1. < Polymyalgia Rheumatica (PMR)

PMR Anyone?

Posted by olegraymare @olegraymare, Jan 4, 2018

I was diagnosed with polymyalgia rheumatica about a year ago. I WAS a very active 69 year old female all of a sudden, not being able to get out of bed on her own and having severe hip flexor pain. As is customary, after waiting 3 months to see a rheumatoid arthritis doctor, she administered the C-reactive protein test and I was VERY high. So, she diagnosed me with PMR and prescribed 15 mg of prednisone. I don't like taking meds (as most of us don't), but I was in pain and had no quality of life. I'm a swimmer and could hardly dog paddle ! One year later, I have been weaning off the 15 mg down to 1 mg. My RA said that now it's a matter of determining if I have PMR or arthritis ... so, she prescribed 7.5 mg of meloxicam for a month. I will say my shoulder pain seems better, but my hip flexors are awful !! I don't want to go back on steroids - the devil drug. I would like to get to the "crux" of what is CAUSING my inflammation??? No doctors seem to address that? What would be my next step? A nutritionist? I am leary of taking supplements, as well. Thank you for any help or sharing your experience. Weird disease ... I just want my old life back - being able to move without pain, etc. Too much to ask?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Oct 24, 2019
In reply to @becsbuddy "@rachelp You sound so determined! You might try to find the book “The Autoimmune Epidemic.” I..." + (show)
@becsbuddy

@rachelp You sound so determined! You might try to find the book “The Autoimmune Epidemic.” I forget the author, but it’s very good

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@becsbuddy and @rachelp I think the author is the same one that did this YouTube video.

The auto-immune epidemic: Author: Donna Jackson Nakazawa

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 24, 2019
In reply to @johnbishop "@becsbuddy and @rachelp I think the author is the same one that did this YouTube video...." + (show)
@johnbishop

@becsbuddy and @rachelp I think the author is the same one that did this YouTube video.

The auto-immune epidemic: Author: Donna Jackson Nakazawa

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@johnbishop thank you!

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Ethan McConkey, Moderator | @ethanmcconkey | Dec 18, 2019

Hi everyone,

It’s time to open a new group dedicated to Polymyalgia Rheumatica (PMR).

All discussions related to PMR can now be found in the PMR group here: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

+Follow the Polymyalgia Rheumatica group and continue to connect with others and share your experiences, ask questions and encourage each other.

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ltta | @ltta | Jan 22, 2020
In reply to @terre "I was diagnosed in January. It is now October. So many doctors and no one agrees...." + (show)
@terre

I was diagnosed in January. It is now October.
So many doctors and no one agrees. My rheumatologist said I do not have GCI ( a secondary problem for many with PMR) Therefore, I chose to stop taking the steroids after 2 1/2 months. I had gained 10 pounds and was still in pain.
I began at the gym with 2 days a week on the bike, then three days a week, moved on to mild Zumba class and light weights. I am still focused on keeping active to fight this disease. I’ve given up caffeine and have gone to very little gluten, sugars and alcohol. If my neck and shoulder pain flares I take Tylenol and use a heating pad for relief. It is now October and I choose to never give up. I am only 56. I have raised the issue to all my doctors that I believe PMR is a result of the shingles vaccine. No comment or real discussion from them!! I was advised by a nurse who felt badly for me, my pain and my situation to go on to the Merck website. The single dose shingles shot Zostavax is no longer offered. It’s now a new company and given in multiple doses.
When I got the vaccine at Walgreens the only side effect I was informed about was on site redness and swelling. If you go onto the Merck website, the side effect of PMR is still listed !!!! I am certain that no one would willingly take the shot if this information would have been revealed.
There are thousands of people now with PMR and doctors cannot seem to figure out how “so many” have such a “rare” disease.

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I believe you! My mother's, my sister's, and my PMR was caused by the flu vaccine!

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 23, 2020

Hello @olegraymare, I haven't seen a post from you in awhile and thought I would check to see how you are doing with your PMR. Were you able to taper off of prednisone?

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charlie333 | @charlie333 | May 16, 2020

I have a question about PMR and elevated liver enzymes. Has anyone heard that liver function tests can be elevated when you have PMR?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 16, 2020
In reply to @charlie333 "I have a question about PMR and elevated liver enzymes. Has anyone heard that liver function..." + (show)
@charlie333

I have a question about PMR and elevated liver enzymes. Has anyone heard that liver function tests can be elevated when you have PMR?

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Hi @charlie333, I had not heard about elevated liver enzymes or experienced them when my PMR was active but did find some information that mentions elevated numbers.

Liver Involvement in Polymyalgia Rheumatica: https://pubmed.ncbi.nlm.nih.gov/1006209/

Have you had tests that show you have elevated liver enzymes?

