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47 yr old newly diagnosed with PMR

Posted , 12 users are following.

ksrkelly
ksrkelly

Hi everyone,

My name is Kelly and I have just been diagnosed with PMR after a year of pain that started in my L thigh/hip.  The pain changed this summer and it is now in both hips and my right arm.  The arm pain is excruciating at night.  My mom also had PMR and was diagnosed at age 56.  I had my first elevated Sed Rate, 34 and CPR >14, in 2013 but I didn't have pain then.  At the time the elevations were not looked into.  My most recent tests are SR of 47 and CPR of .98.  Bilateral hip x-rays normal.  I was finally started on Prednisone on 09/06/15 at 20mg but have yet to see results. I was supposed to taper to 10mg starting tomorrow.   I expected to feel better already.  My question is this...are there patients out there that take longer to respond to the Prednisone in the beginning?  Everything I've read seems to show that most people have a dramatic turn within 48 hrs.  My GP is keeping me on the 20mg for now.  She is trying to get me in to the rheumatologist ASAP, current appt isnt until Dec 1st.  Hate my insurance, but thankful to have it at all.  I have now had this pain untreated for a year, and it is like nothing I've ever felt before.  I can't even straighten my left leg anymore.  I am going to PT as well.  Any advice from you pros out there would be most appreciated.

Thanks so much!!!!

Kelly

0 likes, 29 replies

29 Replies

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  • karen28161
    karen28161 ksrkelly

    Posted

    Hi Ksrkelly I am a 52yr
    • ksrkelly
      ksrkelly karen28161

      Posted

      Hi Karen....I don't think your whole post came through.  Would you mind reposting it for me?  Would love to hear what you have to say.

      Kelly

    • karen28161
      karen28161 ksrkelly

      Posted

      Hi Kelly ,don't know what went on their haha ,I was going too say it took me at least 4 weeks for my pain to ease when I first started taking prednisone ,some lovely people you will talk to on here will tell you that their pain eased moor or less straight away when the started on pred ,lots of luck and pain free days Kelly x
  • Diana112
    Diana112 ksrkelly

    Posted

    Hi Kelly, sorry to hear of your pain.  As you say, though I don't know a huge amount about the condition, most of us seem to respond within a couple of days of starting on pred so I am puzzled that you see no improvement after 5 days, particularly as I think 20mg is at the high end of the normal starting dose.  Your GP might rethink her diagnosis if there is no improvement.  One other point, If the pred does eventually bring the pain under control there is no way you should drop to 10mg in one go, the general rule is no more than 10% though I expect initially you could drop in 2.5 mg stages.  I do hope you feel better soon.

    Best wishes, Diana

    • ksrkelly
      ksrkelly Diana112

      Posted

      Thanks for your input Diana!  Just need to move forward with this.  The unanswered questions about this is the hard part, as I'm sure you know!
  • Anhaga
    Anhaga ksrkelly

    Posted

    I agree with diana112.  One of the confirmations of a diagnosis of PMR is rapid response to prednisone (by rapid we mean about 1 to 3 days).  Nevertheless you now will have to reduce the prednisone slowly even if your diagnosis is something else.  I believe you should ask your GP to refer you to a specialist.  
    • ksrkelly
      ksrkelly Anhaga

      Posted

      Thanks.  The referral was sent in last week but the soonest they could see me is Dec.  I THINK NOT!!  My GP is working on getting that appt moved up!  Fingers crossed!
  • Anhaga
    Anhaga ksrkelly

    Posted

    Just another thoought - are you writing the date as an American where the month is written first?  Were you started on pred in June (06) or just a couple of days ago in September(09)?  If June you definitely should be seeing someone about rethinking that diagnosis of PMR.
    • ksrkelly
      ksrkelly Anhaga

      Posted

      Hi there.  Yes American date, Sept 6th. 
  • Anniecurd
    Anniecurd ksrkelly

    Posted

    Hi Kelly,

    Sorry to hear that you're in the PMR club too. I was just formerly diagnosed by a rheum after two months of pain and trying to get my doc to do something. He put me on 10mg which did nothing and after a week upped it to 15mg, which was a little bit better, but my arms still really hurt. The rheum gave me a choice of increasing the preds to 20mg or getting a shot of pred. She said the shot should last for 6 weeks and by that time I could start reducing my dosage, and it would be easier to reduce. I said go for it. I woke up the next day and it was like a miracle, I could get dressed and walk the dogs without having to wait till noon. I felt completely normal. Why do docs allow us to suffer with this excruciating pain that is only relieved with preds. And why are they so hesitant to prescribe the right dose? I understand their are side effects, but our quality of life sucks with this disease. I hope you get some help, other people don't understand how debilitating this disease is.

    Annie

    • ksrkelly
      ksrkelly Anniecurd

      Posted

      Thanks Annie.  The pain really is debilitating and brutal.  I'm 47 and should be active and enjoying my life, and that's just not happening.  I'm really hoping the next few days gives me some relief.  To start over with another diagnosis just makes me see red, but certainly want the correct one.  
  • dan38655
    dan38655 ksrkelly

    Posted

    I responded to my first doasge of pred in 3-4 days.  After 4 days it was a  huge improvement.

    Later on, during my last tapering from 6mg, even a 1mg change seems to have effect within 2-3 days.  So it is maybe a slightly faster response to a reduction than to an increase.

    • ksrkelly
      ksrkelly dan38655

      Posted

      Thanks, I'm holding out hope that tomorrow brings the relief I need!
  • ptolemy
    ptolemy ksrkelly

    Posted

    Hi Kelly, I am so sorry to hear about your pain. As the others say 20mg of pred should have a pretty rapid result, but you have only been taking it for a couple of days, so it should have an effect in a day or two or the diagnosis of PMR should perhaps be revisited by your doctor. Did they check for vitamin D deficiency, this is a simple blood test and the symptoms are similar to PMR, also fibromyalgia is a possibility. 
    • ksrkelly
      ksrkelly ptolemy

      Posted

      Thanks for your input, I really appreciate it!!!
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