Polymyalgia Rheumatica Question

Discussion in 'Fibromyalgia Main Forum' started by becc, Mar 7, 2006.

  1. becc

    becc New Member

    Hi,

    I know some people here have polymyalgia rheumatica so I hope someone might be able to help me with this..

    My father was diagnosed with PMR two or three months ago. He’s taking Prednisone – the doctor started him at 25mg, I think. His blood tests have been showing improvement so his doctor lowered the dose a couple of times. I think he got down to 12.5mg but not long after, the symptoms started returning and his latest blood test has shown a slight worsening – nowhere near as high as when he was first diagnosed but quite a bit higher than it had been.

    He’s had side-effects from the Prednisone – the worst being pretty severe bruising at the slightest bump. He has always bruised easily and badly but it’s much worse now. Because of this – and a few other side-effects – he’s pretty eager to get off Prednisone as soon as he’s able. He realises it could take several months or even a couple of years but I was wondering if anyone is aware of alternative (supplementary, I guess) treatments for PMR? Something to take in addition to Prednisone that may help speed up recovery. I have no idea if there is anything else available but thought this would be the place to ask.

    Thanks for your help :)

    Bec
  2. becc

    becc New Member

    bump...
  3. becc

    becc New Member

  4. sofy

    sofy New Member

    In early 1990 I was diagnosed with lyme (by gp) and went on antibiotics for 6 weeks. Saw a tiny inprovement but still couldnt touch my knees or raise my arms over my head so got an appt with the rheumy dept at a big teaching hospital.

    They never testes again for lyme just said it was polymyalgia and put me on mega steriods and lots of other drugs for 2 years. Yes massive steroids helped my symptoms immediately and I was good for a few more years.

    Im now back to lyme disease.

    Like fibro, chronic fatigue, ms etc these diagnoses can be wrong so many times cuz there is no difinitive symptoms or tests to saw this is what is the root cause of these symptoms.

    All thes health troubles are a group of symptoms that most docs feel daunted by and I suspect they are a little too eager to hand out a syndrome diagnosis when it seems to fit.

    The worse part of pmr diagnosis is the harmfull and life long bad side effects due to the treatment. The quick road to pain help has cost me dearly.

    Anyone who is on long term prednisone, even low dose such as asmatics, die early due to the toll of this miracle drug.

  5. justlooking

    justlooking New Member

    My Mom was diagnosed with this a few years ago and is completely recovered now. She had to take Prednisone also and her main side effect was a tremendous amount of weight gain. It took her a couple of years to get the weight off but the Prednisone did cure her of the disease.

    My Mom is a supplement/herb nut (I mean this in the most loving way) and takes several different kinds daily but there wasn't anything she could find to take to specifically target the Polymyalgia, which is why she had to take the Prednisone. There are terrible side effects to the Prednisone but ultimately by taking it she was able to fully recover and live a normal life again.

    Unfortunately she wasn't able to find a supplement to assist in her recovery but this was a few years ago and maybe since then there have been breakthroughs in alternative medicine someone else may be aware of. Just wanted to share her success in conquering the disease so you and your father know you can have a full recovery!!

    Sincerely
    JL
  6. fifthofanickel

    fifthofanickel New Member

    He's had this for about 7yrs. now. He's 70yrs. old..He too started out w/excruciating pain over his body.

    He started w/Pred. 40mg. to alleviate the immediate pain, til he could get into see a rheumy..He backed it down to 20mg.daily. And he got the moon face & put on alot of weight. After feeling better, he decided to decrease the pred. We did this by decreasing a half mg. every 2 wks. Got him down to about 5mg. & the symptoms came back, so back to the 20. We did this process of going off & on for about 2yrs.

    Then finally he was off of it for about a yr. (remission) & it came back again. His legs are the worst for him. He can only walk short distances & they seem to become very weak. He can only do any task for about 15min. then needs to rest..

    During the time when trying to wean off the pred. the rheumy tried Methotrexate, azulfadine, & plaquinal. This made his liver enzymes jump higher then high. So he can't take the Meth or azulfadine anymore. He takes arthritis strenth tylenol (sparingly) & is back on pred. 5mg.daily. He is trying to wean off of it again, doing the half mg. every 2wks. Hes down to 4mg. daily right now.

    So hopefully another remission is in site. I've read articles where this can come & go the rest of his life. And the rheumy agrees, it will never heal completely.

    W/the pred. he developed cataracts, blood clots, high blood pressure, high liver enzymes, weakness, fatigue, etc. It AIN'T a good drug for anyone. Esp. long term.

    Also, he bruises easily too. That goes along w/the pred. He wears childs shin splints over his arms when he's cutting wood or hauling brush..That does cut down on the bruising. He has to take many rest breaks however..

    I wish I could offer some good news re; this dd, but it's a come & go type problem. I can only hope for you he goes into a remission to give his body a rest b4 the next one comes on.

    I know this is alot to absorb, but hopefully some of this info. will help him. If I can help in any way, just post a message to me. I don't get on her everyday, but do check several times a week.

    Wishing you well;
    Hugs & Blessings;
    Fifth
  7. fifthofanickel

    fifthofanickel New Member

  8. becc

    becc New Member

    Thanks for your replies! There always seems to be someone who can answer questions on this board :)

    Sofy, I'm sorry you've had such a run-around with this. I still can't believe that all these illnesses are so closely connected and so destructive yet ignored by almost everyone in a position to help. I'm hoping to see someone about Lyme Disease soon so I may suggest Dad does, too.

    Justlooking, thanks for the information. I'm glad your mother has recovered! I had a feeling there wouldn't be any other effective treatments.. I've read elsewhere that everyone taking Prednisone should be taking vitamin K as well so I've asked Dad to check with his doctor next time he sees her.

    Fifth, I hope your husband goes into remission again soon. His story seems to be fairly typical of others I've read so I guess that's what we should expect for Dad. He's been bad today but it seems to be calming a bit tonight so maybe the increased dose is starting to work. I think both he and his doctor had been a bit too eager to get him off the drug and reduced it too quickly.

    Thanks again for all your help :)

    Bec