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

@helpforpmr

I would like to know how many others have had a mysterious rash.

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@helpforpmr Mysterious rash most of the time on skin and on or in internal organs such as bladder, esophagus, stomach, etc. Looks like #, like a newly plowed field, with furrows running at 60 degree angles. Have been told it is Amyloid macular skin rash. Has been cut out of my larynx, skin and other areas, but always returns. Had it now for 40 years.

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@helpforpmr

I would like to know how many others have had a mysterious rash.

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Could you explain how I can send a private message to someone.  Each time I have tried it gives me a message that I have to choose one member … I typed in her connect name and that's what it prompted me to do.
Thank you.

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@helpforpmr

I would like to know how many others have had a mysterious rash.

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Hi @olegraymare – Here’s an example: I clicked on your Connect user name at the top of your post (first image). This took me to your profile screen (second image). I clicked the Send Private Message link at the bottom of your profile. This opened the Compose message screen with your Connect user name already filled in the Recipients: part of the message. Then all I have to do is type a Subject and then a Message and then click the Send button at the bottom. This sends a private email to the member who you selected by clicking on their user name. Try it by clicking on my name if you would like.

John

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@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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Hang in there. My understanding is low doses work well for pmr. Side effects sb mini mum at low doses. I’m on year 3. 3 mg of prednisone daily. I’m 50 yrs old.
I understand all the pain. I think the right amount of prednisone is the key. I also find trams doll helps me. It will get better. Be patient. Find what kind of exercise will work best for you. I work but have to have a couple hours rest a day. This is a puzzling illness.
Diets have not made any difference for me.

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@helpforpmr

I would like to know how many others have had a mysterious rash.

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So, I did that … I'm trying to send a message to a member who joined recently … I think it's helpwithpmr or similar.  Anyway, I did what you suggested and her name did not appear in the area where her Connect user name should appear.  It tells me "at least one member should be selected".  When I scroll down below in the list of names, her's is not there.  Nor is mine. 

Guess I'm missing something : 0
Thanks for all your help.  I am enjoying reading all the posts.  Once I get the hang of the web site, it will be much better.  I'm also getting a lot of posts for diseases I don't even know what they are !?  I thought I signed up for just PMR.?
Jan
P.S.  I think I saved some instructions that one of the mentors sent to me.  I'll read through those again.  The problem may not be on my end.  Maybe the helpwithpmr person has not done something on her end.?

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@helpforpmr

I would like to know how many others have had a mysterious rash.

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  I was finally successful.  I was trying to add her name under "Add New Recipients" and it wasn't working for me.  Thanks again for passing along all the great information (including how to use this valuable resource) !!

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I’m not sure how to respond here to each message I received, so forgive me if this is general. I don’t recall the dose of Prednisone I took for poison ivy. It was years ago. But it made by heart go into vt, break out in a sweat, head pound and body shake. It was awful. It was one of those packs you take 4 than 3 than 2 than 1. I have noticed the 5 mil of Prednisone recently prescribed for OMR so far has indeed minimized the pain. I am moving better and today I don’t feel the need to even take another pain aid like Tylenol. I couldn’t get thru the morning before without that assistance and a hot shower. So far so good. My doctor wants me to increase it to 10 mil but since it’s working so good at 5, I really don’t want to take the chance.

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@mymolly57

I’m not sure how to respond here to each message I received, so forgive me if this is general. I don’t recall the dose of Prednisone I took for poison ivy. It was years ago. But it made by heart go into vt, break out in a sweat, head pound and body shake. It was awful. It was one of those packs you take 4 than 3 than 2 than 1. I have noticed the 5 mil of Prednisone recently prescribed for OMR so far has indeed minimized the pain. I am moving better and today I don’t feel the need to even take another pain aid like Tylenol. I couldn’t get thru the morning before without that assistance and a hot shower. So far so good. My doctor wants me to increase it to 10 mil but since it’s working so good at 5, I really don’t want to take the chance.

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Hi @mymolly57 — That’s good news that the 5 mg dose of prednisone is working to help with the pain. Did you discuss your feelings with your doctor? I think it’s important to have that discussion to find out why he wants you to increase it when it’s working at the lower dose. I’m with you on not taking a higher dose than necessary. You really have to be your own advocate in your health care and be part of the decision making.

John

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@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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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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I’m sorry, I just figured out how to post to your reply. I don’t recall the dosage for the Prednisone since it was years ago. It was a four day treatment where you take four than three than two than one pill and I not only had SVT but sweating, shaking and lots of other unpleasant symptoms. I just started taking the 5 mi of Prednisone for OMR the other day and it already seems to be working with no side effects. The pain is not as severe, I was able to sleep well and I did not need Tylenol this morning. I’m hoping my Rheumatologist will not ask me to increase it to 10 since so far so good on the 5. Thanks for the information and for responding. It really helps to know I am not crazy and that this immune disorder is real. I also talked to my brother who went thru the same thing 5 years ago when he was diagnosed with Lupus. He could not walk to the mailbox without pain and now he just completed his 4th Triathlon. It’s good to know there is hope.

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@mymolly57

I’m not sure how to respond here to each message I received, so forgive me if this is general. I don’t recall the dose of Prednisone I took for poison ivy. It was years ago. But it made by heart go into vt, break out in a sweat, head pound and body shake. It was awful. It was one of those packs you take 4 than 3 than 2 than 1. I have noticed the 5 mil of Prednisone recently prescribed for OMR so far has indeed minimized the pain. I am moving better and today I don’t feel the need to even take another pain aid like Tylenol. I couldn’t get thru the morning before without that assistance and a hot shower. So far so good. My doctor wants me to increase it to 10 mil but since it’s working so good at 5, I really don’t want to take the chance.

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I am going to talk with her today. And your so right! No one knows our bodies like ourselves.

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@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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A itchy rash suggest an allergy to meds or food .I had a itchy rash when the Dr.prescribed Norco for me ,so he stopped it and it went away.Even though the Vicoden is in the same class of med.As Norco I could take this

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@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around “the pelvic girdle” is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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I believe i am the person you were looking for in your quest to send a private message. libbylea

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@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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Can anyone tell me if they have developed Giant Cell Arteritis?    I understand that can happen with PMR.     I am on vacation and am fearful it is happening.      Thank you for any input.

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@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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@sallygosse.

I’m tagging the following members who discussed Giant Cell Arteritis in a post to see if they can offer any input for you. @crhp194, @paulinef, @crhp194, @anya do you have any information you can share with @sallygrosse ?

Sally, can you share why you think you might have Giant Cell Arteritis?

Mayo Clinic has some information on their website for the symptoms of Giant Cell Arteritis here:
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

John

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