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@johnbishop

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

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Replies to "Hello @charlena, my symptoms are shoulder and arm pain/tingling. I'm a side sleeper and was waking..."

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.

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?

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

My primary care physician diagnosed me. Then sent me to s rheumatologist.

John I had the tingling in arms ,hands At night instead of laying on a pillow I just lay on bed ,when I removed the pillow tingling stopped.Try it see if it works for you

question: i have both RA and PA yet for some reason i do not have stiffness when waking up. I do appreciate this but curieosity opens it’s eyes. The stiffness seems to be expected. I do have much stiffness when the pain, swelling and cramping comes into being which seems to be happening much more often as time goes bye.

Well tingling in hands & arms are normal for older people why I don’t know but my Dr. said it is common as long as it goes away when changing sleeping positions so no need to worry about it & it is not PMR related.

Thanks @lioness – I normally am a side sleeper and have to use a pillow, can’t sleep on my back. I do try to make sure I keep my arm and hands not under the pillow … which like you say gives you some pins and needles.

Hi Peach @peach414144, I’ve forgotten what it feels like to not have stiffness when I wake up. ☺ That’s really the reason I try to ride my exercise bike for 30 minutes when I first get up in the morning…it loosens up the joints. Of course I have to feed the pets first or would have to listen to some aggravating noises until I stopped and fed them.

yes, i think the animals keep us going. on. the responsibility for them gives us another reason to enjoy life for them and for us. (2 cats and 2 dog)

Hi John I sleep on my side but use a small pillow .Almost like a rolled up towel

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