PMR Anyone?

Posted by olegraymare @olegraymare, Jan 4, 2018

I was diagnosed with polymyalgia rheumatica about a year ago. I WAS a very active 69 year old female all of a sudden, not being able to get out of bed on her own and having severe hip flexor pain. As is customary, after waiting 3 months to see a rheumatoid arthritis doctor, she administered the C-reactive protein test and I was VERY high. So, she diagnosed me with PMR and prescribed 15 mg of prednisone. I don’t like taking meds (as most of us don’t), but I was in pain and had no quality of life. I’m a swimmer and could hardly dog paddle ! One year later, I have been weaning off the 15 mg down to 1 mg. My RA said that now it’s a matter of determining if I have PMR or arthritis … so, she prescribed 7.5 mg of meloxicam for a month. I will say my shoulder pain seems better, but my hip flexors are awful !! I don’t want to go back on steroids – the devil drug. I would like to get to the “crux” of what is CAUSING my inflammation??? No doctors seem to address that? What would be my next step? A nutritionist? I am leary of taking supplements, as well. Thank you for any help or sharing your experience. Weird disease … I just want my old life back – being able to move without pain, etc. Too much to ask?

@charlena

Is there anyone in this group that was initially diagnosed with PMR and, after several years of not being able to lower prednisone dosage, been diagnosed with ANOTHER ILLNESS?
My husband was diagnosed with PRM 4 years ago and prescribed prednisone. He has tried many times to decrease the prednisone, but each time he has the severe all over body aching returns within 30 minutes of lowering his dosage. (he is on 5 mg bid) His rheumatologist has now expressed concern about his long term usage of the prednisone and has now put him on Hydroxychloroquine (plaquenil) which he has taken before and had to quit due to extreme fatigue. Doctor also mentioned methotrexate but decided against prescribing it due to husband's elevated liver count.
Thank you for any and all replies.

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Thank you John for getting this moved to another discussion for more views- what is this discussion thread under? He takes 5 mg, one in a.m. & one in p.m. He is now taking 1 in a.m. & 1/2 in p.m. On visit to rheumatologist last week he ordered a lot of bloodwork. Not sure what he is looking for…..

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@charlena

Thank you John for getting this moved to another discussion for more views- what is this discussion thread under? He takes 5 mg, one in a.m. & one in p.m. He is now taking 1 in a.m. & 1/2 in p.m. On visit to rheumatologist last week he ordered a lot of bloodwork. Not sure what he is looking for…..

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Hi @charlena — the discussion thread PMR Anyone? is under the same Autoimmune Diseases group but has a lot of activity and posts on PMR. I'm guessing that there are a lot of members with PMR that also have other autoimmune diseases. It could be that his rheumatologist is looking for inflammation indicators. I would give the rheumatologist a call and ask. I think it's helpful to know as much as you can about it.

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@charlena

Is there anyone in this group that was initially diagnosed with PMR and, after several years of not being able to lower prednisone dosage, been diagnosed with ANOTHER ILLNESS?
My husband was diagnosed with PRM 4 years ago and prescribed prednisone. He has tried many times to decrease the prednisone, but each time he has the severe all over body aching returns within 30 minutes of lowering his dosage. (he is on 5 mg bid) His rheumatologist has now expressed concern about his long term usage of the prednisone and has now put him on Hydroxychloroquine (plaquenil) which he has taken before and had to quit due to extreme fatigue. Doctor also mentioned methotrexate but decided against prescribing it due to husband's elevated liver count.
Thank you for any and all replies.

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Thanks, John. I always review his labs. It's very odd, I don't believe his SED rate has ever been very high. He also has an elevated CPK level (he has had this for a number of years). Our dermatologist, who also treats patients with PMR, advises that none of his PMR patients have an elevated CPK level. He seems to indicate worry about this….. However, the rheumatologist doesn't seem concerned.

