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barbararene
@barbararene

Posts: 42
Joined: Feb 14, 2017

Polymyalgia 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: 1142
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: 42
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: 29
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

Posts: 42
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: 29
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: 42
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: 29
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.

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 1142
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

Posts: 29
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!

lynngweeney
@lynngweeney

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Joined: Oct 13, 2017
Posted by @lynngweeney, Thu, Oct 12 7:39pm

Thanks Barbara so much for sharing your story I have just read it out to my husband and he said omg that sounds exactly like you babe !! I am 57 and had just this last week been diagnosed with PMR I was extremely lucky as my doctor was switched on and started doing the blood tests etc as soon as I mentioned the symptoms I was having I am now on 10mg prednisolone and getting it under control. Thanks heaps for the information I now don’t feel so confused about it all regards Lynn from South Australia

lisp
@lisp

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Joined: Mar 30, 2016
Posted by @lisp, Fri, Oct 13 11:50am

I’ve just kept up walking 30 minutes, 2x day. No pain from that. I’m trying to ease back into pilates – where I can get muscle stiffness, but not the same pains as PMR before I started taking prednisone.

Posted by @kanaazpereira, Mon, Oct 16 8:42am

Welcome to Connect Lynn, @lynngweeney,

Thank you so much for sharing your story. May I ask what symptoms you had? Did the doctor tell you how long you have to be on Prednisone? We look forward to getting to know you.

jchatchett
@jchatchett

Posts: 6
Joined: Aug 11, 2016
Posted by @jchatchett, Mon, Oct 16 6:02pm

I had pain in arms and hips. My hands had so much pain, I couldn’t hold a plastic plate. I felt like someone was braking my bones. I have been on steroids July was a year ago. Today I ‘m on prednisone 5. I at 5 and when you get to 5 they do a test to check for inflammation. I took a really bad fall so they have to wait until I am free of inflammation. I was told that when you get to 5 you have to be careful so your adrenalin doesn’t shut down your organs. I know it’s scary especially when you start. I felt great but over time not so good. It has really helped. I was told some people never ever have this problem. I’m not sure which way I will go but I’m a positive person. Having cravings for sweets are the worst. I have gained 15 pounds. My doctor said it will come off when I am finished. The wait comes to your waist up. Good luck!

barbararene
@barbararene

Posts: 42
Joined: Feb 14, 2017
Posted by @barbararene, Tue, Oct 17 7:53am

I am 1 mg of prednisone currently. I know it is not a high enough dose, but I can manage. I say it’s not a high enough dose bc I still have a lot of pain in my neck and shoulders, especially in the mornings getting out of bed. I go to work at 5:30 am everyday, so I take 1/2 a tramadol at 5am hoping it will help a bit, then I take my 1 mg of tramadol.
I am walking about 20 minutes a day and trying to do a few stretches. I go see the rheumatoid Dr tomorrow and I will see what my inflammation levels are. I had lab drawn yesterday. Some days I feels really good and think, oh my, I’m healed and then the next day comes, and I’m like not!
I do have some fatty pockets around my lower neck and my research tells me it is from the prednisone. Each time I have tried to stop the 1 mg of prednisone, I can hardly move or walk and the bottoms of my feet feel a lot of pain.
What a mystery this illness is!

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