Hello fellow pappers, I have just recently been diagnosed with Polymyalgia Rheumatica (PR). Started a regimen of 15mg oral prednisone a week ago. I don't know if there are any PR forums out there so I thought I would come here and ask if anyone has been diagnosed and what their experiences were/are. Thanks to any who take the time to respond.
Cheers
Travis
OT: Polymyalgia Rheumatica
6 posts
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travismcgee
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- Joined: Mon Jan 07, 2008 7:28 am
- Location: minnesota
OT: Polymyalgia Rheumatica
"The major difference between a thing that might go wrong and a thing that cannot possibly go wrong is that when a thing that cannot possibly go wrong goes wrong it usually turns out to be impossible to get at or repair."
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Re: OT: Polymyalgia Rheumatica
Travis,
I was diagnosed with this 6 years ago, the prednisone works I take 3mg a day and have no problems. My doctor told me that I would probably be on pred always he said it really doesn't go away. Small price to pay for being able to move. It is an autoimmune disease and I do have another that I also deal with. If you have any questions feel free to pm me.
Good Luck
Eileen
I was diagnosed with this 6 years ago, the prednisone works I take 3mg a day and have no problems. My doctor told me that I would probably be on pred always he said it really doesn't go away. Small price to pay for being able to move. It is an autoimmune disease and I do have another that I also deal with. If you have any questions feel free to pm me.
Good Luck
Eileen
Re: OT: Polymyalgia Rheumatica
There is a Canadian Arthritis site that has information about Polymyalgia Rheumatica. On that site there is a discussion forum and one of the boards is devoted to this type of arthritis. I go to that forum quite often because I have Rheumatoid Arthritis. You may be interested in checking it out. The website is http://www.arthritis.ca.
I don't know if there is a comparable forum on the American Arthritis site or not. I think it is called the Arthritis Foundation in the US.
Good luck!
I don't know if there is a comparable forum on the American Arthritis site or not. I think it is called the Arthritis Foundation in the US.
Good luck!
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fedupwithit
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Re: OT: Polymyalgia Rheumatica
Hi
Finally a topic I have experience with(but not alot) that I can comment on!!
About two years ago I was diagnosed with PMR. My WHOLE body was in PAIN!!! OMG! When it was finally diagnosed they had me start at 20mg pred every day and every two/three weeks or so had me reduce the daily pred mg's a little bit. The initial pain relief was incredibly good and it kept getting better. I finally got down to half a mg or so a day and the pain was completely gone so the regimen was stopped. I have not had any pain since I have stopped taking the pred... and hopefully it will not come back!!!!!!
If you are wondering if the therapy is going to work, it DOES! At least for me. Hang in there
Chris
Finally a topic I have experience with(but not alot) that I can comment on!!
About two years ago I was diagnosed with PMR. My WHOLE body was in PAIN!!! OMG! When it was finally diagnosed they had me start at 20mg pred every day and every two/three weeks or so had me reduce the daily pred mg's a little bit. The initial pain relief was incredibly good and it kept getting better. I finally got down to half a mg or so a day and the pain was completely gone so the regimen was stopped. I have not had any pain since I have stopped taking the pred... and hopefully it will not come back!!!!!!
If you are wondering if the therapy is going to work, it DOES! At least for me. Hang in there
Chris
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travismcgee
- Posts: 93
- Joined: Mon Jan 07, 2008 7:28 am
- Location: minnesota
Re: OT: Polymyalgia Rheumatica
Thanks everyone for your replies. I really do appreciate the time people take to respond to others on this wonderful site, regardless the topic. Hawthorne I will give the site you mentioned a look over, http://www.arthritis.ca, and fedupwithit and Murphy thanks for the encouraging words.
Travis
Travis
"The major difference between a thing that might go wrong and a thing that cannot possibly go wrong is that when a thing that cannot possibly go wrong goes wrong it usually turns out to be impossible to get at or repair."
Douglas Adams
Douglas Adams
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BobRushton
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- Joined: Sat Feb 16, 2019 7:35 am
Re: OT: Polymyalgia Rheumatica
Hi ,
I think there is a connection between my use of Cpap and being diagnosed with PMR. (Polymyalgia rheumatica)
Firstly the symptoms of PMR dont have any blood markers that are usual.
It started in the week commencing 28th Sept 2018. Immediately after having my annual Cpapc sesion at the hospital.
The technician said to me its now policy to" zap the machine on to full as why wouldn't you." ?
Now the cpap pushes me in to breathing, if i take it off I carry on heavy breathing.
Ive found that if i wake up at or before 5 am i dont have the sever PMR symptoms, but if i go back to sleep with the CPap on i wake at 8 am, breathing heavily and in utter agony around the shoulders and hips. cant get out of bed. It takes until 2 pm for it to ware off, stops me working and driving , utter agony.
Last night I wok at 6.15 am went to the loo, pain not too bad, went back to bed but did not put the mask back on, felt much better when i woke at 8 am...
Is this atype of Hyperventilation? has anyone else had these problems?
Ps the steroids, prednisolone, make little difference..
BOB
I think there is a connection between my use of Cpap and being diagnosed with PMR. (Polymyalgia rheumatica)
Firstly the symptoms of PMR dont have any blood markers that are usual.
It started in the week commencing 28th Sept 2018. Immediately after having my annual Cpapc sesion at the hospital.
The technician said to me its now policy to" zap the machine on to full as why wouldn't you." ?
Now the cpap pushes me in to breathing, if i take it off I carry on heavy breathing.
Ive found that if i wake up at or before 5 am i dont have the sever PMR symptoms, but if i go back to sleep with the CPap on i wake at 8 am, breathing heavily and in utter agony around the shoulders and hips. cant get out of bed. It takes until 2 pm for it to ware off, stops me working and driving , utter agony.
Last night I wok at 6.15 am went to the loo, pain not too bad, went back to bed but did not put the mask back on, felt much better when i woke at 8 am...
Is this atype of Hyperventilation? has anyone else had these problems?
Ps the steroids, prednisolone, make little difference..
BOB
6 posts
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