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barbararene
@barbararene

Posts: 16
Joined: Feb 14, 2017

Poly myalgia rheumatica

Posted by @barbararene, Mon, Feb 13 7:17pm

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

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John, Volunteer Mentor
@johnbishop

Posts: 418
Joined: Mar 22, 2016
Posted by @johnbishop, Mon, Feb 13 8:16pm

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

Posted by @kanaazpereira, Mon, Feb 13 9:46pm

Hello @barbararene,

I’d like to add my welcome to @johnbishop‘s who has shared some valuable experience; thank you John.
I’d also like to request @amkaloha, @jasonkwellls, @charlena, @bethog28, @sallyann, @nancestl, @sherw, @julied838, @madge, @cyndee, @selrahc, @Robert43DAP, @jchatchett, @maxmaximus3, to share their insight with you.

You may also be interested in reading this discussion – Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? http://mayocl.in/2c0mXSO

@barbararene, how do you manage your PMR beyond your medications?


barbararene
@barbararene

Posts: 16
Joined: Feb 14, 2017
Posted by @barbararene, Thu, Feb 16 6:56pm

Thanks John
It’s rare to find too many diagnosed w pmr.
I’m on 5mg a month,then decreAse every month until 0.
Didn’t work before.
Am trying again .


charlena
@charlena

Posts: 19
Joined: May 11, 2016
Posted by @charlena, Fri, Feb 17 5:28am

My husband is still on prednisone, it’s been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, “….. polymylagia rheumatica, if that is what you have, . .. .” Needless to say, we weren’t happy with that statement. Another of his doctors advises that my husband’s symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband’s symptoms and when I mention to his rheumatologist he doesn’t seem interested in other possibilities. Probably time for a new doctor.


barbararene
@barbararene

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Joined: Feb 14, 2017
Posted by @barbararene, Fri, Feb 17 6:15am

Let me share my story. I am 58 yrs old. I have always been really active by walking, biking, hiking, etc. February 2016 I started having some stiffness. I thought maybe it was stress related. Then it became worse and I had pain in my upper arms, thighs, neck, and buttock muscles. I couldn’t get an answer from a physician. They kept trying to dose me w rheumatoid arthritis.
I was on vacation in June and I met a lady who was describing her symtoms to me. She had just been diagnosed w PMR. Her symptoms were exactly the same as mine. I went back to my Dr and told her I believed I had PMR (I understand it’s hard to diagnose). She did some blood tests, found my inflammation factors to be high and the determining factor to diagnose was, immediately when I started taking the predisone, I felt completely healed. That was on 10mg. I read up on side effects of predisone and I don’t want to take the medication, but find that I can’t move wo it. I am now on 5 mg. I still have some pain and stiffness, but it is manageable. The dr wanted to put me on methaltrexate and I refused. It has been a year now. I find that stretching, even though it is painful and going for short walks helps. Some days I feel normal, but most days it is evident I have this stiffness. (I have named it the FRANKENSTEIN DISEASE)! I still get up and work every day until noon, and I try to get a couple of hours of rest each day. I am more tired than I use to be. I have read others stories that talk about people going into remission, so I am praying for that.
Barbara Rene’


charlena
@charlena

Posts: 19
Joined: May 11, 2016
Posted by @charlena, Fri, Feb 17 7:22am

Thank you, Barbara, for sharing your story. It always helps to know what symptoms others diagnosed with polymyalgia have. My husband’s symptoms are very similar to yours. His rheumatologist has only prescribed the prednisone. He would like to be able to bee off of it for periods of time, but when he decreases the doseage he can tell a HUGE difference within hours. He works every day 8-9 hours and is on his feet 99% of the time. He rarely complains but when he does I know he is in a lot of pain.
Charlena


barbararene
@barbararene

Posts: 16
Joined: Feb 14, 2017
Posted by @barbararene, Tue, Feb 21 8:41pm

We have to stay in touch and share what each of us finds that helps.
My goal is to keep moving, even when it’s difficult!


charlena
@charlena

Posts: 19
Joined: May 11, 2016
Posted by @charlena, Wed, Feb 22 6:11am

I am so happy that this forum is here! It always helps to meet and talk with others whose input is so valuable.
My husband works every day, I just wish I could get him to exercise more. He almost never complains, therefore when he
does complain, I know he is in terrible pain.


