Precursor symptoms to PMR?

Before I started treatment for GCA (prednisone and Actemra), I always had major side effects from the Pfizer Covid boosters: fever, body aches, insomnia, etc. I found I could avoid the side effects by taking acetaminophen before they started. I got a Covid booster recently, after starting prednisone and Actemra, and my immune system didn't seem to react at all. There were no side effects. It made me wonder about the effectiveness of that booster.

Has Actemra helped you taper off Prednisone? Getting off Prednisone after Actemra was started has made a world of difference for me. At least my adrenals aren't suppressed any longer. I think having normal cortisol levels to regulate inflammation has been beneficial. I don't really know what Actemra is doing but it doesn't seem to cause me any harm.

My inflammation markers increase whenever I go too long between Actemra infusions. I was off Actemra during the Covid era when there were supply chain problems. I have severe spinal stenosis and a synovial cyst formed on my lumbar spine and surgery was being planned. A lumbar fusion was "pending" until the synovial cyst formed. The surgeon said the synovial cyst was taking up the limited space I have left in my spinal canal and space for the exiting nerve roots, I resorted to Prednisone again for the pain until Actemra supplies improved.

The spine surgeon said surgery couldn't wait any longer and pain wasn't the issue anymore implying that paralysis might be next. I agreed to surgery but I wanted to wait a few more months. In the interim, Actemra was restarted when supplies improved. When it was time to do the preparations for surgery, another MRI was done. The MRI result was surprising because the synovial cyst was gone. Synovial cysts form in the presence of inflammation but sometimes are reabsorbed. The surgeon said surgery was still needed but I could wait awhile longer. The surgeon speculated that Actemra might have stopped the inflammation around my lumbar spine and the synovial cyst was reabsorbed.

I don't know how often reabsorption of synovial cysts on the lumbar spine happens but the following link says it is rare.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8149034/

Actemra is helping me to taper off of prednisone at a faster rate. I started Actemra when I was taking 50 mg per day of prednisone, and I'll be going to 10 mg / day in just a few days. I take weekly injections of Actemra. I don't know yet what my rheumatologist has planned for the final 10 mg. I'll find out in 3 weeks at my next appointment. So far the taper has gone well. I haven't had any symptoms of a flare.

That's interesting about your synovial cyst healing back up.

I just did a quick google about what Actemra does, and the AI response had this information:

"Actemra (tocilizumab) is a medication that specifically blocks interleukin-6 (IL-6) by acting as an IL-6 receptor antagonist, preventing IL-6 from activating the immune system and causing inflammation; essentially, it blocks IL-6 from connecting to cells in the body.

Key points about Actemra and IL-6:
Mechanism of action:
Actemra binds to the IL-6 receptor, preventing IL-6 from signaling to cells and triggering inflammatory responses.

Treatment applications:
Due to its ability to block IL-6, Actemra is used to treat conditions where excessive inflammation is driven by high levels of IL-6, such as rheumatoid arthritis, giant cell arteritis, and systemic juvenile idiopathic arthritis. "

In the PMRGCAuk support group, they frequently say that there are 3 primary types of inflamation that can affect PMR and GCA, and depending on each person's mix of these 3 types determines if they can get off prednisone by taking Actemra.

"Actemra is helping me to taper off of prednisone at a faster rate. I started Actemra when I was taking 50 mg per day of prednisone, and I'll be going to 10 mg / day in just a few days."

This is a good sign. I hope you can continue to taper off faster. I started out at approximately 50 mg of prednisone and coundn't get anywhere near 10 mg for the next 10 years. After 12 years, I barely managed to stay on 10 mg which was when my rheumatologist wanted to give Actemra a try. Actemra allowed me to quickly taper to 3 mg but I needed to stay on 3 mg for more than 6 months. I didn't have a flare but my cortisol level was too low for me to taper any lower. Fortunately, my cortisol level improved and I was able to go to zero in just a few days.

An endocrinologist said that 3 mg was such a low prednisone dose that there was no need to taper "as long as my cortisol level was adequate." I could just stop taking prednisone if I wanted to but if I "felt the need" I should restart Prednisone again.

I was afraid to simply stop taking prednisone because I took it daily for the better part of 13 years. I did a fast taper from 3 mg to zero in just a few days.

