Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@noosat1

I too, was diagnosed with PMR in December. I am down to 5mg, for 2 weeks, and hope to go down to 4.5 soon. I am a little apprehensive, still a lot of stiffness in legs, although twice this week I have improved walking distance. This may not be a good time to expect too much as this is the hottest month of the year, and hotter than usual, about 100 degrees F. One whole mg. seems a drastic drop for you to do at that low stage. Lots of Luck from an Aussi in the Texas hill country.

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I was put on 30mg prednisone for one week, then went to 20mg for a week and then the dosage was lowered each week /month over 9 months. As well my rheumatologist has me on 200mg hydroxychlorquine sulfate. I was on 2 a day and went back to one a day. After 2 years felt poly was returning and went back to two a day. So far seems to do the work. Have CRP tested every 6 months with regular blood work. When first diagnosed it was 47.

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@kirby

I was put on 30mg prednisone for one week, then went to 20mg for a week and then the dosage was lowered each week /month over 9 months. As well my rheumatologist has me on 200mg hydroxychlorquine sulfate. I was on 2 a day and went back to one a day. After 2 years felt poly was returning and went back to two a day. So far seems to do the work. Have CRP tested every 6 months with regular blood work. When first diagnosed it was 47.

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Hi @kirby, Welcome to Connect. Thanks for sharing your PMR journey with us. It can be a difficult one. My PMR is currently in remission. The first occurrence lasted 3 years before I was able to taper off of prednisone. After a 6 year remission it came back and I started on 20 mg prednisone again and was able to taper off in 1-1/2 years. I'm hoping I get another 6 year break but will have to wait and see. I do think that exercise and diet do help. The diet part of eliminating foods that cause inflammation (and sugar!). I struggle with that but keep trying to focus on it.

Do you do any additional things to help relieve the symptoms of PMR?

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@johnbishop

Hi @kirby, Welcome to Connect. Thanks for sharing your PMR journey with us. It can be a difficult one. My PMR is currently in remission. The first occurrence lasted 3 years before I was able to taper off of prednisone. After a 6 year remission it came back and I started on 20 mg prednisone again and was able to taper off in 1-1/2 years. I'm hoping I get another 6 year break but will have to wait and see. I do think that exercise and diet do help. The diet part of eliminating foods that cause inflammation (and sugar!). I struggle with that but keep trying to focus on it.

Do you do any additional things to help relieve the symptoms of PMR?

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Water aerobics in a warm pool plus 10 minutes in a hot tub helps. I try to walk every day. I think diet also helps. I try to limit preservatives, red meat and alcohol. Sugar is the hardest but I agree important. Thank you for answering everyone’s questions. The Mayo site has been a huge help. 3 years ago I thought I had rotator cuff issues and my family doctor had never had a patient with poly rheumatica. I asked her to test for the CRP.

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@johnbishop

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I’m now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn’t want it to get out of hand. I don’t use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that’s how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

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Hi, Today our disease got some publicity in the 08/20/19 New York Times, science section, by Jane Brody, writer.
It’s good publicity but contains nothing you have not covered.
The 43 comments were interesting and one md mentioned several times we all should have been tested for a tick disease before going on prednisone? I never heard of this. If you give me an e-mail address, I will forward to you.
I was happy for spreading the word and maybe attracting some research $$ for PMR.

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@susieflamilngo

Hi, Today our disease got some publicity in the 08/20/19 New York Times, science section, by Jane Brody, writer.
It’s good publicity but contains nothing you have not covered.
The 43 comments were interesting and one md mentioned several times we all should have been tested for a tick disease before going on prednisone? I never heard of this. If you give me an e-mail address, I will forward to you.
I was happy for spreading the word and maybe attracting some research $$ for PMR.

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Hi @susieflamilngo — Thanks for pointer to the article. I found it so that others can also read it. Always good to see coverage like this.

Getting the Right Care for Painful Autoimmune Conditions
https://www.nytimes.com/2019/08/19/well/live/arteritis-autoimmune-conditions.html

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My rheumatologist had me on 30 mg for a week and then 20mg, then 15 for a month. I was on continuing lower doses for a month at a time for a year. Ask if you need higher doses to shut it down.

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You should find a functional/integrative medical doctor….they can run a test called ISAGENIX that will test for Lyme Disease….the one that is offered in regular medical centers is from the CDC and it does not test all types of Lyme. Please do this — it will help you. Also, read: https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health Best wishes!

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Hello @beckie, Welcome to Connect. Thank you for the private message. I thought I would answer your private message in this discussion so that other members can see your question and offer suggestions and share their experiences with you. Just click the View & Reply button on the email notification for this message and it will take you to the discussion.
———–
Beckie's message – I began my journey with orthopedic who did many tests, and diagnosed pinched nerve in lumbar area but could not determine why I was having such pain in shoulders and arms and neck. After lab work he referred me to rheumatologist who diagnosed PMR. After a week on prednisone I am sooo much better, I still have pinched nerve in back to deal with, but that pain is not nearly as bad as the PMR. Has anyone else experienced back surgery while dealing with sudden onset of PMR? This is all new to me. I'm just so thankful to the surgeon for going the extra mile to get me to rheumatologist. I had never heard of this disease before few weeks ago… Thanks for any advice you may have.
———–
First let me say I am really happy to hear your PMR is better since being on prednisone. Can I ask if your rheumatologist discussed tapering off of prednisone after you start feeling better? I've had 2 instances of PMR which is currently in remission. The first time it took about 3 years to taper off of prednisone. The second time it took about a year and a half. I do believe diet – eating healthier has helped me control the PMR some. There is also another discussion you may want to join that may be helpful for your pinched nerve in your back.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@artscaping @jenniferhunter and others may have some other suggestions on the back pain and pinched nerve.

