Polymyalgia Rhuematica

I have been on prednisone for PMR for 2 years and tried to lower it. I was at 1 mg and then tried to go to 1/2 mg . Then I got symptoms of GCA so l’m back to 10 mg. I was told that I should gradually go down but when I get to 1 mg again to stay at that dose for 6 months. I know a lady who was on it for 10 years.

Thank you for your posting. I don't know what GCA is. Do you ever feel that your doctor has diagnosed you with PMR because he/she isn't really sure what you have going on and PMR is just a "catch all" disease to categorize you with?

No. My doctor is pretty well up to date. My mothet had pmr as well so I know that’s what I have. GCA (giant cell arteritis) is present in 20% of those with PMR. You should google it.
What are your symptoms?

My husband's entire body aches, he has joint stiffness. These issues disappeared within an hour's time with his first dose of prednisone. He also has an elevated CPK level which, from what I understand, is not a symptom of PMR. This is the issue that concerns us and makes us think that PMR may not be a correct diagnosis.....

I would get a second opinion. Did he check your esr and crp

He has checked them only one time, I believe, in 3 years.

Hi @charlena,

I recently was able to taper off of prednisone for my second occurrence of PMR. The first time I was on prednisone starting at 20 mg for 3 years until I was able to taper off. The last 6 months I went between 1 mg and 1/2 mg dosage before I was able to get off of it. This second occurance of PMR has been a little better. I was able to get off prednisone after about a year and a half. The last 3 months going back and forth between 2.5 mg and 1 mg until I could stop taking it. The first diagnosis was by a Mayo rheumatologist. The second was by the doctor with my input ☺. He did check me for the Giant Cell Arteritis (GCA) but I didn't have it. The Mayo Clinic website has more info on GCA here:

-- https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

Here is some information on the Creatine Kinase (CPK or CK), Serum test from the Mayo Medical Laboratories:
-- https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8336

I'm also tagging other members who have posted questions about the CK test to see if they can offer any suggestions. @camedina, @anon41056905, @camedina do you have any suggestions or information that you can offer @charlenacharlena?

John

John, thank you for the response. What were/are your symptoms with PMR? Do you have an elevated CPK level?

Hi @charlena, my PMR symptoms are mostly joint pain and stiffness in my arms, shoulders, hands and legs. I still have a little joint pain and stiffness but no where near what it is when the PMR is active. I had some labs done and the test my doctor used was the C-reactive protein (CRP) which checks for inflammation. The test came back in the normal range so he didn't think I had GCA. I also didn't have the other symptoms associated with GCA - tender scalp, jaw pain, double vision and a few others he thought were indicators. I do have some fatigue though which is one of the symptoms. I try to keep a regular exercise routine to help with the PMR, nothing extreme but anything you can do helps with PMR. The Arthritis Foundation has some good information on exercise. My rheumatologist described PMR to me as arthritis all over the body and it does feel like it to me.

-- https://www.arthritis.org/living-with-arthritis/exercise/

John

Hi, @charlena. My poor mother, who died in 2004, suffered for 20 years but I am not sure which was worse, whatever disease she had (if it really was polymyalgia rheumatica) or the "treatments" for it. My mom became sick after she and my dad returned from a long-awaited retirement trip. Her muscles, especially in her arms and shoulders, ached. She visited several specialists in her area over a few years and then went to top national specialists. The first one told her she had enzyme leakage. But that doctor's visit was followed by another who said she had PMR. She was given gold shots until they started to affect her liver. She was checked for giant cell arteritis, which she did not have. She was put on prednisone with ever higher doses. Whenever she tried to reduce it, she would be in more pain. She got the "moon face" typical of long-term high doses of prednisone and was embarrassed by it. Her skin became paper thin and started to bruise easily. What was weird was that the specialist hospital she went to never mentioned the first doctor's enzyme leakage idea and no one would talk about it since it had been concluded that PMR was what she had. If she were still here, I would try to persuade her to check out other possibilities both for another possible cause and for a less harmful "treatment" than prednisone which suppressed her immune system. It looks like prednisone does work for some folks with PMR such as John. That is great and encouraging. Perhaps my mom's dosage was not sufficiently managed or maybe she didn't even really have that. My thoughts are with you. I hope your husband finds relief soon.