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.

@jfarreast

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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@jfarreast Sorry to hear you lost sight in your right eye but glad you are doing well now. Did you ever recover any sight in the right eye? Kind Regards, David

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Sight did not improve. I have some peripheral sight, especially light but no straight on sight. I can see the shape of a person but not their features. It's not a disability, just a nuance, frustration at times.

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My very first symptom that made me go to the doctor was a sudden pain in both arms. It was pretty much like ‘brain freeze’ the same as when you eat ice cream too fast. It starts slowly and then increases in intensity then goes back down slowly. It was weeks later that I experienced the stiffness coming on. The reason I ask is I just worry that maybe this pain isn’t PMR.

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@layla7511

My very first symptom that made me go to the doctor was a sudden pain in both arms. It was pretty much like ‘brain freeze’ the same as when you eat ice cream too fast. It starts slowly and then increases in intensity then goes back down slowly. It was weeks later that I experienced the stiffness coming on. The reason I ask is I just worry that maybe this pain isn’t PMR.

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Hi @layla7511 as you will see I added your new conversation to a discussion that is long standing about PMR. I did this so rather than starting a whole new discussion, you could get tips and suggestions from people who are already dealing with the symptoms they have experienced and if what you are feeling is similar. I'd like to invite @jfarreast, @phoenix0509, @terre, @rachelp, and @charlena to the conversation to get their take on what you are currently dealing with.
Layla, are you having any other symptoms that make you feel this may not be PMR?

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@layla7511

My very first symptom that made me go to the doctor was a sudden pain in both arms. It was pretty much like ‘brain freeze’ the same as when you eat ice cream too fast. It starts slowly and then increases in intensity then goes back down slowly. It was weeks later that I experienced the stiffness coming on. The reason I ask is I just worry that maybe this pain isn’t PMR.

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Hello @layla7511, When I had my first occurrence of PMR, it was worse in the morning but gradually got better during the day and got progressively worse and the pain stayed with me all day/night until I met with a rheumatologist and was diagnosed then put on prednisone.

Excerpt from Mayo Clinic Polymyalgia rheumatica - Symptoms and causes:
"Aches or pain in your shoulders. Aches or pain in your neck, upper arms, buttocks, hips or thighs. Stiffness in affected areas, particularly in the morning or after being inactive for a time. Limited range of motion in affected areas. Pain or stiffness in your wrists, elbows or knees." -- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

You mentioned that you worry that the pain is not caused by PMR. Normally when you are diagnosed the doctor or rheumatologist will prescribe prednisone as the drug of choice and it gets rid of the symptoms pretty quick. Did your rheumatologist prescribe any medications like prednisone for you?

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@amandaa

Hi @layla7511 as you will see I added your new conversation to a discussion that is long standing about PMR. I did this so rather than starting a whole new discussion, you could get tips and suggestions from people who are already dealing with the symptoms they have experienced and if what you are feeling is similar. I'd like to invite @jfarreast, @phoenix0509, @terre, @rachelp, and @charlena to the conversation to get their take on what you are currently dealing with.
Layla, are you having any other symptoms that make you feel this may not be PMR?

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No, all other symptoms seem to fit the PMR diagnosis.

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@johnbishop

Hello @layla7511, When I had my first occurrence of PMR, it was worse in the morning but gradually got better during the day and got progressively worse and the pain stayed with me all day/night until I met with a rheumatologist and was diagnosed then put on prednisone.

Excerpt from Mayo Clinic Polymyalgia rheumatica - Symptoms and causes:
"Aches or pain in your shoulders. Aches or pain in your neck, upper arms, buttocks, hips or thighs. Stiffness in affected areas, particularly in the morning or after being inactive for a time. Limited range of motion in affected areas. Pain or stiffness in your wrists, elbows or knees." -- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

You mentioned that you worry that the pain is not caused by PMR. Normally when you are diagnosed the doctor or rheumatologist will prescribe prednisone as the drug of choice and it gets rid of the symptoms pretty quick. Did your rheumatologist prescribe any medications like prednisone for you?

