1. < Polymyalgia Rheumatica (PMR)

Does untreated PMR lead to GCA, organ inflammation and osteoporosis

Posted by glinda47 @glinda47, Apr 1 9:34am

About 3 months ago, my thighs seized up with pain, as did my shoulders (esp dominant one that is always bit sore from working out). I thought it was from overuse. The sports med doc I saw was useless. Sent me straight to PT which made things worse. Saw rheum (I have untreated osteoporosis) and she took labs which showed ESR and CRP within normal range. I have an ultrasound scheduled for the end of April. Pretty sure I have PMR. Problem is I am extremely medicine sensitive and do not want to take steroids *or* osteo meds. I'll have to sort that out as time goes on.
1, In researching, I'm trying to get my arms around whether this inflammation from probable PMR can cause issues within the body, including heart and other organs.
2. Does untreated PMR actually *cause* GCA?
3. Also, will PMR alone cause my osteoporosis to get worse? Saw a study about that.
I feel extremely helpless and alone on this one.
If you actually have trusted and reliable info on this, I'd appreciate it. This inconsistency is unnerving

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Teri | @tsc | Apr 3 2:20pm

Hi @glinda47,
The incidence of GCA is 1/3 that of PMR. I read, somewhere, that PMR does not necessarily lead to GCA. I hit the jackpot with both. I had full blown PMR for about nine months, and my inflammation markers were only slightly elevated, not high enough for my doctor at the time to take much notice. By the time I was diagnosed with GCA, nine months later, they were highly elevated.
PMR can be difficult to diagnose and if it's suspected, a doctor may prescribe prednisone to see if it relieves symptoms. If it doesn't, then it's probably not PMR. GCA is easier to diagnose with a temporal artery biopsy.
I can understand your reluctance to take steroids to treat PMR and drugs for osteoporosis. I think there are some alternative drugs to prednisone, but don't know what they are. There have been some discussions of this in the PMR/GCA group. Maybe @johnbishop can guide you to those.
The inflammation of untreated PMR is probably not good for the body. If you have any symptoms of GCA - visual disturbances, trouble chewing, tender scalp, dry cough, headache or headpains, anorexia, don't delay in seeking treatment, which is usally a high dose of prednisone, sometrimes given by IV in an ER, when there is visual disturbance. Blindness or stroke can result from untreated GCA.
Because I had GCA, my rheumatologist prescribed a low dose aspirin daily, as aortic aneurysms may occur in later years.
If you are able to move in your condition, you can try Dr. Loren Fishman's 12 Poses vs. Osteoporosis, on YouTube. These selected poses, under study, improve bone density. When I had PMR, I could barely manage a walk, let alone yoga.
My mother in law also had GCA and was sensitive to drugs. She was reluctant to take Prednisone, but did , after being told she could have a stroke if she didn't. She lived to be nearly 100.
I hope you can get to the bottom of this.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 3 2:48pm

Hello @glinda47, I would like to add my welcome along with @tsc and others. There are other members with PMR who have experience with other treatments for PMR that you might find helpful:

--- Alternative to Prednisone for Treating PMR?: https://connect.mayoclinic.org/discussion/alternative-to-prednisone/
--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/

I know it's difficult to navigate these symptoms and especially when you feel all alone. I'm pretty sure that being alone is not the case and there are others with similar symptoms who will hopefully respond and share what has helped them. The best thing you can do is learn as much as you can about your health conditions and what treatments are available then work with your rheumatologist or care team on a treatment plan.

REPLY
1 reply
glinda47 | @glinda47 | Apr 3 7:07pm
In reply to @johnbishop "Hello @glinda47, I would like to add my welcome along with @tsc and others. There are..." + (show)
@johnbishop

Hello @glinda47, I would like to add my welcome along with @tsc and others. There are other members with PMR who have experience with other treatments for PMR that you might find helpful:

--- Alternative to Prednisone for Treating PMR?: https://connect.mayoclinic.org/discussion/alternative-to-prednisone/
--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/

I know it's difficult to navigate these symptoms and especially when you feel all alone. I'm pretty sure that being alone is not the case and there are others with similar symptoms who will hopefully respond and share what has helped them. The best thing you can do is learn as much as you can about your health conditions and what treatments are available then work with your rheumatologist or care team on a treatment plan.

