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Early Diagnosis vs late on outcome

Posted , 13 users are following.

donna60512
donna60512

I have seen so many cases on here of people who were not diagnosed or misdiagnosed and had to wait months or years to get correct diagnoses and proper medication.  So far I have been very lucky.  I do not want to jinx myself here.  I was diagnosed in early May.  I have been pain free for several weeks and am down to 10 mg prednisone and my weekly methotrexate.  I may end up having flares when I further reduce in two weeks.  I will let everyone know then if I do.  Here is my questions????  If a person has been diagnosed early on, has the recovery been much quicker with fewer flares than those who have just gone through hell getting to a correct diagnosis???  Thanks, Donna

1 like, 50 replies

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  • faye______00403
    faye______00403 donna60512

    Posted

    I got a quick diagnosis.   Complained of pain in various area and doc watched

    me try and get up out of a chair and did sed rate and it was 92.....for a year

    I reduced and didn't have any problems.   I was down to 4mg from 20mg

    and had an unfortunate bout with sciatica,  I was down in bed for about

    two weeks barely able to move.   Intense pain.   When i was back up and

    moving sed rate had gone to 60.   Have had a terrible time reducing from

    20mg....I have no idea why the second time around has been so difficult.

    I'm still at 20 and having pain.   Markers are normal.   I debate everyday

    about going up to 25mg but hate to go so high....I guess I need to go in

    and talk to doc....

    • jeanne333
      jeanne333 faye______00403

      Posted

      I didn't complain when I first started having pain as I knew I had gout (real bad case)) and arthritis. I final talked to my doctor sent to an RA for PMR. Reduced from 20mg pred to 7mg pred and then a big flare hit. I've been trying to get down below 20mg pred since before Christmas. I'm now at 19mg pred and hoping to go to 18 in 2 weeks (that will be 8 week mark) It isn't looking good, as I'm still having pain and stiffness. I'm like you, probably should just go back up to 20mg predict and stay there. I can't take some of the other meds they put us on, as I had very bad side effects.

    • donna60512
      donna60512 faye______00403

      Posted

      Oh, my goodness, that is too bad.  Sciatica can be really horrible.  I was saying that I didn't want to jinx myself since all is going well now.  My rheumatologist keeps saying that with the methotrexate I should be okay, but just don't know.  Good luck, I hope you can get down very soon.  Donna

    • faye______00403
      faye______00403 jeanne333

      Posted

      I'm going to give 20mg a couple of more days and then going to increase

      at least to 23mg, my doc told me once I could increase as high as 5mg but

      no higher.....I'd just like to know for sure pain is PMR related

      since I have some arthritis and low back issues.   Pretty sure the burning

      pain i feel in both shoulders is PMR.   ...I'm afraid it will just get more out of contol if I don't do something..  What's the point of taking pred

      if we don't take enough to control the pain?

    • donna60512
      donna60512 diana21296

      Posted

      absolutely none.  I was the most worried about hair loss.  My stylist even told me on Thursday when I was there that my hair seems healther than ever.  I really do not think that I have any side effects from it.  Everyone seems so reluctant to take it and I have  been fine. I have a friend who is on it for RA and she has had no side effects either.  I do take Leucovoin once a week to counter the side effects.  All seems just fine.  I am hoping that it will allow me to get down on the prednisone much faster.  The prednisone scares me more thatn the methotrexate.  
  • jeanne333
    jeanne333 donna60512

    Posted

    I didn't complain when I first started having pain as I knew I had gout (real bad case)) and arthritis. I final talked to my doctor sent to an RA for PMR. Reduced from 20mg pred to 7mg pred and then a big flare hit. I've been trying to get down below 20mg pred since before Christmas. I'm now at 19mg pred and hoping to go to 18 in 2 weeks (that will be 8 week mark) It isn't looking good, as I'm still having pain and stiffness. I'm like you, probably should just go back up to 20mg predict and stay there. I can't take some of the other meds they put us on, as I had very bad side effects.

  • Anhaga
    Anhaga donna60512

    Posted

    It took between 13 and 14 months for me to be diagnosed.  I started pred last June, 15 mg.  Am now, since mid July, down to 3 mg.  I felt return of pain around 9 mg, but I discovered the dead slow plan then and have used it ever since, with my own variations and no problems.

    I could be wrong, but my feeling is that unless untreated PMR has led to further health issues through inability to exercise, for example, the length of time before diagnosis really has no effect on how long the disease may last after treatment commences.  We do know, of course, that untreated PMR inflammation can sometimes develop into GCA, but I think that's a different issue. 

    • donna60512
      donna60512 Anhaga

      Posted

      My thoughts also had to do with the inability to exercise and do things that are good for our bodies while waiting for a diagnosis.  I was just curious.  I am also curious about flares on people who have also opten to do the methotrexate with the prednisone.  I read so often that people just refused to go that route.  I was more concerned about the side effects of prednisone on my already comprimised vision.  I have had no side effexts from the methotrexate at all, am glad that I chose that route.  I guess to really do an accurate study, I would need to know early diagnosis along with taking methotrexate.  Thanks, Donna
    • Anhaga
      Anhaga donna60512

      Posted

      There's been some discussion about low dose naltrexone for PMR.  Have you read anything about that?

    • donna60512
      donna60512 Anhaga

      Posted

      I have not heard anything about Naltrexone.  I will have to research that one.  
    • donna60512
      donna60512 Anhaga

      Posted

      Yikes, just looked that one up and doesn't sound like anything I  would want to try.  

    • Anhaga
      Anhaga donna60512

      Posted

      I didn't look up side effects or anything.  But if you look up prednisone, you'd never want to take that either.  I'll see if I can find where I saw it discussed and get back to you, but maybe not tonight!

    • donna60512
      donna60512 Anhaga

      Posted

      I know, the only reason I take the prednisone is that from what I understand it is the only thing that really works in the begining.  I just want to get off of it sas soon as possible, that is why I went with the methotrexate.  I just keep seeing how many people refused to take the methotrexarte in the first place. I just decided to go with it and so far so good.  I prefer not to look up all of the side effects of anything.  I don't want to be influenced by all of those things.  I am doing the holistic things like taking turmeric and other suppletments, eating right, and trying to get in as much walking as I can.

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