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Longterm PMR

Posted , 15 users are following.

gillian75478
gillian75478

I don't want to depress this group by my longterm PMR (diagnosed 2007)- I like everyone else was keen to reduce my steroids as soon as possible after diagnosis and although i have managed to reduce to 2mgs twice ,using the dsns method I have then flared and this last three years I have flared each year and now cannot seem to get much below 9mg before trouble flares!! In desparation following a flare last Easter requiring me to to increase to 20 mgs yet again I was persuaded to go onto Methotrexate in an effort to get me off steroids. I am also in need of a hip replacement operation and have been asked to wait this year whilst the Rheumatologist investigated whether this was RA with a PMR presentation and to try and reduce my steroids prior to the operation.

I now have been on MTX plus folic acid once a week for 5 months. I have become increasingly fatigued - more then ever before during my PMR journey and am in constant pain with my hip which prevents me excersing now. It has been discovered I am now anaemic and so have been put on iron supplements alongside the multiude of pharmacologies to prevent and support other diagnoses that have developed since being on steroids. I sleep all night apart from if my hip pain wakes me or the need for the toilet but if I do any activity in the garden, go shopping , housework or look after the grandchildren then I have to sleep in the day to recover!! I am so frustrated. It is not iron deficient anaemia, my thyroid levels are fine and according to further tests it does not appear to be RA. The fatigue I now have outweighs the stiffness from PMR - I have now been advised by rheumatology to increase the Folic acid to 6 days a week and MTX as previously prescribed plus to stick at 9 mg steroids. To continue with the iron tablets and to give it 4 weeks to see any result. I am too tired to think it all through, to process it all and was wondering if any of this group has experienced any of these problems - especially with MTX .

On a more positive note whilst I have been reducing on steroids the majority of the time, as long as I have paced myself and was not undergoing a flare, then my life style has been little affected - it is only lately that I have been restricted mainly by the hip pain and more lately by this fatigue. The experience of this group is invaluable to its members. Wishing you all the best.

0 likes, 29 replies

29 Replies

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  • Danrower
    Danrower gillian75478

    Posted

    I don't think you post was published in full, I can only read 3 lines.

    • gillian75478
      gillian75478 Danrower

      Posted

      Thanks for trying to read post. Don't know how to rectify - fatigue is not helpful with computer problems!! Thanks for letting me know of problem.

    • constance.de
      constance.de gillian75478

      Posted

      I received the post in full, so no problem here.

      Sorry to hear your tale of woe Gillian. Not much I can say except "hang in there" some day (so they say) things WILL improve.

      Constance

  • lynda62707
    lynda62707 gillian75478

    Posted

    something's wrong w/your post. I'm unable to read it....sides are cut off...please try it again!

    • ptolemy
      ptolemy gillian75478

      Posted

      I wonder why it is working OK for me. It is OK on two different computers.

    • Diana112
      Diana112 lynda62707

      Posted

      Hi Lynda, I have found the sides of the post cut off too. The only way I can see the whole post is to reduce the magnification under the 'settings' icon at the top of the screen somewhere around 60% for me

  • ptolemy
    ptolemy gillian75478

    Posted

    You sound as if you have the same problems I had, I have had a new hip now, but my surgeon wanted me on zero pred, we negotiated 5mg in the end. I was anaemic and had a blood transfusion after the op and then a drip. I am on daily folic acid. Before my op in the end I was totally housebound and needed a wheelchair, I was in agony.

  • margaret01981
    margaret01981 gillian75478

    Posted

    all of your words are there. It just breaks words and puts remaining letters on next line.

    i know what you mean about fatigue. Vitamin B's can help some with fatigue. Also stay on lower carbs.

    I noticed when i got down to 6mg, i felt a whole lot better overall., although i still have fatigue, it has improved.

    i wish you the very best this go round!!

  • r.d.s26296
    r.d.s26296 gillian75478

    Posted

    Gillian, it certainly must be so frustrating for you all these PMR ups and downs...

    Is it possible for you to take a second opinion as to your current situation ? ( even a doctor privately )

    Privately the doctor will give you more attention ..

    Auto-immune diseases hit us out of no where and if truth be know nobody seems to know why ...

    Stay strong friend and know you are having a set back and not a defeat

    Please let us here on the forum how you are keeping ...I certainly feel for your situation ..

    warmest regards

  • Anhaga
    Anhaga gillian75478

    Posted

    Sorry, I don't see all your words and I can't properly understand your message. Your font is unlike the rest of the site. Sorry.

  • EileenH
    EileenH gillian75478

    Posted

    Can't help a lot as I can't read your post as I only have the beginnings of the 3 paragraphs you wrote. Do I gather that the methotrexate hasn't helped a lot?

    If it is any consolation (not exactly cheerful consolation I know) but I have had PMR for over 14 years and it took 5 years to get a diagnosis. If you stick to the dose of pred you need and resist the efforts of doctors to force you to reduce and even get off pred life does get better - I promise! The PMR doesn't stop me doing much - but I insist on the dose of pred I need, Not what they think I should be on...

    • r.d.s26296
      r.d.s26296 EileenH

      Posted

      i copied pasted the post from GILLIAN

      which a few people couldnt read the contents

      "I don't want to depress this group by my longterm PMR (diagnosed 2007)- I like everyone else was keen to reduce my steroids as soon as possible after diagnosis and although i have managed to reduce to 2mgs twice ,using the dsns method I have then flared and this last three years I have flared each year and now cannot seem to get much below 9mg before trouble flares!! In desparation following a flare last Easter requiring me to to increase to 20 mgs yet again I was persuaded to go onto Methotrexate in an effort to get me off steroids. I am also in need of a hip replacement operation and have been asked to wait this year whilst the Rheumatologist investigated whether this was RA with a PMR presentation and to try and reduce my steroids prior to the operation.

      I now have been on MTX plus folic acid once a week for 5 months. I have become increasingly fatigued - more then ever before during my PMR journey and am in constant pain with my hip which prevents me excersing now. It has been discovered I am now anaemic and so have been put on iron supplements alongside the multiude of pharmacologies to prevent and support other diagnoses that have developed since being on steroids. I sleep all night apart from if my hip pain wakes me or the need for the toilet but if I do any activity in the garden, go shopping , housework or look after the grandchildren then I have to sleep in the day to recover!! I am so frustrated. It is not iron deficient anaemia, my thyroid levels are fine and according to further tests it does not appear to be RA. The fatigue I now have outweighs the stiffness from PMR - I have now been advised by rheumatology to increase the Folic acid to 6 days a week and MTX as previously prescribed plus to stick at 9 mg steroids. To continue with the iron tablets and to give it 4 weeks to see any result. I am too tired to think it all through, to process it all and was wondering if any of this group has experienced any of these problems - especially with MTX .

      On a more positive note whilst I have been reducing on steroids the majority of the time, as long as I have paced myself and was not undergoing a flare, then my life style has been little affected - it is only lately that I have been restricted mainly by the hip pain and more lately by this fatigue. The experience of this group is invaluable to its members. Wishing you all the best."

      ABOVE IS GILLIANS ORIGINAL POST

      R.D..S

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