How many of you are on your second flare-up?

Posted by ncgal @ncgal, Sep 22, 2023

How many people have come off of Prednisone only to have it reoccur a month later? I have had PMR for 3.5 years and was finally able to wean off of Prednisone (after several flare-ups.) I was doing really well after I took my last pill, no pain, no symptoms, then Wham!!! I held off calling my rheumy thinking it would improve, but the pain just got worse. Couldn't sleep or get out of bed without shoulder and hip pain.
Here we go again. Now I'm back to 10 mgs Prednisone tapering 1/2 pill every three days. So sick of this disease. At least my wonderful rheumy got back to me within two hours. Thank goodness for Patient Portals.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Has anyone had swelling associated with severe pain from PMR? My shoulder and arm to below my elbow have swelled, and I can only blame it on PMR flare. I could not take any meds since I was preparing for hernia surgery, so suffered through it. Two weeks of severe pIn and swelling is enough! Calling rheumatologist on Monday.

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That taper schedule might be a little fast.

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@reets70

Has anyone had swelling associated with severe pain from PMR? My shoulder and arm to below my elbow have swelled, and I can only blame it on PMR flare. I could not take any meds since I was preparing for hernia surgery, so suffered through it. Two weeks of severe pIn and swelling is enough! Calling rheumatologist on Monday.

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I had severe pain, some swelling in my left arm four years ago. Had abnormal inflammation markers, elevated wbc count, sent me to the ER. They decided to eliminate any chance of an infection and did lots of tests including blood cultures. Finally decided it was a rheumatic response and gave me a 60 mg medrol IV. It worked, the pain disappeared. I was on 10 mg prednisone at the time and stayed at that dose. I followed up with seeing a hematologist as suggested because my wbc count was so high. It involved a series of sophisticated blood tests but stopped short of a bone marrow aspiration as my tests had returned to normal values.
I blame genetics for my problems. May be coincidence but my health issues seem to be left sided. I have AMD in my left eye, lost hearing in my left ear, had half of the left side of my thyroid removed, and the arm pain was the left arm.
My highest dose of prednisone has been 20 mg.
suzanne

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I’m assuming it was a PMR flare because I tapered off Medrol one week prior. I was in terrible pain and my inflammation was high again. I’m glad to see someone else had the same swelling.

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I have PMR and was on prednisone for 2 and a half years. I took my last dose of Prednisone on June 30 th. Now, the beginning of Oct, I have pain in neck, shoulders, and hips. At night when I try to sleep, it seems like I hurt all over. I am debating on restarting the prednisone. Is this common?

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I had my 1st episode about 5 years ago. I didn't know it could come back; that was an unhappy surprise.

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I’m on my 3rd bout of PMR. I find the longer I have dealt with it, the less I understand it. I am now 76 and on 1.5 mg of pred. My first bout was when I was 57, after which it was in remission for 12 years.

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@floridabonnie

I have PMR and was on prednisone for 2 and a half years. I took my last dose of Prednisone on June 30 th. Now, the beginning of Oct, I have pain in neck, shoulders, and hips. At night when I try to sleep, it seems like I hurt all over. I am debating on restarting the prednisone. Is this common?

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After about two years of PMR, I was down to 1 mg. of Prednisone, and pain free. That lasted a couple of weeks, and my left hip began hurting. For seven mouths, my hip has usually been in a mild to medium flare. Immediately applying BiOFREEZE, after getting up in the morning, is very soothing. My hip is very slowly improving. During this time I have been on 2 ml. of Prednisone.
My Rheumatologist has told me it may be necessary for me to take a low dose of prednisone the rest of my life.
Fortunately, after about three years on Prednisone, my bone density is OK. Also, the 4 pounds I gained are gone.
Staying active is a must.

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@virginiaj

I’m on my 3rd bout of PMR. I find the longer I have dealt with it, the less I understand it. I am now 76 and on 1.5 mg of pred. My first bout was when I was 57, after which it was in remission for 12 years.

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Have you tried any spot treatments that help? (Ice, heat,
creams, supplements, massage, etc.)
Any advice?

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I actually don’t have many problems if the prednisone dose is right. I have very sensitive skin so don’t do much topical stuff. The first rheumatologist I saw recommended doing range of motion exercise and avoid heavy weights. I go to an aerobics class with additional focus on balance and weight twice a week and walk on other days. My diet is balanced, 3 meals a day, healthy, but no special foods. I don’t eliminate any foods, but try for 5 servings fruit and veg, lean protein, more whole grains, less processed food, small dessert portions. My weight stays stabile. I reduce prednisone extremely slowly. The 2nd time, I had it, I tried to reduce dose quickly and it was back in 8 months. I don’t take supplements except a multi-vitamin when I remember.

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