1. < Polymyalgia Rheumatica (PMR)

Possibly Misdiagnosed?

Posted by susanew @susanew, Aug 1 8:38am

I never had any bloodwork inflammation markers for PMR. Tested twice now. But due to age and joint stiffness in neck, hips, thighs, legs, I was diagnosed with PMR. The highest dose taken was 8 mg. Medrol (Methylprednisolone). At 8 mg, I felt great but always tired. Then I finally leveled out on 2 mg Medrol but still tired but no stiffness. Now I have tapered down to 1 mg. Prednisone and am no longer tired but have some stiffness and discomfort in my left leg only. It has been almost two weeks on 1 mg. I basically have the discomfort and stiffness in left hip/thigh. Recently had an MRI and my PCP said it showed some tendonitis but nothing much else significant. So now I am at a loss … is this PMR or prednisone tapering or just symptoms of getting old?

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 1 9:05am

Hi @susanew, It is possible to have PMR and also have normal bloodwork inflammation markers. There are a number of other discussions and member comments on that specific question. You might want to scan through the discussions and comments here - https://connect.mayoclinic.org/search/?search=PMR+with+normal.

You are not alone with your questions about your diagnosis. There are also a few other discussions you might want to look through.

-- Questioning PMR diagnosis:
https://connect.mayoclinic.org/discussion/questioning-pmr-diagnosis/
-- Do I really have PMR?:
https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/
-- PMR initial diagnosis: Can there be an underlying disease?
https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
It is definitely a good idea to discuss your symptoms and any questions with your doctor. Have you discussed your questions with a rheumatologist?

REPLY
tuckerp | @tuckerp | Aug 1 11:57am

I would say that your being at 1mg is excellent news for being able to stop. 1mg means that your body is most likely producing cortisol. But it can take several months for your body to adjust and reawaken from not producing cortisol. It took me about 3 months for aches and pains to go away. I have also gotten older and many of us feel sort of an adrenal fatigue. Although that term is not medically recognized. The correct term is that your body is not asking for the correct amount. It also seems that PMR might have awakened some arthritis , previous injuries, other autoimmune conditions. The tendonitis is typical for the inflammation you went through. 2 years later I still have some aches in my knees and my right hip. So I would say its more of a typical prednisone withdrawal symptom. It will get better. Alleve worked for me during this time.

REPLY
jabrown0407 | @jabrown0407 | Aug 2 12:22pm

Since you mentioned that you have pain in your hip/thigh I would consider asking my doctor to test of greater trochanter bursitis. If your PCP is hesitant then see an orthopedic doctor who specializes in hips/knees. I had to do all types of research on my pian points because I was sick for over a year before I was diagnosed. I also resisted steroids for some time and finally caved following my bout with Covid.
Trochanter bursitis is not uncommon with PMR. Mine is being treated by a pain management specialist. They have used steroid injections, guided steroid injections and wet needling on me. I prefer the wet needling because it is not a steroid. Needling is not a cakewalk. It stimulates your body's self-healing process, so it takes time but seems to work well and lasts longer than injections with no ucky long term side effects. Hope you get more relief quickly.

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