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?

@rolandhp

Hi Pauletta I to have had PMR going on 4 years now I started on 20 mg of prednisone & have worked myself down to 2.5 mg/day & on occasions depending on the weather conditions & have to pop a 5 mg. I also have heard that some patients never go into remission not to encouraging I must say. The secrete is keep active I myself do a lot of gym work I also am a cyclist & in the winter months I down hill ski I also enjoy my motorcycle. My blood work up is good but still have pain in my fingers but not the thumbs strange also pain in my wrist my shoulders & neck. Oh I am also 78 & refuse to give up staying active is the secret we must work through our ailments. Roland

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Knowing that some patients never go into remission is not a comforting thought, but it is a fact.

Remaining active is a key component in treatment of this disease. My challenge has been to determine the level of activity my body will allow. Too much activity seems to trigger the PMR pain for a few days.

Accepting the fatigue component of PMR is a great challenge for me as well.

Accepting that my body will never return to its pre-PMR state has been difficult, but I am getting there.

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@rachelp

Knowing that some patients never go into remission is not a comforting thought, but it is a fact.

Remaining active is a key component in treatment of this disease. My challenge has been to determine the level of activity my body will allow. Too much activity seems to trigger the PMR pain for a few days.

Accepting the fatigue component of PMR is a great challenge for me as well.

Accepting that my body will never return to its pre-PMR state has been difficult, but I am getting there.

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@rachelp I so agree with your statements about fatigue and body not returning to its previous state. I used to be so active and volunteered for everything and now I just try to do what I can. I have an autoimmune disease, not PMR, but the end result is all the same: fatigue, being on prednisone, and not just doing what you want to do. But! Enough whining for me! I have to think and be positive! What do you find that helps you stay positive? Becky

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@becsbuddy

@rachelp I so agree with your statements about fatigue and body not returning to its previous state. I used to be so active and volunteered for everything and now I just try to do what I can. I have an autoimmune disease, not PMR, but the end result is all the same: fatigue, being on prednisone, and not just doing what you want to do. But! Enough whining for me! I have to think and be positive! What do you find that helps you stay positive? Becky

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I remain positive because my treatment for PMR is working–not as quickly as I wanted, but it is working. My positivity is reinforced every day I am able to stand up, walk, and use my arms normally. With treatment, I can do all those things I once did but nor for as long as I once did them. For every four hours of energy expended, I may have to rest four hours. But . . . I am still as active as I can be, and I am mobile. Joy!

It seems to me that staying positive depends greatly upon self-talk, ie what we tell ourselves. Negative self-talk is extremely debilitating. I try to be aware of when I allow negative thoughts to enter my awareness, and I review the progress I have made.

In my view, knowledge is power. That is one reason I joined this group. There is no substitute for firsthand experience, and I have gotten a lot of insight and encouragement from reading others' experiences with autoimmune diseases. I constantly research autoimmune diseases because that is a fertile area of study, and the latest findings are often unknown to local doctors. I have, in the previous statements in this paragraph, laid the foundation for this statement: I do not waste my time with doctors who show little or no interest in serving a patient who has an issue that requires thinking outside the box. That is a lesson I learned the hard way.

By the way, in addition to Mayo, I have used my state's university hospital because they are, generally, on top of the latest medical practices. For me, making the extra effort to get access to more specialized and knowledgeable medical advice, has paid off.

Do I wish I could do all the things I did three years ago? You bet! Do I mope about it? No. I decided to make the best of each day.

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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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@rachelp

I remain positive because my treatment for PMR is working–not as quickly as I wanted, but it is working. My positivity is reinforced every day I am able to stand up, walk, and use my arms normally. With treatment, I can do all those things I once did but nor for as long as I once did them. For every four hours of energy expended, I may have to rest four hours. But . . . I am still as active as I can be, and I am mobile. Joy!

It seems to me that staying positive depends greatly upon self-talk, ie what we tell ourselves. Negative self-talk is extremely debilitating. I try to be aware of when I allow negative thoughts to enter my awareness, and I review the progress I have made.

In my view, knowledge is power. That is one reason I joined this group. There is no substitute for firsthand experience, and I have gotten a lot of insight and encouragement from reading others' experiences with autoimmune diseases. I constantly research autoimmune diseases because that is a fertile area of study, and the latest findings are often unknown to local doctors. I have, in the previous statements in this paragraph, laid the foundation for this statement: I do not waste my time with doctors who show little or no interest in serving a patient who has an issue that requires thinking outside the box. That is a lesson I learned the hard way.

By the way, in addition to Mayo, I have used my state's university hospital because they are, generally, on top of the latest medical practices. For me, making the extra effort to get access to more specialized and knowledgeable medical advice, has paid off.

Do I wish I could do all the things I did three years ago? You bet! Do I mope about it? No. I decided to make the best of each day.

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@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

@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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@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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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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@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!

Liked by phoenix0509

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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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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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@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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@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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@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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