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Polymyalgia Rheumatica....

rock on

By rock on
in Related Issues & Disorders

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rock on Apprentice
rock on
Posted

Hi all,

My husband just found out that his Mom probably has polymyalgia rheumatica, a sort of inflammatory arthritis. She's been feeling really run down for weeks, has had a low grade fever, but no major aches & pains. The blood tests came back with really high Sed Rates. Everything else was normal.

We were just wondering if going gluten free could help her. Since my husband has psoriatic arthritis, which is also an inflammatory arthritis, and has had a slowly positive response to gluten-free, we were thinking maybe she should try it too.

Anyone have any experience with this - or research info related to this?

Thanks!!!

  • 4 weeks later...
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Glutenfreefamily Enthusiast
Glutenfreefamily
Posted

Im sorry it looks like your post didnt get pinned, Im going to bump it up so hopefully it gets noticed. Sorry I cant help with your question but hopefully someone else can :)

Generic Apprentice
Generic
Posted

My dad has that, but refuses to go gluten free. I am pretty sure it would be a night and day difference. I also would love to read any info any one might have.

ravenwoodglass Mentor
ravenwoodglass
Posted

From the NIH:(the bold is mine)

From the NIH: Polymyalgia rheumatica is a rheumatic disorder that is associated with moderate to severe muscle pain and stiffness in the neck, shoulder, and hip area. The cause of polymyalgia rheumatica is not known; however, possibilities include immune system abnormalities and genetic factors.

From the Arthritis Society (the bold is mine):

The type of arthritis has to be determined first. Is the arthritis due to the Crohn

rock on Apprentice
rock on
Posted
  • Author

Thanks for your responses.

She has decided to go gluten free. She is also on prednisone. She immediately started feeling better when she started the prednisone. She is now able to taper down on the dosage (hooray for small miracles).

She has chosen to go gluten-free to help reduce any inflammation in her body so that she can be weaned off the prednisone as soon as possible. It's hard to tell if the gluten-free is helping anything, since she never really presented with major pains anyway.

I agree with you Ravenwood...we're still not sure if polymyalgia rheumatica is the correct dx for her. She just recently told us that when she was 17 she had a bout of 'Icelandic Disease' for about 3 months (also an immune issue) but her current dr does not think the 2 are connected. How could they not be?!

If anyone has any other info on this condition, it would be appreciated.

Thanks & Happy New Year!!

mushroom Proficient
mushroom
Posted
Thanks for your responses.

She has decided to go gluten free. She is also on prednisone. She immediately started feeling better when she started the prednisone. She is now able to taper down on the dosage (hooray for small miracles).

She has chosen to go gluten-free to help reduce any inflammation in her body so that she can be weaned off the prednisone as soon as possible. It's hard to tell if the gluten-free is helping anything, since she never really presented with major pains anyway.

I agree with you Ravenwood...we're still not sure if polymyalgia rheumatica is the correct dx for her. She just recently told us that when she was 17 she had a bout of 'Icelandic Disease' for about 3 months (also an immune issue) but her current dr does not think the 2 are connected. How could they not be?!

If anyone has any other info on this condition, it would be appreciated.

Thanks & Happy New Year!!

mushroom Proficient
mushroom
Posted

I have been consecutively diagnosed (five years ago) with polymyalgia rheumatica, then rheumatoid arthritis (symptoms of both) followed by psoriatic arthritis when the psoriasis later appeared. Have also had gout. Father was diagnosed with polymalgia, sister and her daughter both celiacs. I was also previously diagnosed with IBS, fibromyalgia and various other erroneous diagnoses. Treated for auto immune disorders with methotrexate, sulfasalazine, NSAIDS, Plaquenil, all of which became toxic to me (Prednisone was already a no-no for me). Since stopping all meds and going gluten free two months ago, and now under care of a naturopath, all arthritic pain is gone, and psoriasis is 50% better. Swollen digits are returning to normal. Still have high levels of inflammation, however (CRP and sed rate). Was always RA negative. Am awaiting further developments hopefully.