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Yes I started with 60 mg due to possible GCA and went down to 3 mg - the only symptom I have now is the one I described in the question. I am now going back to 5 mg.

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Greetings. I thought I would join the discussion as well because i wondered at first whether i had PMR or arthritis. I am 65 and have had osteoarthritis in my neck and lower back for several years along with hypothyroidism, eczema and Irritable bowel syndrome. I felt for sometime that my immune system was in "hyper drive" because of the eczema flares, but all of my immunologic markers were in the normal range.
I have also been very active (irish dancing, yoga, hiking, pickleball, etc.) In April of this year i started feeling bi-lateral, generalized pain in my shoulders, hips, thighs, and buttocks that came on very quickly. I knew that it was not osteoarthritis or tendonitis, etc. because of the bilateral nature of this discomfort and was quite sure that I had PMR. I went to my G.P. first and I am not sure he even knew what PMR was. I, went to another G.P. and asked for a CRP and ESR. They were in the normal range but the pain continued. I knew that approximately 20% of people with PMR have normal blood values, so I made an appt with a Rheumatologist who confirmed PMR. Within 36 hours of taking 10 mg of prednisone, I was pain free. I am now tapering 1 mg. a month and am at 7 mg. My eczema and IBS is better as well, although I do realize that is probably the effect of the prednisone and may come back when I discontinue. I try to eat a relatively anti-inflammatory diet. Unfortunately, the Rheumatologist also did a DEXA scan and I have osteopenia and they wanted to start me on fosamax, although I am inclined not to start that and use other methods (upping calcium, Vitamin D2, K, weighted vest, etc.) I am really grateful to my Rheumatologist for being so thorough. She also checked my parathyroid which is elevated and i will see an endocrinologist in a couple weeks.
With all this said, sometimes it seems hard to sort out what is the "root" cause of our symptoms when there are so many things at play. The one thing that i have found out is that you sure have to be an advocate for your own health and be resourceful. That is why i am really grateful for this group and the PMR/GCA group. I feel like I have learned much from those that share their story.

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Your journey sounds similar to mine. I have weaned down to three mg of prednisone for the third time, then the flare ups start. Last appt my CRP way up again. Didn't seem to matter if on five or four mg still same pain so agreed to take 15mg of Meloxicam for a month and repeat blood test. Pain was at minimal and inflation markers down. So she decided probably pain is my osteo arthritis and reduce dosage or use as needed with Meloxicam; still continue my reduction in prednisone for PMR. So after all that still have pain and weakness and no answers of why inflammation. Now I've encountered a new problem... My skin had become sensitive to touch. Its uncomfortable to even have a shirt on as it had the sensation you get when you've had a sunburn and fabric is rubbing against it. PMR is very mysterious and always throwing a new curve at you. @pampep

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@pampep

Your journey sounds similar to mine. I have weaned down to three mg of prednisone for the third time, then the flare ups start. Last appt my CRP way up again. Didn't seem to matter if on five or four mg still same pain so agreed to take 15mg of Meloxicam for a month and repeat blood test. Pain was at minimal and inflation markers down. So she decided probably pain is my osteo arthritis and reduce dosage or use as needed with Meloxicam; still continue my reduction in prednisone for PMR. So after all that still have pain and weakness and no answers of why inflammation. Now I've encountered a new problem... My skin had become sensitive to touch. Its uncomfortable to even have a shirt on as it had the sensation you get when you've had a sunburn and fabric is rubbing against it. PMR is very mysterious and always throwing a new curve at you. @pampep

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Interesting comment re sensitivity of your skin @pampep. Prior to my diagnosis of PMR the backs of my hands became sensitive at irregular intervals and it was like someone running a knife across my hands. Your analogy of sunburn is probably closer than mine in retrospect. It disappeared after going onto Prednisolone but in the last week have started to notice it coming back but not everyday and doesn’t last long and at the moment only on the back of my left hand.

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