Thanks for contacting me!

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@johnbishop

Hello @beckie, Welcome to Connect. Thank you for the private message. I thought I would answer your private message in this discussion so that other members can see your question and offer suggestions and share their experiences with you. Just click the View & Reply button on the email notification for this message and it will take you to the discussion.
———–
Beckie's message – I began my journey with orthopedic who did many tests, and diagnosed pinched nerve in lumbar area but could not determine why I was having such pain in shoulders and arms and neck. After lab work he referred me to rheumatologist who diagnosed PMR. After a week on prednisone I am sooo much better, I still have pinched nerve in back to deal with, but that pain is not nearly as bad as the PMR. Has anyone else experienced back surgery while dealing with sudden onset of PMR? This is all new to me. I'm just so thankful to the surgeon for going the extra mile to get me to rheumatologist. I had never heard of this disease before few weeks ago… Thanks for any advice you may have.
———–
First let me say I am really happy to hear your PMR is better since being on prednisone. Can I ask if your rheumatologist discussed tapering off of prednisone after you start feeling better? I've had 2 instances of PMR which is currently in remission. The first time it took about 3 years to taper off of prednisone. The second time it took about a year and a half. I do believe diet – eating healthier has helped me control the PMR some. There is also another discussion you may want to join that may be helpful for your pinched nerve in your back.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@artscaping @jenniferhunter and others may have some other suggestions on the back pain and pinched nerve.

Thanks for contacting me!

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Thanks so much for your quick reply. My rheumatologist did discuss tapering off prednisone to a maintenance level eventually, but I am still so new to the treatment we have not talked numbers..He started me with 20 mg per day. Finding this Connect has been so encouraging, and I appreciate your help. I think I have consulted "Dr. Google" too much as it gives such a dire outlook for long term prednisone. However at this point for me it is a miracle drug. I've never experienced anything like this. My story sounds so similar to other posts- age 69, active exerciser, then sudden crushing pain and weakness. I will have to wait and see what eventually is done about pinched nerve…At this point I just feel so blessed to out of that excruciating pain for the most part, though mornings are still bad. Thanks again.

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@beckie

Thanks so much for your quick reply. My rheumatologist did discuss tapering off prednisone to a maintenance level eventually, but I am still so new to the treatment we have not talked numbers..He started me with 20 mg per day. Finding this Connect has been so encouraging, and I appreciate your help. I think I have consulted "Dr. Google" too much as it gives such a dire outlook for long term prednisone. However at this point for me it is a miracle drug. I've never experienced anything like this. My story sounds so similar to other posts- age 69, active exerciser, then sudden crushing pain and weakness. I will have to wait and see what eventually is done about pinched nerve…At this point I just feel so blessed to out of that excruciating pain for the most part, though mornings are still bad. Thanks again.

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Good attitude Beckie I am having a return of PMR and trying hard to smile and keep happy
All the best to you Beryl

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@beryl

Good attitude Beckie I am having a return of PMR and trying hard to smile and keep happy
All the best to you Beryl

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Thank you Beryl. Pray for better days ahead. I'm new to this journey, and I can only imagine it's hard to keep from getting discouraged, especially with return episode…

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@beckie

Thank you Beryl. Pray for better days ahead. I'm new to this journey, and I can only imagine it's hard to keep from getting discouraged, especially with return episode…

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Thank you for your nice words. It has been a bit disheartening but we must keep our chins up Beryl

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Hello, John, I’m back again! Am now on 2.5 mgms Prednisone every other day and the PMR pain has returned…shoulders, neck, hips. As I phoned my rheumatologist yesterday and found out she is out of country, could you recommend anything that might help this pain???? I was told to take pain pills…Tylenol extra strength, 2 every six hours! Anything anyone could ‘throw in the pot’ would be gladly accepted!!!! Thanks.

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@beryl

Good attitude Beckie I am having a return of PMR and trying hard to smile and keep happy
All the best to you Beryl

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Hi @beryl, I, too, am having a return of PMR and the smiles and happiness are getting kinda thin!! My GP says that it’s only been since last Oct/18, but to me, it’s been sooooo long! I’d never heard of this awful disease…until I got it!!

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@dreamer38

Hello, John, I’m back again! Am now on 2.5 mgms Prednisone every other day and the PMR pain has returned…shoulders, neck, hips. As I phoned my rheumatologist yesterday and found out she is out of country, could you recommend anything that might help this pain???? I was told to take pain pills…Tylenol extra strength, 2 every six hours! Anything anyone could ‘throw in the pot’ would be gladly accepted!!!! Thanks.

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Hi @dreamer38, are you able to try splitting the dosage so that you are taking some prednisone daily rather than every other day? When I was tapering off of prednisone I was taking 1/2 mg prednisone each day until I was finally able to taper off. I don't think regular pain pills work for PMR at least they never helped me or I would have never needed to start on prednisone. You could call your pharmacist and ask them and if you have enough pills until your rheumatologist gets back I would definitely do daily and not every other day.

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