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1 reply
charlie333 | @charlie333 | May 16, 2020
In reply to @johnbishop "Hi @charlie333, I had not heard about elevated liver enzymes or experienced them when my PMR..." + (show)
@johnbishop

Hi @charlie333, I had not heard about elevated liver enzymes or experienced them when my PMR was active but did find some information that mentions elevated numbers.

Liver Involvement in Polymyalgia Rheumatica: https://pubmed.ncbi.nlm.nih.gov/1006209/

Have you had tests that show you have elevated liver enzymes?

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Thanks John - very helpful articles -

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terre | @terre | May 18, 2020
In reply to @charlie333 "I have a question about PMR and elevated liver enzymes. Has anyone heard that liver function..." + (show)
@charlie333

I have a question about PMR and elevated liver enzymes. Has anyone heard that liver function tests can be elevated when you have PMR?

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Hello Charlie. At one point I had elevated "everything" as I believe my body was reacting negatively towards this very complicated medical issue and the steroids. I was sent to a hematologist that was very good and I am so thankful for him as he ruled out everything else and diagnosed me with PMR - as all other doctors were stumped as to why I felt so sick, was so weak and in such pain. I have only one advise for EVERYONE. Get OFF the steroids, take the rapid release Tylenol, go see a really good chiropractor for the stiffness and pain in your neck and shoulders & include physical therapy and stretching. Your PCP will be happy to give you the RX for this therapy.
It took 4 months and today I can say that I have very few episodes of pain. Mostly a little stiffness and then I stretch my neck gently holding old the different stretches for 10-15 seconds. I do this throughout the day and believe me it works. I can now carry items like groceries, boxes, etc which I could not do before as my arms and hands were so weak I could not even open a shampoo bottle. I am not a quitter! PMR is terrible! I can see where it would be so easy to just keep on the steroids as they really do work. But it only masks the problem - they fix nothing. I take walks to strengthen my legs and lungs and feel so much better. Also, My mind is back to being clear. Not sure if you have any symptoms of GCA. I had immense tenderness on my scalp that moved to different areas daily and at one point could not even put my head back on the head rest in the car. Although the neurologist said he did not think I had GCA as I had no pain in my temples; it was odd that I had all the pain on my scalp. With my chiropractic care, the physical therapy and slow increase of activity/exercise that too is almost completely gone! I know this was long but I want people to understand that this can be made better without steroids, and that with time you can feel pretty much back to normal 🙂

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jfarreast | @jfarreast | Aug 31, 2020
In reply to @barbararene "Hope everyone is having a good day. Wish we were all pain free. After 2 1/2..." + (show)
@barbararene

Hope everyone is having a good day. Wish we were all pain free.
After 2 1/2 years I am now on 2 mg of prednisone daily. I am feeling bewtter and would say have improved 90%. I can say that today, I don't know what tomorrow will bring.
I have not had any luck going down to 1 mg and I like so many of you don't want to have a relapse and have to return to 5mg or higher.
Last time I did get to 1 mg and so much pain came back that I did have to increase back up to 5.
I'm wondering if at 60 yrs old I am going to have to take 2 mg a day for many years, if not ongoing.
I know the side effects are bad, but do we think the side affects of osteporosis would be devastating at 2 mg?
I do have a small fatty pocket at the base of my neck. I have read that this is a side effect.
I am taking a 50 mg of tramadol every night. I don't like that I am in that habit, but I feel I sleep better. It is an addicting medication though. It may not be a strong pain killer, but still addictive.
I don't think my rheumatoid Dr knows a lot about PMR, nor does anyone that I can find.
My wishes are for a good day for all that are dealing w PMR. Know that you are not alone and you can get better.
Yes, prednisone is a wonder drug for this illness, but no medication comes wo side effects, sadly.
God Bless,
Barbara Rene'

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Dear Barbara,
It's been a couple of years since you posted and I wonder how you are doing now. In mid-May 2020 I lost sight in my right eye overnight and thank God, was immediately diagnosed with Giant Cell Arteritis. I was urgently put on 60 mg prednisone, now tapered down to 20 mg with another month down to 10 mg on which I will have to take for the rest of my life in order to save the other eye. Am looking forward to getting back to normal. I hope I don't have to take this high dose again. l've gained 6kg, some of it water but mostly fat. I realize I will have to deal with mild side-effects of prednisone but I am ready to make that sacrifice.

PMR is a companion to GCA and I think I may have had it for 10 or more years, un-diagnosed.

I'm writing because I am concerned about what you said about Tramadol. I took it for the body pain of what I now think is PMR for 2 years and gradually got worse and worse. When I finally realized I might be addicted, I decided I had to come off of it, suffered greatly for 2 or 3 weeks but now feel much better. My legs seem to work much better without it. I hope you can report the same thing.

All the best,
Jeanne

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