1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

PMR Timeline

Posted , 17 users are following.

sheila28713
sheila28713

I joined this forum today but have been reading posts for several days. It's about time since I have had PMR for over 2 1/2 years. I am a nurse but thought that, according to the literature, it would subside by 3 years at the latest. From what I have read here, that is certainly not the case. I would love to hear about your experiences with PMR with regards to length of time you have suffered with it. Sheila

0 likes, 77 replies

77 Replies

Prev
  • pauline36422
    pauline36422 sheila28713

    Posted

    this is my 5 year  with 2  minor flares,   didnt wait too long befor i upped my pred, whilst haveing them.  had a session of  bowens treatment, which i must say worked wonders.   i am now down to 3.5 mg  with no discomfort, so i am hopeing i am on the road to recovery  fingers  crossed.  tapering very slowly. as my good  friend eileen.advises. without this lady WHERE WOULD WE BE  xxxxxx

     

    • sheila28713
      sheila28713 pauline36422

      Posted

      Hi Pauline,

      You and I are at the same Pred dose essentially, but you have had double the timeline of PMR.  I need to look into Bowen treatment - haven't gotten to that yet, but have heard it referenced in the discussions I've read these past couple days. 

      Yes, it is wonderful having someone like Eileen who is so generous with her time and knowledge about PMR/GCA.  Very admirable indeed!

  • constance.de
    constance.de sheila28713

    Posted

    As you see from the other posts - 3, 6, even 10 years is not unusual.

    I wish the people who wrote these manuals/articles could have PMR for just a few months!😡  No I don't, I wouldn't even wish that on my worst enemy (or would I?!)  

    Seriously though, I do wish medical students, including nurses, were made to read articles on this site before they advise people about PMR.  Here there are hundreds of people dealing with this pesky illness and they KNOW what it is like, and there are several 'real' experts on here to advise if they have problems/ questions.

    I hope you are one of those who are lucky and don't suffer too long.

    Take care!

    Constance

    • sheila28713
      sheila28713 constance.de

      Posted

      Yes, Constance, it has helped a lot to hear others' experiences with longstanding PMR.  I don't get it either, why the research to date isn't accurate about timeline.  I had hoped all this time that PMR would 'get lost" now that I'm closing in on three years. Reality bites!

       

    • Anhaga
      Anhaga constance.de

      Posted

      I was on another forum the other day, in a vain attempt to find someone's account of his journey, and happened to read through the way to diagnose PMR and even there it says things like "over 50", not even "usually over 50".
    • nick67069
      nick67069 Anhaga

      Posted

      You have to keep in mind what average time  is... This site and any simmilar site has participants who have PMR. One that had PMR don't post here or at least I have not seen any post from them. What is happening , in essence, people who had PMR for longer time will dominate here and thus give impression that it last longer then average.
  • EileenH
    EileenH sheila28713

    Posted

    I've had PMR for a good 12 years now, 5 years undiagnosed and unmanaged. I diagnosed myself thanks to the internet and presented the fact to the (wrong) GP in the practice who hadn't the courage to try anything himself because my ESR/CRP have never been raised. A different GP in the practice would probably have managed - but she was part-time and on maty leave more than she was there. The rheumatologists I saw at various times were also fairly unhelpful! One said OA - of which there is no sign - and the other simply wanted it to be something else, not PMR, despite a textbook 6 hour response to 15mg pred. Both did not want to listen to my reports of symptoms and experiences.

    The literature suggests that about a quarter are through PMR and off pred in 2 years or less. They remain at a higher risk for relapse subsequently. About half take from 4 to 6 years and the German standard rheumatology text says 5 years. Here in Italy they assume far longer than 2 years, it takes what it takes and the dose of pred it takes. It is only the English-speaking medical world who appear to have this 2 year fixation and getting off pred - to our detriment. And the last quarter of us? We need even longer and in some cases remain on a low dose of pred for life, although whether that is PMR or poor adrenal function isn't entirely clear. Those figures fit well with what I've come across on the 3 forums in the last 6 years.

    • sheila28713
      sheila28713 EileenH

      Posted

      Eileen, it was very useful to get the stats on PMR timelines, given that it is next to impossible to find such information. Thank you!

      I know that you have read everything you can find out there on PMR; we all benefit from the plethora of knowledge you have on this debilitating condition. Even my rheumatologist has limited knowledge of it and I find my obligatory appointments with her every six months to be a collosal waste of my time.

    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      Those stats are very interesting. From my reading of it I would be better placed not wishing for a quite so speedy recovery for fear of relapse! Lol
    • EileenH
      EileenH FlipDover_Aust

      Posted

      I think the autoimmune part of the PMR cycles - waxes and wanes with time - for some people. If they are reducing the pred dose at a time that it is waning they will get to a fairly low dose - but then if it activates again will have a flare. This may be the reason that some doctors believe you can manage it with shorter courses of pred. You may reduce quickly and think it has gone - but it really does often reappear just a few weeks after stopping the pred. I think maybe 4 or 5 years is a far more reasonable estimate.

      I also suspect that people who get off pred very quickly may not have had the PMR we discuss here. It is just a name for a set of symptoms and some people are diagnosed very quickly and off pred equally quickly - there are a couple of things it would fit with, including post viral problems or drug reactions. Who knows!

  • Susanne_M_UK
    Susanne_M_UK sheila28713

    Posted

    I had PMR for about 4 years and was down to 1-2mg pred when GCA struck about 16 months ago. Whether I still have it, who knows, as my pred dose is now so high that it would keep any PMR symptoms at bay.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.