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New and scared

Posted , 15 users are following.

Sarmone
Sarmone

Hi, I'm 37 and was diagnosed with PMR just under 4 weeks ago. I woke up quite sore all over but my arms and hands had seemed to be my main concern because I could not hold on to the steering wheel. After a week of tests my doctor put me on pred 50mg a day. It took about a week to kick in and after that we started to reduce it down to 40mg. With in two days I was in so much pain again. The doctor has since put me back up to 50mg but I have no signs of relief. I'm having problems with what I can do and should do? Example; Do I push through the pain just so I can get dinner ready. Then be in agony for hours on end? Because I can sit there for a day and do nothing and still be in pain. People are talking about exercise on this forum, can u give me some examples? My pain was mainly my arms hands and shoulders. Now it is my calves and feet when I walk. Is this normal? I'm feeling extremely useless. I have had to take time off work just so I can get this sorted and I have young children so I'm not coping well with not being able to some things. I try not to take pain medication if it's not needed but I just haven't had much relief at all. When the pain gets to bad I get quite aggitated and pain relief does not work. So to some it up, if I sit and do nothing I get throbbing pain all over that is bearable. When I do anything like pick up a cup of tea do dishes I get more pain for longer. If I cut chicken pick up a hevey pot. I'm in tears with pain and suffer for days.any kind of advice right now would be nice. Thanks

1 like, 24 replies

24 Replies

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  • ptolemy
    ptolemy Sarmone

    Posted

    Sarmone, I am so sorry to hear you are in so much pain. As others have said it may not be PMR that you have anyway. Normally taking 15mg to 20mg of pred acts miraculously for the pain on diagnosis. At 50 mg it may work but other problems will also react at the higher dosage, also it could be fybromyalgia which does not react to steroids, also things like vit D deficiency, rheumatoid arthritis and probably several other possibilities. PMR is difficult to diagnose and is usually done by discounting everything else, high blood markers mentioned CRP and ESR may give a clue and the miraculous reaction to pred at a low dose 15-20 mg. Most other things need a higher dose. It tends to hit people slightly older or even a lot older than you too. I do hope you can get it sorted out. I would go back and tell them that things are not working and try and get it rediagnosed, possibly with another doctor.
    • george74678
      george74678 ptolemy

      Posted

      That's correct. I whent to a rheumatologist . 20 mg worked magic on me real quick. My ESR was 110. Now in low 20 s.
  • Elijo
    Elijo Sarmone

    Posted

    I am truly wondering if you have the correct diagnosis because to my knowledge prednisone will help, which is diagnostic.  Your ARE young for PMR.  Pain medication did not help me before I was diagnosed (Nov. 1, started with 40 mg., then down to 30 until Mar. co, 2016, and feeling good.).  What did your ESR show?  Mine was not elevated, but other tests were off.  Get to your MD and see what persues, OK?    Elinor
  • george74678
    george74678 Sarmone

    Posted

    My rheumatologist ruled out everything and then said we will try 15 mg prednisone.if you have PR,you will feel much better in a day or two. I did ,but not totally until he increased it to 20 mg. that was a year and a half ago .now I'm down to 4  mg/ day. My SED rate was 110 . Now it is in the 20s. You should have felt real good with that high a dose rather quick in my opinion. That said,everyone reacts differently. I would get a SED rate to see if your inflammation is down. I know what you mean with the grip. My right hand and shoulder hurts just to cut food with a fork. 50 mg is a high dose so you want to get a reduction asap on the dose. I would also question whether you actually have PR .im not a doctor. Good luck to you
  • IssyR
    IssyR Sarmone

    Posted

    Hi Sarmone, hate to repeat all of the above but the pred is like a miracle cure and when first diagnosed cuts through the pain like a knife...i was started on 20mgs and it was effective within 24hrs...i've only ever heard on here people GCA being started on as high a dose as 50mg...i wish you all the best in your continued search for answers...xx
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