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charlena
@charlena

Posts: 41
Joined: May 11, 2016

Polymyalgia Rhuematica

Posted by @charlena, Mon, Apr 16 12:57pm

My husband has had this issue for about 3 years now. His doctor prescribed Prednisone. I have seen posts here where people have been able to lower their prednisone dosage and even get off it entirely. Some people have posted about being in remission. My husband has tried several times to lower his dose but within a day's time is once again having level 10 pain. I would appreciate some posts from others that may be struggling to be able to lower their dosage. Also, posts from others that are in remission and how long between onset of illness and remission. I am beginning to think he may have some disease other than polymyalgia rheumatica. I look forward to reading your posts. Thank you.

REPLY

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?

@charlena

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?

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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…..

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@charlena

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…..

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

Liked by Dee

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

Liked by Dee

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?

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@charlena

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

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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

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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.

I have had PMR for 13 years. It took some time and trips to various doctors to be correctly diagnosed. After having PMR for about 2 years I was in a study through the Mayo Clinic in Rochester for a short time. I would give myself a shot once every week. With the shot I never felt so good. The shot did have one side affect – a day of combined vomiting and diarrhea. With that side affect the study was discontinued.
I gradually weaned down to 5mg from 20mg of prednisone. After close to 10 years of PMR, I weaned myself down to 1mg of prednisone thinking that prednisone would be a thing of the past.
About a month ago a had a BIG flare-up and I am now back on 20 mg of prednisone and feeling like I did when it all started. I have been through the various side effects of prednisone, the worst for me being – weight gain, irritability, and insomnia. Fortunately, I had very strong bones at the start since the prednisone has slowly been giving me osteoporosis. I also, make sure I get into a swimming pool for exercise at least three times a week.

@edithmiller

I have had PMR for 13 years. It took some time and trips to various doctors to be correctly diagnosed. After having PMR for about 2 years I was in a study through the Mayo Clinic in Rochester for a short time. I would give myself a shot once every week. With the shot I never felt so good. The shot did have one side affect – a day of combined vomiting and diarrhea. With that side affect the study was discontinued.
I gradually weaned down to 5mg from 20mg of prednisone. After close to 10 years of PMR, I weaned myself down to 1mg of prednisone thinking that prednisone would be a thing of the past.
About a month ago a had a BIG flare-up and I am now back on 20 mg of prednisone and feeling like I did when it all started. I have been through the various side effects of prednisone, the worst for me being – weight gain, irritability, and insomnia. Fortunately, I had very strong bones at the start since the prednisone has slowly been giving me osteoporosis. I also, make sure I get into a swimming pool for exercise at least three times a week.

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Hello Edith @edithmiller, It sounds like your PMR has been a long and painful ordeal. I have had 2 episodes of PMR. The first one went into remission after 3 years of prednisone starting with a dosage of 20 mg and the last six months or so going back and forth between 1 mg and 1/2 mg until I was able to taper off of the prednisone. Weight gain was my biggest problem the first time around. After 6 years of remission, it reared it's ugly head again and I went back on prednisone starting with 20 mg again. The second episode lasted a little less than 2 years and I was able to taper off at the end of February this year. I didn't have as much of a problem with the weight gain this time around as I was also diagnosed with small fiber peripheral neuropathy before the PMR came back and I started making lifestyle changes with my diet. I did this as a result of hearing about the Wahls Protocol and reading Dr Terry Wahls story which is pretty amazing. She was able to use nutrition to reduce her symptoms of MS. You can read more about her here if you want – https://terrywahls.com/about/about-terry-wahls/.

I think you have a good approach by using swimming pool exercise to keep your strength up. As painful as it can be exercise is a key to helping PMR as long as you don't over do it. I also have osteopenia. Have you tried any other physical therapy or exercises?

John

I switched from prednisone to Plaquenil and it has helped me.

@jleem

I switched from prednisone to Plaquenil and it has helped me.

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Hello @jleem, I see that you have recently joined Connect and I would like to welcome you. Currently my polymyalgia rheumatica (PMR) is in remission and I no longer have to take prednisone.

Do you have PMR also?

John

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