How does Kevzara help with PMR symptoms and pain? I am being weaned

I am so grateful to find this meeting place. I don't know anyone with PMR and has never heard of it until I was diagnosed 7 months ago. I have been o Prednisone ever since and my rheumatologist is having me taper slowly (current dose is 7 mg). I recently had Covid and after that the second of two upper respiratory infections. I have the sense that I am depleted, that my Qi is being drained by the steroid, even as it helps the pain and I don't even know what to do about the fatigue. Just reading what others are going through and have found effective relieves my sense of anxiety and depression....as in.."will I ever get of Prednisone? Will I ever feel better again?" I am hoping the answer to those questions is YES and I also have gleaned that it's not going to be right away. Thank you all for your wisdom💗

I am so grateful to find this meeting place. I don't know anyone with PMR and has never heard of it until I was diagnosed 7 months ago. I have been o Prednisone ever since and my rheumatologist is having me taper slowly (current dose is 7 mg). I recently had Covid and after that the second of two upper respiratory infections. I have the sense that I am depleted, that my Qi is being drained by the steroid, even as it helps the pain and I don't even know what to do about the fatigue. Just reading what others are going through and have found effective relieves my sense of anxiety and depression....as in.."will I ever get of Prednisone? Will I ever feel better again?" I am hoping the answer to those questions is YES and I also have gleaned that it's not going to be right away. Thank you all for your wisdom💗

Inflammatory disorders like PMR cause fatigue. When you have chronic pain, you are exhausted at the beginning of the day. Pain along with prednisone makes it hard to sleep and you wake up with more pain. Poor sleep causes an increase in inflammation which makes your pain worse and more fatigue follows. It leads to a downward spiral.

Prednisone should energize you when you first start taking it. Prednisone is a glucocorticoid that mimics the action of the body's natural hormone cortisol. Unfortunately, prednisone shuts off the cortisol that the adrenals should produce.

As you slowly decrease your prednisone dose below 7 mg you are gently trying to persuade your adrenals to start producing cortisol again. Sometimes the adrenals balk at resuming normal cortisol production. "Overwhelming fatigue" is a symptom of a low cortisol level.

Will you ever get off prednisone? Will you ever feel better again? The answer depends on how soon PMR goes into remission. After that, it depends on how quickly your adrenals are able to produce enough cortisol so that you can taper off prednisone. It is a two-stage process that can take a couple of years.

In my case, it took me many years. Yes, I do feel much better being off prednisone. I wasn't able to get off prednisone until a biologic was used instead of prednisone to control my symptoms.

Just keep telling yourself YES, things will get better again. Saying NO means you have lost hope and that doesn't do you any good at all.

Thanks for that. I was decreasing my prednisone and was at 7 1/2 mg at the beginning of October. I had a major flare which caused me to go back up to 20 mags of my prednisone. I have been slowly trying to come back down without causing another flare. Right now I’m at 17 and will reduce it again next week.

When your cortisol level is low, the body loses the ability to regulate inflammation. It seems to happen frequently to PMR patients treated with long term prednisone. People with PMR frequently have flares at or near the 7 mg dose of prednisone. I understand why you would increase your prednisone dose. Did you have a flare because your cortisol level was low? It's hard to know the answer to this question.

It seems to me, the biologic I took (Actemra) kept my inflammation regulated and under control while I tapered my prednisone dose lower. A lower prednisone dose allowed my adrenals some time to recover. This gave my adrenals time to start producing cortisol again. When my cortisol level was adequate, I was able to reduce my prednisone dose to zero.

Have you decided to try Kevzara? Maybe Kevzara will work the same as Actemra worked for me.

I took my 3rd dose of kevzara last week. So far I haven’t noticed a difference. From all that I have read it may be 3 months before I feel a difference.

Be patient and hopefully Kevzara works for you.

I didn't really know Actemra was working until I was able to reduce my prednisone dose. I found myself on 3 mg of prednisone and in uncharted waters. However, I wasn't having a flare or any increase in PMR symptoms. I had some pain but it was tolerable but it wasn't like I was "pain free."

I experienced overwhelming fatigue and was miserable but an endocrinologist said I should expect that because my cortisol level was low. Adrenal suppression is a side effect of long term prednisone use. My endocrinologist wanted me to stay on 3 mg of prednisone if I could until my cortisol level increased. My endocrinologist didn't know if my adrenals would produce more cortisol. I took prednisone for more than 12 years so my endocrinologist thought my adrenals might be permanently suppressed.

Slowly my fatigue and symptoms of a low cortisol level started to improve while I stayed on 3 mg of prednisone. It took more than 6 months before my endocrinologist said my cortisol level was adequate and it "might be safe" for me to stop taking prednisone. She added that I shouldn't hesitate to restart prednisone for any reason if I felt the need. She was concerned about an adrenal crisis but fortunately that didn't happen.

When I was on zero prednisone, my rheumatologist said PMR probably wasn't in remission yet but Actemra was controlling my symptoms instead of prednisone. I still take Actemra and my rheumatologist thinks being off prednisone and on Actemra is better for me.

My cortisol level is normal again but I still see an endocrinologist who is treating me for other residual prednisone side effects. Prednisone caused me to have a few hormone imbalances that led to metabolic changes. Actemra doesn't cause adrenal suppression so everything is improving gradually but my endocrinologist says it will take time for everything to improve assuming I can stay off prednisone. I have been off prednisone for 3 years and things are getting better.

You have a very involved endo dr. I’m jealous. I will keep trying to reduce the prednisone again and see how it goes.
I am so thankful for this site and other victims of this disease. When I share with others that I have this I get the blank stare and I totally understand that.
Again thank you.

At first, my endocrinologist said as long as I needed prednisone for my rheumatic disease there was nothing she could do. She apologized and referred me back to my rheumatologist. I don't know what discussions happened between my endocrinologist and rheumtologist but a short time later my rheumatologist asked me if I wanted to try Actemra.

I didn't know anything about Actemra but decided I had nothing to lose. I actually expected Actemra to fail but my rheumatologist convinced me that we wouldn't know unless I was willing to try it. Actemra didn't come with any guarantees

At first, my endocrinologist said as long as I needed prednisone for my rheumatic disease there was nothing she could do. She apologized and referred me back to my rheumatologist. I don't know what discussions happened between my endocrinologist and rheumtologist but a short time later my rheumatologist asked me if I wanted to try Actemra.

I didn't know anything about Actemra but decided I had nothing to lose. I actually expected Actemra to fail but my rheumatologist convinced me that we wouldn't know unless I was willing to try it. Actemra didn't come with any guarantees