatory bowel diseases, adrenal, and blood or bone marrow disorders. It works by decreasing inflammation, slowing down an overactive immune system, or replacing cortisol normally made in the body."
https://my.clevelandclinic.org/health/drugs/20469-prednisone-tablets
I just have my doubts that people increase their Prednisone dose all the time for a PMR flare only. I know that I increased my Prednisone dose often enough for things that surely weren't just PMR.

Things just got so complicated. The only thing I know was that I could never get off prednisone until Actemra was tried. Even after Actemra was tried, I had know idea what I was doing.

Doctors can't even diagnose PMR with a high degree of certainty.

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.

Thank you for your response. I got back to 5mg of prednisone 3 days ago and itching is almost gone as well as bone aches. I am supposed to take my ACTEMRA injection 164mg tomorrow. Awaiting a call from the Doctor tomorrow as on how to proceed. I have a great active life and know that at my age 86 I will have both of these conditions for the rest of my life. I had PMR 14 years ago and GCA 7 years ago. I just need to know on how to best manage it so I can maintain my quality of life.

My mother in law got GCA in her 80s. She died two months short of her 100th birthday. The GCA eventually left her. These disorders are supposed to burn themselves out after a while. For some, it takes more time. Take care!

❤️ it. I was just told by my Dr to get off ACTEMRA and go back to my 5mg Prednisone which I actually can handle pretty well. So all is good. The itching I got will disappear in two weeks..I can handle that.

This last go round, my Rheumatologist gave me the option of Acterma, but then decided to keep me on prednisone. I'm taking 9 mg now, tapering by 1 mg every month.

After my experience with ACTERMA I would say stay on the Prednisone. It’s not that high a dose. ACTERMA has only been around since 2012? And I think it’s long enough to establish all the lasting side effects.

I meant to say it’s NOT long enough

Nobody ever knows how a medication might affect them. There is no way to "establish all the lasting effects" from any medication. There are only lists of "possible side effects."

Just because something is listed as a possible side effect doesn't mean everyone will have the side effect.

Just because a side effect is NOT listed as a possible side effect, doesn't mean a person won't have that side effect.