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@charlena

Thanks, John. I always review his labs. It's very odd, I don't believe his SED rate has ever been very high. He also has an elevated CPK level (he has had this for a number of years). Our dermatologist, who also treats patients with PMR, advises that none of his PMR patients have an elevated CPK level. He seems to indicate worry about this….. However, the rheumatologist doesn't seem concerned.

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I think they look at elevated CPK levels to check for myopathies according to the CPK test – https://www.mayocliniclabs.com/test-catalog/Overview/8336

Here's some more information that may be helpful.

American College of Rheumatology – Inflammatory Myopathies
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Inflammatory-Myopathies
NIH – Myopathy Information Page
https://www.ninds.nih.gov/Disorders/All-Disorders/Myopathy-Information-Page

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Is there anyone in this group that was initially diagnosed with PMR and, after several years of not being able to lower prednisone dosage, been diagnosed with ANOTHER ILLNESS?
My husband was diagnosed with PRM 4 years ago and prescribed prednisone. He has tried many times to decrease the prednisone, but each time he has the severe all over body aching returns within 30 minutes of lowering his dosage. (he is on 5 mg bid) His rheumatologist has now expressed concern about his long term usage of the prednisone and has now put him on Hydroxychloroquine (plaquenil) which he has taken before and had to quit due to extreme fatigue. Doctor also mentioned methotrexate but decided against prescribing it due to husband's elevated liver count.
Thank you for any and all replies.

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Hi @charlena you may have noticed I moved your post to the discussion @johnbishop mentioned so that your post can get more visibility. Simply click VIEW & REPLY in your email notification to get to your post.

Did your rheumatologist give an idea of when your husband's bloodwork will be back?

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Thanks, John. I will check these out!

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I’m in the same boat you’re in. I’m 65 and last year I began with excruciating pain in both biceps. I had no idea what could be wrong. Saw family doctor who did the bloodwork. Sent me to Rheumatologist who feels it’s PMR. I’ve been on prednisone now for over 1-1/2 years. 30 mg all the way down to 1 mg.
I don’t feel pain in legs or hips until recently. May be due to prednisone for so long? I can only guess. I’ve almost weened off prednisone last May, however I had rotator tear surgery in May which through me back to 4 mg prednisone.
I’m still not convinced I have PMR as my bloodwork hasn’t been out of range for a long time. I just want to stop taking prednisone. I now have high blood pressure as well as weight gain.
I’m a mess and feel depressed with all of this in the last 2 years ( close to it anyway).

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@susanski

I’m in the same boat you’re in. I’m 65 and last year I began with excruciating pain in both biceps. I had no idea what could be wrong. Saw family doctor who did the bloodwork. Sent me to Rheumatologist who feels it’s PMR. I’ve been on prednisone now for over 1-1/2 years. 30 mg all the way down to 1 mg.
I don’t feel pain in legs or hips until recently. May be due to prednisone for so long? I can only guess. I’ve almost weened off prednisone last May, however I had rotator tear surgery in May which through me back to 4 mg prednisone.
I’m still not convinced I have PMR as my bloodwork hasn’t been out of range for a long time. I just want to stop taking prednisone. I now have high blood pressure as well as weight gain.
I’m a mess and feel depressed with all of this in the last 2 years ( close to it anyway).

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Hi @susanski — Welcome to Connect. The pain from PMR can be excruciating and I too was pretty depressed the first time around. I've had two occurrences of PMR. The first one lasted a little over 3 years before I was able to taper off of prednisone and it was an up and down battle most of the way. I also gained a lot of weight, can't remember the exact amount but it was close to 50 lbs. The second time around was 6 years after I tapered off of prednisone for the first occurrence of PMR. I was able to keep the weight down to 5 to 10 lbs only because I knew I had to change eating habits so that I didn't gain the extra weight.

Each of us I think are a little different when it comes to the way PMR affects us but one thing that helped me was to make some diet changes. I didn't always adhere to the diet but did my best and tried to do some mild exercise but not too much each day if possible.

