PMR - What do you wish you had known . . .

@tweetypie13 Thanks for this. It seems that when I cut down it was the PMR coming back (classic back of arm pain, heaviness in legs, etc.) But truly, I'm not sure if that's the cortisol issues too.
I guess that's my next question: How do you handle the reawakening of the adrenals? Is it just live with it for a bit? Or does the slow or alternating tapering help?

This plays nicely into the topic, unfortunately.
Who knew that what would make me "feel good" was actually bad, and would then stick me with another problem—that is, the questionable hormonal imbalance.

Super helpful though. Just not sure how to look forward to all of this. My hope is that the Kevzara covers the PMR symptoms and that smart tapering will reactivate my adrenals. Am I being too optimistic? Naïve?

@grownupcf

I wasn't very optimistic about Actemra because of all the negative feedback I received from another PMR forum. I tapered by 1 mg per week just so I would get the "inevitable flare" over with and I could move on. My lack of optimism probably hindered me from getting off prednisone sooner. I was convinced that taking Prednisone for the rest of my life was probably my best option.

I was pessimistic even when the endocrinologist told me 3 mg was a low dose that I could simply stop taking Prednisone as long as PMR was controlled AND my cortisol level was within the normal range. It wasn't optimism so much as it was a huge leap of faith that I would not have an adrenal crisis.

It was my nature to be too pessimistic when I needed to be more optimistic. Long term prednisone use and chronic pain made me pessimistic. I was naive to think that prednisone wasn't causing me to have some serious health consequences. Then someone addressed this issue with me after she woke up out of a coma after a bowel perforation with a subsequent adrenal crisis from her long term prednisone use.

The person I'm referring to died but she lived long enough to change everything about how I felt about Prednisone. I wish I had known that person too when I was first diagnosed with PMR. She would have been happy that I got off Prednisone when someone else was telling me to take Prednisone for the rest of my life.
https://www.healingwell.com/community/default.aspx

@dadcue Thank you. And I'm sorry for the loss of your friend. Thankfully she left you with an important message.
I think both of my doctors are more aggressive on getting off prednisone, and after some time, I realized I needed to be as well. So jumped on the chance to take Kevzara. My optimism (and my partner's) was that it would work, and the prednisone would be gone, and we'd live happily ever after.

That could be the case. I just need to give it some time. I'm impatient. I lived with PMR for way too long before I got treatment and was hoping it would "go away in 2 years," which is what a doctor told a friend who has it. He is older and in a much different health space than I, but it was what I preferred to hear (and actually some of the first things I read without digging into the details).

Then my doctor enlightened me. As did this group. Grateful. ☺️

@dadcue Thank you. And I'm sorry for the loss of your friend. Thankfully she left you with an important message.
I think both of my doctors are more aggressive on getting off prednisone, and after some time, I realized I needed to be as well. So jumped on the chance to take Kevzara. My optimism (and my partner's) was that it would work, and the prednisone would be gone, and we'd live happily ever after.

That could be the case. I just need to give it some time. I'm impatient. I lived with PMR for way too long before I got treatment and was hoping it would "go away in 2 years," which is what a doctor told a friend who has it. He is older and in a much different health space than I, but it was what I preferred to hear (and actually some of the first things I read without digging into the details).

Then my doctor enlightened me. As did this group. Grateful. ☺️

@pmrsuzie I hear you…..I’ve been lucky, no other meds or health issues. My Dr neglected to tell me that by going on Kevzara it would help me got off of prednisone. I was most successful at tapering off prednisone with in the first 2.5 months I was on Kevzara. No side effects.
Good luck

@grownupcf
An additional thought…..my Dr recommended Tylenol for ARTHRITIS as a supplement to the prednisone. So instead of taking more prednisone, I pop 1 or 2 Ty For Arth…can take up to 6 per day.
Now on Kevzara I take TY for A when weather affects it, or heading for a very active day (big hike etc,). I take only 1 pill as prevention 😄
HVE been off Pred for 11months.

@tweetypie13 that's awesome. I have started taking Kevzara but can't afford to keep taking after 3 months. And what's the trade? Just one drug for another. There is no winning with this

@tweetypie13 Question for those on Kevzara. Who brought up the subject on taking it first, you or your doctor? Was it due to tapering issues or other health complications requiring you to get off prednisone? Just curious. Thanks.

@pawprintpeg

"Why and how might accumulated stress trigger an autoimmune response?"
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I don't think stress causes an autoimmune response directly. I think chronic stress impacts the delicate balance of the immune system because of the production of cortisol which is called the stress hormone.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11546738/
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I'm going to turn it over to artificial intelligence to explain what stress does:

"The Cortisol Shift:
In response to chronic stress, the brain's Hypothalamic-Pituitary-Adrenal (HPA) Axis continuously stimulates the adrenal glands to produce cortisol.

Receptor Desensitization:
Under short-term stress, cortisol helps suppress inflammation. However, prolonged exposure causes immune cells to become resistant to cortisol's anti-inflammatory signals, leading to glucocorticoid receptor impairment.

Immune Dysregulation:
This resistance means cortisol can no longer properly regulate the immune system. Consequently, cytokines—proteins that mediate immune responses—become imbalanced, promoting systemic inflammation and reducing the body's ability to tell the difference between "self" and "non-self".
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From my personal experience I think genetics and an infection were causal factors for my first autoimmune condition. It was called "reactive arthritis" which derives its name from a reaction to an infection in genetically predisposed people.
https://www.ncbi.nlm.nih.gov/books/NBK499831/
Reactive arthritis is plagued by the same diagnostic problems and treatment difficulties as PMR/GCA.
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There are other various reasons that have been hypothesized for why the body might lose the ability to differentiate between "self" and "non self." There are only theories so nobody knows for sure.

The way that Prednisone further disrupts the delicate balance of the HPA axis and the immune system ability to regulate systemic inflammation makes me think that prednisone isn't the best solution to the problem of autoimmunity. My body didn't "reset itself" until I was able to wean myself off Prednisone.