Hello everyone
I am a new member with a few questions, I hope some of you vetrans can answer for me. I am searching for answers regarding PMR. I am 50 years old, and have been suffering for about 2 years. I am wondering if lower back/hip involvement is always neccesary with PMR ??? My main problems are upper back, ribs, shoulders, upper arms, neck, back of head. Extreme stiffness, pain constantly. Mornings are awful - evenings are a "little" better. Middle of the night is pathetic
I can almost draw a "line" around my upper body - "middle of breasts right around through the back, and then up". My lower back is always in a "low rumble", but flares severely only occassionaly. When it does flare, I cannot bend, and walk with short little steps. It has been 2 years, and things just aren't getting any better. I am also extremely fatigued, run down, have lost weight unintentionally, loss of appetite really. Can it take a while to diagnose PMR ??? Did others have problems getting diagnosed ?? Is the sed rate always extremely elevated ??? Can the symptoms develop gradually, instead of sudden onset ??? My internist keeps telling me I am too young for PMR ??? I see my rheumy next month - and will bring this all up with him again. I guess I am looking for people's input here ..... how long it took to get diagnosed ..... how bad your symptoms were before you began treatment ???? Thanks so much in advance for any guidance, advice, input. Hugs,Mellie Hi Melanie I don't have RA, but something similar. If you post your message onto the 'Rheumatoid' section here, you will get heaps of emails from the wonderful people here! All the best, Thank You Wendy !!! I was waiting for a reply from some of the PMRer's .... but this board doesn't seem too active .... Maybe there aren't that many people with PMR ???? Thanks again ..... I'll see you over at the Rheumatoid section
Hugs, Mellie
Or a mod that answers questions ???
I had hoped to find some answers ??? Mellie Hi Mellie If you look at http://www.arc.org.uk/about_arth/med_reports/series5/ho/6521 /6521.htm and http://www.netdoctor.co.uk/diseases/facts/polymyalgia.htm you get a lot of information. In my case I was lucky not to have any real pain. The diagnosis took about 3 months and was finally settled by a biopsy in my left temple. HI Mellie, I was was diagnosed just a few months ago. The first doctor I saw about PMR ran blood tests and I had no sed elevation and dismissed me. The second had ears, are rare find these days and tried me on predisone . I responded well to the medication I could actually get up and sit down without a struggle and pain. I have heard of younger people getting this, I am 62 but believe I have been struggling with this for a some years and was misdiagnosed. You might ask your doctor to try you on Predisone and if it works great if not back to the drawing board. Wish I had more for you, let me know how you make out. Hi Millie, You are right this board doesn't seem to be very busy. But I have learned quite a bit by reading what is posted on the board. I have also done some research starting with the Arthritis Foundation at http://www.arthritis.org/conditions/DiseaseCenter/pmr.asp. It was a surprise to me when I was dx'd with PMR in June 2006. I had been having lots and lots of pain for several years but the doctors always came up with different diagnoises: degenerative disc disease, OA, over work, stress and so on. Finally I got my pcp to refer me to a rheumatalogist and he didn't have much trouble diagnoising my problem. I still have OA, DDD, but I have added PMR to the list. Since he prescribed Prednisone for me I have seen a geat big change in how I feel and what and how much I can do. I still have some days when I just don't feel up to doing much of anything but not near as many of those days I did before. Best of luck in getting a definite diagnoise. That is probably the most important thing you can do. After all you can't very treat something if you don't know what it is. Hang in there and do keep coming back to this board. Let us know what you find out and how you are doing. Better, I hope. Soft Hugs and love to you, Mariellen in NM LAND OF ENCHANTMENT
Here is a great site to educate yourself about PMR: I have had this stuff since 12/05. Prednisone relieved my multitude of symptoms miraculously then- I took 10 mg with great results. Over the course of the following months- I have had flare ups of symptoms: aches in back/shoulders/neck/jaw/head and the most overwhelming exhaustion.. when I try to tpaer off the prednisone. I have recently had to go back up to 20 mg. due to a major flare up recently. The heat and getting too tired seem to cause me to flare. I have had a struggle to find the balance in my life. I have always been so active- a real do-er. Now I can do about 1/3 of what I could before. I've learned not to push myself if I feel fatigued or I will pay. Work has become more of a challenge- I am a home health nurse and can only work 2 days a week now. May have to cut back even more. I'm blessed to have a job that lets me work when I can. You really have to listen to your body and nurture it. Eat well- cut out the crap- has helped me. I no longer tolerate alcohol at all. My sed rate was elevated in 12/05 -but came down with the prednisone. My Rheumy wanted to put me Methotrexate to help reduce the prednisone need- this is where I disagree with her. Read the information from the Cleveland Clinic to understand why. Hope you find your way with this. It is good to have you on board. Rosey
http://www.clevelandclinicmeded.com/diseasemanagement/rheuma tology/prcga/prcga.htm Hello, Mellie - To answer some of your questions: my doctor first told me I had Osteoarthritis. The stiffness started in my hamstrings & hips, but when it spread to my shoulders & upper arms, I came across PMR on the internet and went back to see my doctor, he checked my SED rate & put me on prednisone. That was in late Feb/06, about a month after the first symptoms appeared. I was 55. There have been quite a few people on this (and other) discussion board who are under 50. Seems PMR affects different people differently. I've never really had pain at rest, only from the stiffness when I try to move. Before the prednisone, it was very difficult to even turn over in bed. or to physically get out of bed - I had trouble dressing myself (still do sometimes!), bending over, pulling a t-shirt over my head, etc. I don't know much about SED rates, as I've never had mine rechecked after the initial diagnosis. I do know that it will usually flare up as you reduce the prednisone dosage, and it's often necessary to go back to a previous level to stay comfortable. I put up with some pain & stiffness, as long as it doesn't affect my daily activities. I've been as high as 15 mg per day, and as low as 5. I've been at 5 mg. the past few weeks, and think I may have to go back to 6 again. Good luck! Ruth
it took a long time for me to get diagnosed with pmr, some doctors really have no business being in practice.............I have been in pain now for 3 years................my pain started in the bottom of my feet and in my legs.................gradually crept up to my hips.............now in my shoulders, across my upper back, and lower back and the back of my head...............i do not think lower back involvment is necessary with pmr...............everyone pain is a little different...............some have pain in their hands..............I never had that...............as far as the sed rate, everything i have read indicated that that is one of the ways to diagnose pmr..........that and taking prednizone, if it helps the pain then it is probably pmr..................I am also extremely fatigued, sometimes I can not even climb a flight of stairs..................I hope thing work out for you................Good Luck, Georgiana
Hi Rosey
thanks for the info on methoteexate. my dr. wants me to take it and i really did not want to, so it is good to know that it would not help pmr
thanks again and good luck to all georgiana
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