PMR and RA

Posted by kmb181 @kmb181, Jan 18, 2022

I am a 53 year old woman. About 7 years ago, I started having hip pain, elbow pain, neck pain, and shoulder pain. I was having trouble sleeping, exercising hurt, and made my legs feel very weak. My PCP sent me to a Rheumatologist. My Sediment level, and CRP were very high, and I had a positive Rheumatoid Factor.
I had multiple radiographs taken, and RA was ruled out. I was then diagnosed with PMR. I was started on Prednisone. The higher dose of Pred helped with some of the pain, but not all of it, and I was still struggling. When I weaned down to 5mg., I stayed on that dose for about 4 years. Still really struggling with pain, and I was worn out.
I ended up moving, and seeing a new Rheumatologist. I was having so much pain that I could hardly function. My Sediment, and CRP were again very elevated, even on the 5 mg of Prednisone.
I had a CT scan of my hips, and spine. I found out I had scoliosis in two places in my back, and degenerative disc disease. I was also diagnosed with RA, taken off Pred, and put on a cancer drug.
I stayed in constant pain, and struggled for a few more months. Per my PCP, I decided to get a second opinion. I went to my 3rd Rheumatologist, and was diagnosed with Fibromyalgia. He took me off all meds, and put me on Cymbalta. He said I did not have PMR, or RA. Again I struggled for months in so much pain, and started having some shortness of breath, and my eyes were staying bloodshot. I went back to see my PCP, My Sediment level, and CRP were very elevated. I also had a Chest CT with dye.
The chest CT was normal. I was put on Doxycycline for a possible Viral infection, and back on a Prednisone pack.
I am currently on 5mg of Prednisone, and 60 mg of Cymbalta. And, in pain.
My PCP sent a referral to Duke, and I have an appointment in March, which is the soonest they can get me in. I am hoping they can give me a diagnosis, and maybe help me with pain relief, so I can live the active life I use to live.
Any suggestions, or advice?

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Hello @kmb181, Welcome to Connect. I know it has to be difficult not getting any real answers after seeing so many doctors and 3 different rheumatologists. I'm glad to hear your PCP lined you up with a referral to Duke which is a teaching hospital. There are a lot of different conditions that mimic PMR so my hope is that they will be able to provide a diagnosis and treatment that helps. Here's an article that describes some of the possibilities:

Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Did your PCP that provided the referral have any suggestions to help while you wait for your appointment in March?

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@johnbishop

Hello @kmb181, Welcome to Connect. I know it has to be difficult not getting any real answers after seeing so many doctors and 3 different rheumatologists. I'm glad to hear your PCP lined you up with a referral to Duke which is a teaching hospital. There are a lot of different conditions that mimic PMR so my hope is that they will be able to provide a diagnosis and treatment that helps. Here's an article that describes some of the possibilities:

Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Did your PCP that provided the referral have any suggestions to help while you wait for your appointment in March?

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Hi,
Thank you for your response, and the article.
Right now I’m on 5mg of Pred, and 60mg of Cymbalta. Im trying to keep moving, but some days are harder than others. And, I’ve been dealing with this for almost 7 years, so it’s taken a toll on my entire life.
My PCP has been great, but admits that this is not her forte. She listens, and runs tests as needed. She will up my Pred if my bloodwork is elevated, and I get to the really uncomfortable point.
Kathy

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@kmb181

Hi,
Thank you for your response, and the article.
Right now I’m on 5mg of Pred, and 60mg of Cymbalta. Im trying to keep moving, but some days are harder than others. And, I’ve been dealing with this for almost 7 years, so it’s taken a toll on my entire life.
My PCP has been great, but admits that this is not her forte. She listens, and runs tests as needed. She will up my Pred if my bloodwork is elevated, and I get to the really uncomfortable point.
Kathy

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Have you noticed any foods that might trigger or make your symptoms a little worse? My second occurrence with PMR went much better than the first time with PMR because I started making some lifestyle changes to prevent gaining more weight from the prednisone. I was surprised that it also helped me taper off of prednisone quicker. I'm not sure if this will be helpful but it might be worth a try if you aren't already doing it. I think it also helps with many autoimmune conditions.

Polymyalgia Rheumatica Diet: Do's and Don'ts – Healthline: https://www.healthline.com/health/polymyalgia-rheumatica-diet

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Why have they ruled RA out? I’m guessing but it seems to me they’d t

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@nleejewell

Why have they ruled RA out? I’m guessing but it seems to me they’d t

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Sorry – this message above cut off and went before I finished! I’m wondering why they haven’t tried you on any drugs that are helpful for many with RA?

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I was dx with pmr last December and then RA A FEW months later . I’ve been on prednisone since and am trying to taper off but can’t get lower then 7 mg. He is now starting methotrexate. My question to you all is does your Rheumatogist ever do a physical exam like check heart, lungs joints.. My Rheumatogist only asks me questions every month draws labs and prescribes meds. Wondering if this is same for everyone? My right leg was so swollen and painful after my last vaccination and he didn’t even care to check it? Was thinking of switching to another MD

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@dubecates

I was dx with pmr last December and then RA A FEW months later . I’ve been on prednisone since and am trying to taper off but can’t get lower then 7 mg. He is now starting methotrexate. My question to you all is does your Rheumatogist ever do a physical exam like check heart, lungs joints.. My Rheumatogist only asks me questions every month draws labs and prescribes meds. Wondering if this is same for everyone? My right leg was so swollen and painful after my last vaccination and he didn’t even care to check it? Was thinking of switching to another MD

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My Rheumatologist does a physical exam at every appointment, heart, lungs, joints, and checks my strength in upper and lower body, which he rates on a scale of 1 to 5. 5 being very good body strength. I also was seen by a rheumatologist at Mayo Clinic who did the same. Having a good care team is so important! 🙏 Kathryn

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@dubecates

I was dx with pmr last December and then RA A FEW months later . I’ve been on prednisone since and am trying to taper off but can’t get lower then 7 mg. He is now starting methotrexate. My question to you all is does your Rheumatogist ever do a physical exam like check heart, lungs joints.. My Rheumatogist only asks me questions every month draws labs and prescribes meds. Wondering if this is same for everyone? My right leg was so swollen and painful after my last vaccination and he didn’t even care to check it? Was thinking of switching to another MD

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Which Mayo Clinic? in Jacksonville?

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@dubecates

I was dx with pmr last December and then RA A FEW months later . I’ve been on prednisone since and am trying to taper off but can’t get lower then 7 mg. He is now starting methotrexate. My question to you all is does your Rheumatogist ever do a physical exam like check heart, lungs joints.. My Rheumatogist only asks me questions every month draws labs and prescribes meds. Wondering if this is same for everyone? My right leg was so swollen and painful after my last vaccination and he didn’t even care to check it? Was thinking of switching to another MD

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@dubecates You seem to have several autoimmune diseases that you’re juggling. And now you’re not pleased with the current doctor. I would like to think that a doctor would do a physical exam. Otherwise, how would they know if there are any changes! This doctor might be relying on your PCP to check things like a swollen leg. I know my neurologist told me that she only treats my brain and everything else i should report to my PCP. I would suggest that you ask the rheumatologist how he/she practices. Will you do that and let me know the answer?
Does this doctor treat ALL of your autoimmune diseases? Other than this one incident, are you pleased with the care?

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@rexsan20

Which Mayo Clinic? in Jacksonville?

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Rochester Minnesota

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