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ravenwoodglass Mentor
ravenwoodglass
Posted
I have been consecutively diagnosed (five years ago) with polymyalgia rheumatica, then rheumatoid arthritis (symptoms of both) followed by psoriatic arthritis when the psoriasis later appeared. Have also had gout. Father was diagnosed with polymalgia, sister and her daughter both celiacs. I was also previously diagnosed with IBS, fibromyalgia and various other erroneous diagnoses. Treated for auto immune disorders with methotrexate, sulfasalazine, NSAIDS, Plaquenil, all of which became toxic to me (Prednisone was already a no-no for me). Since stopping all meds and going gluten free two months ago, and now under care of a naturopath, all arthritic pain is gone, and psoriasis is 50% better. Swollen digits are returning to normal. Still have high levels of inflammation, however (CRP and sed rate). Was always RA negative. Am awaiting further developments hopefully.

It's amazing isn't it when the pain goes away! I just wish doctors would at least suggest it as a possibility when folks appear with arthritic pain and so many other related disorders. Like you I was on a pharmacopia of meds, a tackle box full, when all I needed was a change in diet. It can take a while to heal but it sounds like you are well on your way. One of my happiest days was the one when I cancelled my subscription to Arthritis Today!

mushroom Proficient
mushroom
Posted
It's amazing isn't it when the pain goes away! I just wish doctors would at least suggest it as a possibility when folks appear with arthritic pain and so many other related disorders. Like you I was on a pharmacopia of meds, a tackle box full, when all I needed was a change in diet. It can take a while to heal but it sounds like you are well on your way. One of my happiest days was the one when I cancelled my subscription to Arthritis Today!

Yes, you get so used to the pain you are astonished when it vanishes. I think the reason alleopathic doctors are not more understanding of these problems is that they have so little training in nutrition. Here in New Zealand I think it's about six hours! in basic medical training. My naturopath says that my whole GI system is inflamed, which would certainly explain why the inflammation spread to the rest of my body, to be expressed in all these other ways. My celiac sister, who is occasionally "naughty" with what she eats (her expression) has multiple other inexplicable aches and pain syndromes which I suspect may be related to other food allergies (she already knows she is allergic to salicylates and to weed and insecticidal sprays). I, myself, am intolerant to lactose, soy, and corn (the latter in the U.S. only, probably because it is all GM contaminated by now). Also cannot eat any beef but organic in U.S. probably because it is all fed GM corn. Down here beef and corn are no problem, but we are inexorably losing the GM fight. Darn!

nmw Newbie
nmw
Posted

My MIL was diagnosed with this a year ago and went for the steroids right away, even though she really didn't want to go on them. When I mentioned that a gluten-free diet might help with the inflammatory aspect of the disease her eyes glazed over and she changed the subject.

  • 4 years later...
cyberprof Enthusiast
cyberprof
Posted

I'm going to resurrect this old thread rather than start a new one. I know the OP isn't still around but raven and mushroom are. Hope to get input from anyone who has polymyalgia rheumatica.

My mom was diagnosed with polymyalgia rheumatica this week. She's been in terrible pain for months and is 80yo. I'm interested to know if anyone has had resolution of symptoms of polymyalgia rheumatica after going gluten-free? She has gone on steroids but probably shouldn't be on them for the rest of her life. (She's had regular osteoarthritis for 40+ years too.)

She has one diagnosed celiac kid (me) and one other negative but gluten-sensitive kid (my brother) who had great results on gluten-free diet but she refuses to consider gluten as her problem. She denies it because she's "never" had GI issues ...but forgets that I knew where all the bathrooms were as a kid because she would have "attacks" where she had to find a bathroom immediately! None of what I said has sunk in. Now with this diagnosis today, I hope she will listen. My dad is going to try to get her to try it.

