polymyalgia infoormation please!

Discussion in 'Fibromyalgia Main Forum' started by angellady, Dec 28, 2005.

  1. angellady

    angellady New Member

    This is my first post and I would appreciate any help regarding personal experiences with the treatment of polymyalgia. I have been recently diagnosed and I am currently on 25mg of predisone daily. What can I expect in the future and or alternative treatments.
  2. PVLady

    PVLady New Member

    I am going to "bump" your message to the top before it goes to the next page and no one sees it. I am not sure how many here have polymyalgia. You might also post this on the arthritis board here.

    Go to the top under "message boards" and you will see one for arthritis.
  3. karalyn

    karalyn New Member

    i have fibromyalgia, but my nanna got it a year ago she nearly died she is 87, they didnt know what was wrong with her. They finally did tests and found out she had polymalagia, she was on predisone for a year and now she no longer has it?? I think that is great?? i have had fibro for 4 years and i wish it would end!!
  4. Mikie

    Mikie Moderator

    My neighbor has it. She does pretty well but has flares from time to time. The important thing with PRM is to be sure the doc tests for giant cell arteritis because it can be prevented. Without treatment, it can cause blindness. Most docs know this and do test for it but it's good to be sure.

    Have you done a web search or looked for support groups for this?

    Love, Mikie
  5. angellady

    angellady New Member

    Thank you so much for the reply. I have been very sick over the christmas period and all of this was really unexpected. I had had extreme pain since October but was only diagnosed in late November but still no correct treatment until the second week in December.
    I really feel sorry for all those people who have gone through the same thing
  6. sunflowergirl

    sunflowergirl Well-Known Member

    He is on the prednisone and after getting his diet, exercise, meds. under control he is doing terrific. I was told that he is even back to bicycling daily and he's in his 70s. Apparently diet is very important.

    Good luck to you. This is a disease that can definitely be kept under control
  7. CarolK

    CarolK New Member

    Hi Angellady... WELLCOME TO THIS SITE!! It is a great support group!

    Before I was diagnosed with FM I first had Polymyalgia Rheumatica. If you do a word search... enter "polymyalgia rheumatica", on this site, it will bring up posts from the past on this topic. If you look in the upper left hand side of this site you will see a box titled "search".. it is under the "message boards" tab... type in "polymyalgia" or "polymyalgia rheumatica".

    I had pain and stiffness in all my joints... a feeling of swelling or like there was gel in my joints. When I would stand up it would take several seconds before I could walk or move. I was treated with Prednisone for about a year... while they kept doing blood tests to see if my SED rate was going down.

    Finally after being on the Prednisone for a year, my SED rate went back to normal and I was then able to
    s-l-o-w-l-y withdraw from the prednisone. My doctor told me that if I did not go on the Prednisone I was risking possible blindness from "giant cell arteritus"... so you DO NOT WANT TO FOOL AROUND WITH THIS... GO ON THE STEROIDS EVEN THOUGH YOU MAY NOT WANT TO!! YOU DO NOT WANT TO RISK GIANT CELL ARTERITUS!!

    I also had fevers as well as feeling like I had the flu all the time... along with the aching joints as well as an elevated sedimentation rate. After my sed rate came back to normal I started to have different symptoms... that's when I was diagnosed with FM.

    I've not had any relapses of the PMR... the doctor told me that it usually runs it coarse and is gone... that is what happened in my case.

    Hope this helps you Angel... blessings to you... CarolK
    [This Message was Edited on 12/29/2005]
  8. jfrustrated

    jfrustrated New Member

    bumping for angellady
  9. Mikie

    Mikie Moderator

    Carol has provided excellent info.

    Love, Mikie
  10. Mikie

    Mikie Moderator

    Someone else has just asked about this.

    Love, Mikie
  11. Empower

    Empower New Member

    My mother has it

    Hopefully you have a good Rheumy who can make sure to check that it doesn't develop into Giant Cell Arteritis.

    They can at times go hand in hand, but not always
  12. marw

    marw New Member

    What is the difference between this polymyalgia and Fibromyalgia? Please! I am willing to read any web sites about it. I am diagnosed for 4 years with Fibro, but prednisone has never been recommended as a treatment. Should it be? I'm not getting anywhere with my treatments....could not take any of the anti-depressents or other "funny" mind drugs....I have an excellent physical therapist who does what she can, I would be a lot worse without her....as the pain has deteriated, my doc has allowed mild opiates for the pain (Vicodin)which helps a lot, but with or without it, I have also the cognitive problems,and the fatigue. I get depressed from all this. I really, really want to be myself again, about more than anything in this world! Thank you for listening. If you have suggestions please let me know. I never got so discouraged in my life with any physical ailment. I was a dancer. Now I am just a "nothing," as far as I can tell. The hard part is that absolutely no one understands this....I don't even understand it myself half the time. I often think the pain is the normal state of being, until I get momentarily out of it for whatever reasons (usually the weather was good or I slept right, and yes, I have had the sleep test, which was normal)and then I can see clearly what a horror I have been in!! The pain is so incredible!
  13. CarolK

    CarolK New Member

    There is definately a difference between Fibromyalgia and Polymyalgia Rheumatica, also known as PMR. First the doctor must do a blood test to confirm the disease. It is confirmed by an elevated "SED rate".

    PMR is an inflammation of the red blood cells... it is in the rheumatoid family of diseases and needs to be treated with a course of steroids. Some of the pain is similar to FM, however, it has it's distinct differences. You must get periodic blood tests to see if the "sedimentation rate" is going down with the use of the steroids.

    It also produces a feeling of "jelling" in your joints... they feel very thick and heavy and it makes it hard to move. Plus you get fevers and lots of headaches and you feel like you have the flu all the time, and if the sed rates, which cause inflammation in the red blood cells is not brought down, it can lead to a condition called "giant cell arteritus" which can cause blindness!!

    None of these things occur with Fibromyalgia!! FM has it't own unique set of aches and pains... but never leads to blindness!! Plus as far as I know, FM does not affect your blood cells like PMR does. I just happened to get PMR first, then after I got over the PMR (which I had for about a year) I was then diagnosed with FM and CFS. Although I have not tested positive for the Epstein Barr Virus, I've had severe fatigue at times so the doctor just said I had cfs too.

    How long have you had FM?? I am sure you will know that you have good days as well as bad days. Hang in there and stay connectd to a support group like this one... it can be a real "oasis" in a very uncaring world!! Yes, it is true... life does change with this disease... but hopefully you will find your path and regain some happiness in new ways!

    Blessings to you Marw!! CarolK

    PS... you can do a google search on "polymyalgia rheumatica" if you want more info.
    [This Message was Edited on 12/30/2005]
  14. marw

    marw New Member

    Thank you, CarolK. I am sorry I took so long to answer. WEnt through a lot of pain recently...getting shots in my belly for post-surgical pain from a hernia operation.

    I am greatly reassured by your message, although the FM alone is enough to deal with!!

    I have developed a new symptom, bucking knees and weakness, so maybe I will get testd for the CFS also, but I think it is just Fibro.

    Thanks again. I appreciate this so very much!!!
    Margaret, (marw)
  15. CarolK

    CarolK New Member

    You are most welcome! Sorry to hear you had to go through surgery! Hope you are feeling better soon.

    Blessings... CarolK