Depending on how long you have taken prednisone, be aware of symptoms of adrenal insufficiency. I persevered when the PMRGCAuk support group experts were saying prednisone at 5 mg or less was safe to take for the rest of my life. My rhematologist said 3 mg or less might be okay but my endocrinologist said I should try to get off prednisone if I could.

I hope Actemra continues to work for you. My rheumatologist now thinks I'm much better being off prednisone than I ever was when I took prednisone. Apparently, my IL-6 level was my only problem. In any case, I have now been off prednisone for 3 years as long as I stay on Actemra. My rheumatolgist doesn't have any plan to stop Actemra anytime soon.

"Once I started prednisone for the GCA and PMR, the knee problem disappeared almost immediately."

This problem might resurface when your prednisone dose gets lower again.

I've gone from 50 mg prednisone down to 10 in about 5 months. I started feeling significantly better once I got down to about 20 mg and below - better quality sleep, better energy, etc. I'm feeling really good at 12.5.

I am aware of the risks and problems associated with adrenal insufficiency from reading posts on the various support groups. It sounds like it can be very difficult for some people, and that some people's adrenals never wake up again and they have to stay on prednisone the rest of their lives. I expect to find out what happens in my case over the next few months.

Maybe, but it was a strange injury that never made sense, since I wasn't doing anything unusual or different from my normal routine. That was my right knee. I also had significant issues with my left shoulder. I couldn't raise that arm higher than shoulder height, and I couldn't move that arm in certain ways, such as behind my back. Certain movements were extremely painful. In retrospect I felt like both of those problems were PMR-related.

My right knee pain made sense to me. I had 3 knee surgeries before I was 25 years old. It was an old sports injury. By the time I was 25 years they said I needed a knee replacement except I needed to wait until I was 60 years old to have a knee replacement. Knee surgery wasn't as good in the 1970's as it is now. My right knee was seriously deranged and had advanced arthritis. My right knee hurt my entire life after it was initially injured when I was 15 years old.

What didn't make sense was my left knee was my "good knee." When I had knee replacements I was still on a moderately high dose of Prednisone. The surgeon said both knees were bad and after both surgeries the surgeon said my left knee was worse and more deranged than my right knee. I have never injured my left knee and never had surgery on my left knee before it was replaced.

When I had knee replacements done there were many precautions taken. I was introduced to an endocrinologist who watched me like a hawk along with an entourage of residents and med students. I think that I disappointed them because I didn't have an adrenal crisis. I mostly remember hydrocortisone being infused continuously.

"Stress-dose glucocorticoid administration is required during the perioperative period because of the possibility of failure of cortisol secretion to cope with the increased cortisol requirement due to surgical stress, adrenal insufficiency, hemodynamic instability, and the possibility of adrenal crisis."
https://pmc.ncbi.nlm.nih.gov/articles/PMC7861897/#:~:text=Stress%2Ddose%20glucocorticoid%20administration%20is,the%20possibility%20of%20adrenal%20crisis.

Def with PMR, which is much better in my legs now since summer, (thank the Universe), I will NOT take the senior flu shot. I have not gotten a covid booster since last Nov and did not get a flu shot last year or this year. I am really afraid to start a flare. No more senior flu shots. I also had only 1 of the 2 pneumonia shots and have to hope that it does offer some protection..I have read that it does.
I hear you.

I hope you don't mind my response to your question. I had symptoms of GCA for a few months without knowing what they meant. I had a low grade fever that slowly increased in duration from a few hours per day to most of the day. I also had night sweats, pain in my cheekbones and around my ears, and a lot of fatigue in my jaw muscles when I was chewing. I finally went to the emergency room when I lost the vision in one eye for a few seconds. It was like looking at a blank gray wall. My vision "glitched" several more times while I was at the hospital. Those episodes were like looking at an impressionist painting where some colors disappeared and others became more dominant. After running a lot of tests, the emergency room doctor diagnosed GCA. I was admitted to the hospital for 3 days to receive daily infusions of high dose steroids. That saved my vision. In the 6 months since I've been taking prednisone and Actemra, and haven't had any more symptoms of GCA or PMR.