Jump to this post

John, I appreciate your welcome and all the info. It is a frightening and lonely time for sure, so it truly does feel good not to be alone....not that I'd wish this on my worst enemy!Take care and be well,Gail (Glinda)

REPLY
glinda47 | @glinda47 | Apr 4 10:07am
In reply to @tsc "Hi @glinda47, The incidence of GCA is 1/3 that of PMR. I read, somewhere, that PMR..." + (show)
@tsc

Hi @glinda47,
The incidence of GCA is 1/3 that of PMR. I read, somewhere, that PMR does not necessarily lead to GCA. I hit the jackpot with both. I had full blown PMR for about nine months, and my inflammation markers were only slightly elevated, not high enough for my doctor at the time to take much notice. By the time I was diagnosed with GCA, nine months later, they were highly elevated.
PMR can be difficult to diagnose and if it's suspected, a doctor may prescribe prednisone to see if it relieves symptoms. If it doesn't, then it's probably not PMR. GCA is easier to diagnose with a temporal artery biopsy.
I can understand your reluctance to take steroids to treat PMR and drugs for osteoporosis. I think there are some alternative drugs to prednisone, but don't know what they are. There have been some discussions of this in the PMR/GCA group. Maybe @johnbishop can guide you to those.
The inflammation of untreated PMR is probably not good for the body. If you have any symptoms of GCA - visual disturbances, trouble chewing, tender scalp, dry cough, headache or headpains, anorexia, don't delay in seeking treatment, which is usally a high dose of prednisone, sometrimes given by IV in an ER, when there is visual disturbance. Blindness or stroke can result from untreated GCA.
Because I had GCA, my rheumatologist prescribed a low dose aspirin daily, as aortic aneurysms may occur in later years.
If you are able to move in your condition, you can try Dr. Loren Fishman's 12 Poses vs. Osteoporosis, on YouTube. These selected poses, under study, improve bone density. When I had PMR, I could barely manage a walk, let alone yoga.
My mother in law also had GCA and was sensitive to drugs. She was reluctant to take Prednisone, but did , after being told she could have a stroke if she didn't. She lived to be nearly 100.
I hope you can get to the bottom of this.

Jump to this post

Thanks for sharing your story, TSC. You've been through a lot. Thankfully you have persevered!
How did you respond to all that pred they gave you in the hospital? Or do they put feel good drugs in the IV. I'd have to have massive valium or be knocked out.
At any rate, appreciate you sharing your story with me. Do stay well!!

REPLY
1 reply
Teri | @tsc | Apr 4 5:13pm
In reply to @glinda47 "Thanks for sharing your story, TSC. You've been through a lot. Thankfully you have persevered! How..." + (show)
@glinda47

Thanks for sharing your story, TSC. You've been through a lot. Thankfully you have persevered!
How did you respond to all that pred they gave you in the hospital? Or do they put feel good drugs in the IV. I'd have to have massive valium or be knocked out.
At any rate, appreciate you sharing your story with me. Do stay well!!

Jump to this post

HI @glinda47, I was fortunate not to wind up in the ER with Prednisone IV. I was put on an oral dosage of prednisone 40 mg when diagnosed with GCA, then tapered down by 5mg every two weeks.
I took prednisone for about 16 months. I've been off it nearly as long.
The high dosage of prednisone gave me a lot of energy, made me very talkative and restored my appetite. It also gave me insomnia, but it did make my GCA symptoms go away.

REPLY
1 reply
glinda47 | @glinda47 | Apr 4 11:04pm
In reply to @tsc "HI @glinda47, I was fortunate not to wind up in the ER with Prednisone IV. I..." + (show)
@tsc

HI @glinda47, I was fortunate not to wind up in the ER with Prednisone IV. I was put on an oral dosage of prednisone 40 mg when diagnosed with GCA, then tapered down by 5mg every two weeks.
I took prednisone for about 16 months. I've been off it nearly as long.
The high dosage of prednisone gave me a lot of energy, made me very talkative and restored my appetite. It also gave me insomnia, but it did make my GCA symptoms go away.

Jump to this post

You are one strong woman! So glad you're doing well now. Thanks for responding.

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