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

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.

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

I really want to know what your reaction will be to ACTEMRA. Please let me know. I still have scalp itching and a little on the breast area. For a moment there I thought I might have mites!!! But saw the Dr yesterday and it is definitely still a reaction to the ACTEMRA..

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

Don't get your hopes up too much because there isn't that much that can be done for a low cortisol level. Except that a low cortisol level seemed to explain why I couldn't taper off Prednisone for 12 years. Otherwise, there isn't that much that can be done.

Artificial intelligence says this:
"Yes, when treating low cortisol levels, a corticosteroid like Prednisone can be used, but hydrocortisone is generally preferred because it most closely mimics the body's natural cortisol hormone, allowing for more precise dosage adjustments and potentially fewer side effects."
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A person who experienced an adrenal crisis explained it to me this way:

"I can appreciate why you have taken prednisone as you have over the years. Prednisone is truly a miracle medication in easing life debilitating inflammation and the ensuing joint and muscle pain. Sometimes it is the only medication that is effective. The benefits derived outweigh the immediate risks. Most likely, you will need to remain on a replacement level of corticosteroid (hydrocortisone is preferred) for life. You will need to take daily medication to provide for the cortisol normally produced by the adrenal glands."
-------------------------------
My endocrinologist didn't have any preference about which corticosteroid I used. She just said, I was lucky when my cortisol level rebounded after I was able to maintain a low dose of prednisone for a long time.

When you study some of the functions that cortisol has in the body, it was "regulating inflammation" that stood out the most to me. My thought was that it was no wonder I had flares whenever my prednisone dose got too low. My body always seemed like it lost its ability to regulate inflammation right around the 7 mg dose of prednisone.

I have no idea if it was a PMR flare or a low cortisol level that caused the out of control inflammation and an inability to taper off Prednisone.

I think PMR inflammation necessitated Prednisone in the beginning.. As time wore on, I think a low cortisol level contributed more to my abnormally high inflammation levels. Maybe a combination of PMR and a low cortisol level ... who knows???
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Does prednisone perpetuate a proinflammatory state??? As ironic as it seems ... perhaps it does.

I didn’t realize that there is cortisone and hydrocortisone? What’s the difference? Will have to mention that to my rheumatologist.

"Hydrocortisone and cortisone are both corticosteroids (often shortened to "steroids"), which are manufactured hormones that suppress the immune system response. Both cortisone and hydrocortisone treat inflammatory autoimmune diseases and other health conditions. They are fast-acting medications, but they act in different ways."
https://www.verywellhealth.com/cortisone-vs-hydrocortisone-5217271#:~:text=The%20medications%20are%20also%20used,to%20produce%20anti%2Dinflammatory%20effects.
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There is a wide range of brand names and generic names for corticosteroids. There are subtle differences but basically all the same. The routes of administration are the biggest differences --- oral --topical-- inhalation--injectable--infusible -other ways to administer but these are the more common ones.

My ophthalmologist once considered an implant of corticosteroid into my eye. A corticosteroid implant in the eye is a long-lasting device that delivers a steroid medication to treat eye conditions.

Systemically administered as opposed to locally administered are said to be worse. Now they say there is no absolutely safe way to administer corticosteroids to avoid all the side effects.

Don't get your hopes up too much because there isn't that much that can be done for a low cortisol level. Except that a low cortisol level seemed to explain why I couldn't taper off Prednisone for 12 years. Otherwise, there isn't that much that can be done.

Artificial intelligence says this:
"Yes, when treating low cortisol levels, a corticosteroid like Prednisone can be used, but hydrocortisone is generally preferred because it most closely mimics the body's natural cortisol hormone, allowing for more precise dosage adjustments and potentially fewer side effects."
-------------------------------
A person who experienced an adrenal crisis explained it to me this way:

"I can appreciate why you have taken prednisone as you have over the years. Prednisone is truly a miracle medication in easing life debilitating inflammation and the ensuing joint and muscle pain. Sometimes it is the only medication that is effective. The benefits derived outweigh the immediate risks. Most likely, you will need to remain on a replacement level of corticosteroid (hydrocortisone is preferred) for life. You will need to take daily medication to provide for the cortisol normally produced by the adrenal glands."
-------------------------------
My endocrinologist didn't have any preference about which corticosteroid I used. She just said, I was lucky when my cortisol level rebounded after I was able to maintain a low dose of prednisone for a long time.

When you study some of the functions that cortisol has in the body, it was "regulating inflammation" that stood out the most to me. My thought was that it was no wonder I had flares whenever my prednisone dose got too low. My body always seemed like it lost its ability to regulate inflammation right around the 7 mg dose of prednisone.

I have no idea if it was a PMR flare or a low cortisol level that caused the out of control inflammation and an inability to taper off Prednisone.

I think PMR inflammation necessitated Prednisone in the beginning.. As time wore on, I think a low cortisol level contributed more to my abnormally high inflammation levels. Maybe a combination of PMR and a low cortisol level ... who knows???
------------------------------
Does prednisone perpetuate a proinflammatory state??? As ironic as it seems ... perhaps it does.