Here's some information that may be helpful.
Medical News Today – What to eat if you have polymyalgia rheumatica
https://www.medicalnewstoday.com/articles/321683.php

I don't think the prednisone will cause pain in the legs but then I have no medical background or training. My rheumatologist explained PMR to me as arthritis all over the body. When I was first diagnosed I had to use a walker going to the appointment and was unable to drive. My legs were in pain as well as arms, hands and shoulders. I was put on 20 mg prednisone after the appointment with the rheumy in the morning and went back for an afternoon appointment and didn't need the walker. So it was the miracle drug for me.

Has your doctor or rheumatologist given you any suggestions to help with the high blood pressure or new symptoms of leg pain?

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@susanski

I’m in the same boat you’re in. I’m 65 and last year I began with excruciating pain in both biceps. I had no idea what could be wrong. Saw family doctor who did the bloodwork. Sent me to Rheumatologist who feels it’s PMR. I’ve been on prednisone now for over 1-1/2 years. 30 mg all the way down to 1 mg.
I don’t feel pain in legs or hips until recently. May be due to prednisone for so long? I can only guess. I’ve almost weened off prednisone last May, however I had rotator tear surgery in May which through me back to 4 mg prednisone.
I’m still not convinced I have PMR as my bloodwork hasn’t been out of range for a long time. I just want to stop taking prednisone. I now have high blood pressure as well as weight gain.
I’m a mess and feel depressed with all of this in the last 2 years ( close to it anyway).

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I have been on prednisone for three years–I am sorry to say. My PMR included neck, shoulders, biceps, hips, and thighs before a diagnosis was made. I, too, was initially treated with a 30 mg dosage of prednisone. Like, John, my response to the prednisone was a miracle. I was pain free within four or five hours. By the time I had tapered to about 10 mg, the symptoms began returning. I recognized the symptoms for what they were. My doctor, however, thought the PMR was in remission because all of the lab work was normal. This cycle lasted for a year and until I was taking 1 mg of prednisone daily.

In desperation, I went to the Mayo Clinic. I learned that about 40% of PMR patients do not go into remission and that about 10% of the patients will have normal lab work. I began taking prednisone again, and the pain went away.

While I am not a medical professional, the fact that pain is now in your hips and legs suggests that you are in a PMR flair. You might explore this with your physician.

FYI, I hate prednisone's side-effects. For me mobility and quality of life have been important enough to continue the prednisone and fight the side effects. I think I have had every side-effect prednisone has to offer. It is no fun. This decision is, of course, an individual and personal decision.

Good luck to you as you seek a solution to your health problem.

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@charlena

Is there anyone in this group that was initially diagnosed with PMR and, after several years of not being able to lower prednisone dosage, been diagnosed with ANOTHER ILLNESS?
My husband was diagnosed with PRM 4 years ago and prescribed prednisone. He has tried many times to decrease the prednisone, but each time he has the severe all over body aching returns within 30 minutes of lowering his dosage. (he is on 5 mg bid) His rheumatologist has now expressed concern about his long term usage of the prednisone and has now put him on Hydroxychloroquine (plaquenil) which he has taken before and had to quit due to extreme fatigue. Doctor also mentioned methotrexate but decided against prescribing it due to husband's elevated liver count.
Thank you for any and all replies.

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I have had PMR for three years. I have consulted four rheumatologists and three orthopedists in addition to my PCP. My initial treatment was 30 mg of prednisone. It was miraculous. Within about 4-5 hours I was pain free. When I had reduced the dosage to about 10 msg, the pain began returning. My doctor thought the PMR was in remission because all of the lab work was normal after the first four months torso. Because the pain worsened with each reduction in prednisone, I finally sought and obtained an appointment at the Mayo Clinic. I learned that about 40% of PMR patients do not go into remission and that about 10% will have normal lab work. Prednisone was again prescribed and the pain went away.