We went to an arthritis seminar last month put on by the Arthritis Foundation. The speaker was Heidi Turner RD from The Seattle Arthritic Clinic Open Original Shared Link and her whole presentation was about the impact of food intolerances on pain and how to figure out if wheat (or dairy, soy, corn, nightshades) are the probelem. But I wasn't able to crack Mom's denial. I told my dad that if mom doesn't want to go gluten-free, she should at least go see Turner for a consult.

Big sigh. I hate to see her in pain and on drugs.

ravenwoodglass Mentor
ravenwoodglass
Posted

It would be great if you could get a consult with doctor Turner, especially if your Mom will let you go with her. However you may never get her to realize that her issues could be gluten related. Since you are a diagnosed celiac one thing you could do is call and ask to speak with her GP. Tell them you are diagnosed and suspect your Mom may be celiac also. While the doctor can not discuss your Mom's health issues with you due to Hippa regs that doesn't mean you can not discuss them with the doctor. If the doctor can 'sneak' in a celiac screening with some other blood work perhaps if she comes back positive she will listen to the doctor. It is also possible that she won't. I have family and close freinds who have symptoms that scream celiac like low cholesterol numbers and low vit D along with other symptoms but refuse to consider that they might need the diet also. As the old saying goes you can lead a horse to water, but you can't make him drink.

I really feel for you and wish I had a magic wand but.....

cyberprof Enthusiast
cyberprof
Posted

It would be great if you could get a consult with doctor Turner, especially if your Mom will let you go with her. However you may never get her to realize that her issues could be gluten related. Since you are a diagnosed celiac one thing you could do is call and ask to speak with her GP. Tell them you are diagnosed and suspect your Mom may be celiac also. While the doctor can not discuss your Mom's health issues with you due to Hippa regs that doesn't mean you can not discuss them with the doctor. If the doctor can 'sneak' in a celiac screening with some other blood work perhaps if she comes back positive she will listen to the doctor. It is also possible that she won't. I have family and close freinds who have symptoms that scream celiac like low cholesterol numbers and low vit D along with other symptoms but refuse to consider that they might need the diet also. As the old saying goes you can lead a horse to water, but you can't make him drink.

I really feel for you and wish I had a magic wand but.....

Thanks Raven. I know your history too and it helps that others here understand.

I think she and my dad have both had the blood test for celiac and were negative. That's the killer. But my blood was negative (while on gluten but after positive biopsy that found celiac by "accident"), my son's was negative, my brother's was negative. I don't know if we have a type of celiac that doesn't show or don't make enough blood antibodies or what (although I know that my son and I had all the tests, even the ones that show if someone is IgA deficient). Or maybe we're non-celiac gluten-intolerant but I do know that I got the gene from one of them. But unless her doc is going to do an endoscopy, there's a good chance the blood would be negative again.

I guess what I'd love to hear are success stories of people who had it and it went away after going gluten-free without steroids. Apparently it may go away after 2-3 years, but long-term steroid use isn't going to be good for her either.

I also wonder about low-dose methotrexate - maybe that would be a good option too.

mushroom Proficient
mushroom
Posted

While I was originally diagnosed with polymyalgia rheumatica, that was later changed to RA (RF negative) and then to psoriatic arthritis. It was my dad who lived with the diagnosis of polymyalgia rheumatica which I don't believe was accurate, because it is not something you get in your feet. He was on prednisone until he died, and all his teeth started rotting. I am sure he had gluten problems, as did my mom (and all four of us, their chldren). My PsA is mostly in remission, but if I quit my Humira for four months as I had to do this summer it starts to come back despite my no nightshade diet.

I am sorry I can't be of more help. :( No one in my family was ever tested for celiac, my oldest sister ate gluten free and her daughter is diagnosed celiac.

  • 4 years later...
jayhawker Newbie
jayhawker
Posted

I've been on the gluten-free diet for 32 years since my Celiac diagnosis in 1985 and I was just diagnosed with Polymyalgia Rheumatica (PMR) in March of this year. Having strictly followed the gluten-free diet, I can tell you it does NOT help PMR. Unfortunately, the only treatment that works for PMR is Prednisone. 

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