Is everyone here diagnosed with PMR seeing a rheumatologist?

Posted by traynor4 @traynor4, Apr 22, 2022

My GP has not suggested seeing a rheumatologist. I am wondering if everyone that has been diagnosed with PMR is seeing a rheumatologist? Also, how often does everyone get bloodwork done? I am getting a little frustrated with my Dr.
Thank you!

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Yes, and I changed doctors as I lost all confidence with my original GP of some 10yrs.

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It took 4 months for a GCA diagnosis. My PCP was not helpful. I finally went to a neurologist for the excruciating headache and he diagnosed me. Most doctors are baffled by GCA and PMR. You have to be your own advocate and be proactive.

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@johnbishop

@tsc, @milld835, @microbe1943 and others may also have some thoughts on seeing a GP vs a rheumatologist for diagnosing PMR.

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My primary care provider (she is an internist) said "that sounds like PMR", right off the bat. She drew labs then (all normal) and began 20 mg. of prednisone. I was pain free within 48 hours. She said this quick response to steroids was almost diagnostic for PMR. Then while working through a taper and symptoms would come and go she and I thought a referral to a rheumatologist would be helpful. He drew many more labs, reviewed PMR and other autoimmune dx's but seconded My PCP's dx and treatment. He even said "you are the poster child for PMR" ..acute onset of symptoms, 70 year old white female. This was very reassuring to me (?poster child) and lessened my concerns that "something else" was going on. I am down to 3.75 mg of pred after 10 months, but still I have aches and stiffness especially with exercise. The challenge now is trying to find that balance and take the least amount of meds. This group chatting has been helpful as it has showed me the broad experiences with PMR that folks have.

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I am seeing a rheumatologist and get blood work once every few months.

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@ggustafson

It took 6 mos of pain to be diagnosed. GP didnt seem to believe me when I talked about my symptoms. He actually made fun of people who use google to diagnose themselves. I finally asked for a referral to rhuematolgist. After blood tests she understood right away and prescribed prednisone... I feel so much better.

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I also approached my PCP re PMR after reading about it online (I checked nearly every box of symptoms). She didn’t believe I could have it as all my labs were normal. She did refer me to a rheumatologist though who made the diagnosis. I could’ve missed out on on 2 months of pain. Sorry you had to endure 6!

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I am only seeing my GP (since December) and she seems knowledgeable. I have been going for blood tests monthly.

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@tillysam

It took 4 months for a GCA diagnosis. My PCP was not helpful. I finally went to a neurologist for the excruciating headache and he diagnosed me. Most doctors are baffled by GCA and PMR. You have to be your own advocate and be proactive.

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It is exhausting to stay informed about PMR and GCA, but you need to know to advocate for yourself.

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I have a PMR/GCA and I’m currently seeing a rheumatologist. It was a rocky start, but I seem to be on an OK track now. You DEFINITELY need to be totally informed and your own advocate. I read a sentence that I thought was really spot on “that tapering from prednisone is an art not a science.” I also have been called the poster child of PMR !! Every factor from age to ethnicity fits right in with me!!
Had blood test this morning and I’m praying that my markers are good so I can go down at least another 5 mg.
Thank you all for this community. It means so much to me.

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@cambrose

My primary care provider (she is an internist) said "that sounds like PMR", right off the bat. She drew labs then (all normal) and began 20 mg. of prednisone. I was pain free within 48 hours. She said this quick response to steroids was almost diagnostic for PMR. Then while working through a taper and symptoms would come and go she and I thought a referral to a rheumatologist would be helpful. He drew many more labs, reviewed PMR and other autoimmune dx's but seconded My PCP's dx and treatment. He even said "you are the poster child for PMR" ..acute onset of symptoms, 70 year old white female. This was very reassuring to me (?poster child) and lessened my concerns that "something else" was going on. I am down to 3.75 mg of pred after 10 months, but still I have aches and stiffness especially with exercise. The challenge now is trying to find that balance and take the least amount of meds. This group chatting has been helpful as it has showed me the broad experiences with PMR that folks have.

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This is good to know about the "normal" blood tests. My pain started 3 years ago and I've seen multiple doctors. Steriods (because they thought I had a back problem) really helped temporarily. Finally someone thought maybe PMR but my blood tests were normal so I was told couldn't be it. I am getting better but 3 years is a long time.. Thought about a rheumatologist but wonder if I can do anything at this late date AND my area is booking 6-9 months out.

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My primary care physician was the first to diagnose PMR after seeing me when symptoms first appeared. She also suggested that a rheumatologist be added to my healthcare team. Continuing treatment for PMR is now being done primarily through the rheumatologist although my PC doctor keeps tabs with my progress, dosage schedule, and associated details.

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