After my visit to Mayo, I found it took 12.5 mgs of prednisone to alleviate the pain. Unfortunately, I have been able to reduce it to only 11.5 mgs, but my goal is to keep reducing it until it is much lower than 11.5 mgs. This I can tell you, one's body responds to as little as a .5 mg dosage. I tried 11 mgs for one month and had to move back to 11.5 mgs. I will wait a month and then try again to lower the dosage to 11 mgs.

John Bishop mentioned in his posts that it took him a year of moving between 1 mg and 1/2 mg before he finally got off prednisone. Knowing that .5 mg dosage could impact my body was most helpful. It has given me hope to keep trying.

I will tell you that the doctor at Mayo told me that she had some patients who had not been able to reduce their dosage of prednisone to less than 7 mgs.

I, too, am concerned about long-term use of prednisone, but I do like being able to stand, walk, and use my arms.

FYI, I did ask about methotrexate, and she told me that it had not been effective in her treatment of PMR. So . . . I am taking the prednisone and fighting all of its side-effects.

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@charlena

Is there anyone in this group that was initially diagnosed with PMR and, after several years of not being able to lower prednisone dosage, been diagnosed with ANOTHER ILLNESS?
My husband was diagnosed with PRM 4 years ago and prescribed prednisone. He has tried many times to decrease the prednisone, but each time he has the severe all over body aching returns within 30 minutes of lowering his dosage. (he is on 5 mg bid) His rheumatologist has now expressed concern about his long term usage of the prednisone and has now put him on Hydroxychloroquine (plaquenil) which he has taken before and had to quit due to extreme fatigue. Doctor also mentioned methotrexate but decided against prescribing it due to husband's elevated liver count.
Thank you for any and all replies.

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Sorry. I did not note the date of your post.

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Hi Pauletta I to have had PMR going on 4 years now I started on 20 mg of prednisone & have worked myself down to 2.5 mg/day & on occasions depending on the weather conditions & have to pop a 5 mg. I also have heard that some patients never go into remission not to encouraging I must say. The secrete is keep active I myself do a lot of gym work I also am a cyclist & in the winter months I down hill ski I also enjoy my motorcycle. My blood work up is good but still have pain in my fingers but not the thumbs strange also pain in my wrist my shoulders & neck. Oh I am also 78 & refuse to give up staying active is the secret we must work through our ailments. Roland

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Hi all, well Im back again to ask some advice. I had reduced my dosage down to 1mg and was feeling okay, then I had what I thought was a relapse but after upping my meds it mad no difference and the pain was different, I think you said John that you thought it may be something else and yes it was. I had a trapped nerve and had to wait for it to heal. Thats when I decided to drop the 1mg to see how I would go, I have been off the prednisone for nearly a week now and my whole body aches like having the flu, I am also very stiff if I sit too long and getting going is a bit of a task, I am really tired most of the time with very little energy. Is this my PMR or withdrawals from the meds. I could really do with some guidance.

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@lindapc

Hi all, well Im back again to ask some advice. I had reduced my dosage down to 1mg and was feeling okay, then I had what I thought was a relapse but after upping my meds it mad no difference and the pain was different, I think you said John that you thought it may be something else and yes it was. I had a trapped nerve and had to wait for it to heal. Thats when I decided to drop the 1mg to see how I would go, I have been off the prednisone for nearly a week now and my whole body aches like having the flu, I am also very stiff if I sit too long and getting going is a bit of a task, I am really tired most of the time with very little energy. Is this my PMR or withdrawals from the meds. I could really do with some guidance.

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Hello @lindapc — I have no medical training or background but my experience with PMR is that if it’s still active and you stop the prednisone the pain will probably return.

Ache is a good way I would describe the pain I have when my PMR was active. I’m guessing a pinched nerve would cause pain in a specific area whereas PMR is mor likely all over the body/joints.

It’s not uncommon to have multiple conditions so it might be good to try upping the prednisone again a little to see if the pain/aches get better. Are you able to discuss your symptoms with your rheumatologist?

Sorry to hear your pain came back — hoping you can find the answer soon.

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