Hello again,
I have a couple of questions...
First of all, have any of you noticed that your PMR gets worse after being out in the sun? Is this something we should avoid? Yesterday it was finally sunny here in NW Montana and I laid in the hammock for awhile. Today I feel worse. Is it the prednilisone or the PMR or totally unrelated to either? Sometimes this is so confusing.
Also, I received my copy of "You are not alone" from the PMR&GCA UK North East Support Group. Thank you so much for making this DVD. I got teary watching it and hearing and seeing others that have this disease. I've never met anyone else that has PMR and it really did help me to not feel so alone.
My rheumy has told me that PMR is an autoimmune disease where the white blood cells attack the joint linings of the shoulders and hips, which is where my pain and stiffness originated. I had an elevated CRP and ESR, as well. In the DVD the doctors talked about the problem being in the muscles rather than the joints. Can anyone out there clarify this for me?
Thanks in advance for any light you can shed. Wishing you all pain-free days.
Gentle hugs,
JannieWell I am new to this site only being dx as of Feb 2010 I don't know about the sun making symptoms worse I find that fatigue and flare up days seem to happen independent of anything except perhaps not enough rest. I work nights and sometimes on my first day off I will go without sleep when I should be resting but as you all know when you feel good you want to be out in the world doing something. I did however post a question about hot humid weather which I normally love now I'm starting to experience extra fluid retention in my knees and hands and wrists. Your doctors were correct when they said that the white blood cells attack the synovial lining of the joints but I read somewhere thankfully there is no permanent damage. I hope that was right. I don't know why the joint inflammation causes the muscle pain but it sure does.
Hi Montana-woman,
PMR is classified as an auto-immune disease which effects the joints like your said, but the pain is referred to the muscles -- primarily of the shoulders, upper arms and hip area.
Here's a link to a pretty good source with more info:
http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/polymyalgiarheumatica.asp
Thanks for your responses. Now I understand why my muscles hurt as well! My PMR was diagnosed in July, 2009, but began in May of 2009. I had been exposed to human parvo virus at my school and also my daughter had been hit by a car while riding a bike. She was a very lucky girl and has recovered completely. I started on predisone (60 mg. Yikes!) in May and felt almost immediately better. I was only 60 and in really great physical condition. Yoga, hiking, horsebackriding, kayaking, plus teaching full time. It started in one shoulder. I thought I had overdone it. It soon spread to both shoulders and hips. I was finally able to get into a rheumatologist in July and she gave me the necessary blood tests. Before that, when I was only seeing my GP, he had x-rayed, MRId and done other blood work as well.
I'm now down to 9 mg. of prednisone and feeling pretty achy a lot of the time. I also take tramadol for pain. I see my rheumy again on Tuesday. I'll talk to her about the amount of pain that I'm feeling again. I hate to increase the prednisone. I'm finally getting my normal face back. But I seem to hurt too much on the dose I'm on.
I've tried methotrexate and my body didn't like it. When I felt the best, I was taking 17 mg. of prednisone. I know it's unrealistic to stay at that dose, but I'm tired of hurting.
Do you all take enough prednisone to be pain-free, or is it something I just need to buck up about. . Any advice would be much appreciated.
Gentle Hugs. (and I love the Happy Hour joke!)
Jannie
Hi Jannie, I am currently on 5mg Pred, 200 mg Plaquenil, 100 mg Tamadol am and pm. Also 15mg MTX. and I still need Panadol Osteo at least 2 to 4 a day.....when needed!