John, Volunteer Mentor
@johnbishop

Posts: 418
Joined: Mar 22, 2016
Posted by @johnbishop, Wed, Feb 22 9:47am

Exercise is one of the keys to PMR. I hated doing it but once you get into a routine and find one that is not too difficult or that causes more pain it’s not too bad. I bought a recumbent bike, elliptical combination and use it for 30 minutes when I first get up 5 to 6 days a week and then a few times a week I use it in the evenings for 30 minutes while watching the news. It’s easy for those that have trouble or don’t like walking because it has a larger seat and pedals so doesn’t cause joint pain. I also started using a therapy band to see if I can regain some strength in my hands, arms and shoulders.

Keep working on him to exercise!

John


charlena
@charlena

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Joined: May 11, 2016
Posted by @charlena, Wed, Feb 22 10:29am

Thanks, John, for the great info! I use a Pilates chair which can be used for several exercises. He has used this a few times. We also have therapy bands which I will try to get him to use- great idea!


John, Volunteer Mentor
@johnbishop

Posts: 418
Joined: Mar 22, 2016
Posted by @johnbishop, Fri, Feb 17 6:49am

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I’m a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I’m having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck – your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John


charlena
@charlena

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Joined: May 11, 2016
Posted by @charlena, Fri, Feb 17 7:16am

Thank you, John, for describing your symptoms. My husband does see a rheumatologist. Actually, he saw 3 other rheumatologists (all in Chattanooga, TN) before this one and none of them diagnosed anything. One even advised that on the second visit he would definitely have answers, then at the appointment said he had no idea…… This is why we see doctors at Emory and Vanderbilt, who have all been great! Just wish the rheumatologist would expand his mind….. Wish a Mayo clinic was nearer to us.


barbararene
@barbararene

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Joined: Feb 14, 2017
Posted by @barbararene, Fri, Feb 24 9:29am

It seems like almost all of my intense pain has moved to my feet. It is especially on the sides of my feet and some on the bottoms of my feet. Still have pain in shoulders and arms, but it’s like it has moved to my feet more. I am on 4 mg of predisone. I sure hate to increase the dose but don’t know about this. Any thoughts?


John, Volunteer Mentor
@johnbishop

Posts: 418
Joined: Mar 22, 2016
Posted by @johnbishop, Fri, Feb 24 12:13pm

Hello @barbararene – you are right, PMR is the Frankenstein disease. I’ve had the old man walk since my early 50s in the morning until my stiffness gets better. I think it’s not uncommon for PMR to start in hands, arms, & shoulders and show up later in the feet. I would contact your doctor or rheumatologist to discuss bumping up the prednisone a little. It also sounds like it could be a form of peripheral neuropathy which normally starts in the hands and feet. I don’t believe prednisone will help with PN – I know it does nothing for my small fiber peripheral neuropathy but I only have the numbness/tingling and not any pain.

4 mg prednisone is a very low dosage. My rheumatologist started me on 20 mg in Jan 2007. I was able to taper down the dosage and get off of the prednisone in 2010 when my PMR went into remission.

Let us know when you find out anything.

John


amkaloha
@amkaloha

Posts: 56
Joined: Sep 02, 2016
Posted by @amkaloha, Fri, Feb 17 9:26am

Hi Barbararene,
I have been meaning to write for a few days and finally have a few moments to myself! I was diagnosed with PMR on March 4, 2015 by my primary care doctor who is a D.O. and very much into natural healing as opposed to drugs. I remember when she said it, it looked like she had an epiphany! I guess she put it all together–my high inflammation markers and terrible pain across my shoulders and in my arms that wouldn’t go away. I was already on Tramadol but that did not help this. She said the standard drug for PMR is prednisone but she did not want to put me on it because of my higher glucose level. Most often it was near 120 and I was not on any medication, just controlled it with diet, so she didn’t want it to go higher or for me to have to take a drug.

There is a whole story as to how I came to the following, but I’ll spare you the details and just tell you that we found that methylprednisolone did not raise glucose levels as much as regular prednisone. So, after she tried me on Methotrexate (the ‘other’ drug of choice) and I got so sick on just one dose of it, she put me on the methylprednisolone 4 mg. I have been on this dosage from the beginning and have tried a few times to go lower by taking 1/2 pill one day then the whole pill for a few days, etc. I could never get to a lower dosage without my pain coming back. In fact, at the 4 mg dosage I still have a little pain in my arms especially when I get up in the morning and sometimes in the late afternoon but I’m not into raising the dosage.

I was wondering if anyone on here could tell me how long it has taken for them to go into remission. I know everyone is different, but I guess I’d like to know if there is some light at the end of this tunnel??? And, Barbara, I’m with you, I drink some wine also but have been thinking of giving it up to see if that helps.

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