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Does PMR ever go away?

Posted , 7 users are following.

Lizzie_Ellen
Lizzie_Ellen

I think I'm a pretty classic PMR case. Started on 15mgs in September 2009 and after a bumpy start the symptoms started to reduce in November. December's bloods showed my CRP down from 36 to 5 ( :D ) my ESR has always been normal. I've now cut down to 12.5mgs and going on to 10mgs on 1st Feb. So far, so good. Being an avid reader of this site (especially during my enforced hibernation due to snow!) I'm rather coming to the conclusion that PMR is here to stay - I haven't read of anyone having PMR and eventually coming off steroids and getting back to normal. My logic says that if you've recovered from PMR and are totally off steroids, you wouldn't bother posting on this site, my common sense however is telling me that the Doctor and Consultant are keeping quiet about the chances of me recovering completely. Any reassurance would be great but if its likely its here to stay then my plans to visit Machu Picchu for my 65th birthday (I'm 63 at the moment) might have to be brought forward or reappraised.

Lizzie Ellen

PS: (snowed in again last night - getting very boring now, hope others are doing a bit better than we are).

0 likes, 14 replies

14 Replies

  • Linda_Williams
    Linda_Williams

    Posted

    |Dont despair Lizzie I know of a lot of people that theirs mums or someone they know have had it then it eventually goes away. I have had it for 18 months and have been on 5 mg for quite a while. Will start reducing soon below. I think people who have it and goes away just dont log on and tell people. When (stay positive ) I am free of PMR then I will definately log on and tell you all to keep up moral. My new years resolution is to stay positive and try and get below 5mg. IT WILL GO AWAY EVENTUALLY. You will go to Machu Picchu even if you have to go on steroids, but hopefully youi will be free of PMR.

    Keep your chin up.

    Regards

    Linda x

    • Nan7849
      Nan7849 Linda_Williams

      Posted

      Did you ever experience hair loss from Prednisone 15 mg daily?

      Also did you ever take advil daily with it?

    • Linda_Williams
      Linda_Williams Nan7849

      Posted

      Hi nan 

      yes i did handfuls very worrying but then settled. Just thinned my hair down. For info. I have never managed to get off steroids completely got down to 1/2 mg three times week after 5 years then it flared up. I am now on maintenance dose of 1mg per day and doubt I will try and get lower. What I don't want is a full blown flare up. Hope you are doing ok x

  • Lizzie_Ellen
    Lizzie_Ellen

    Posted

    Thanks Linda,

    You're thinking along the same lines as I am, that if you've managed to recover from PMR you just get on with your life and don't bother with blogs. When we're off the steroids we'll make sure we keep telling people who are still battling with it - agreed? I feel I'm being very well looked after by my Consultant, I'm reducing the steroids after just a few months and feeling well. Don't much like my 'chubby cheeks' as my Grandson calls them, but as my partner says, much cheaper than Botox!! Thanks again for the encouragement.

    Lizzie Ellen :D

  • Linda_Williams
    Linda_Williams

    Posted

    Hi Lizzie

    Agreed. As from Monday I am going to start reducing below 5mg I am going to take it very slowly. Will keep you informed.

    Take care.

    Lindax

    • Nan7849
      Nan7849 Linda_Williams

      Posted

      Hi Linda

      Do you remember hair loss with the medication? Also does everyone loss hair because of it?

    • Linda_Williams
      Linda_Williams Nan7849

      Posted

      I do remember hair loss got better in lower dose No no everyone gets hair losd
  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hi Lizzie Ellen - Despair not......as Linda has said, there are many people out there who have recovered from both PMR and GCA. The lady who runs the Suffolk/East Anglia PMR Support Group recovered a couple of years ago after about 5 years of treatment, and, of course, you will have read of Ragnar's recovery in Sweden over a year ago.

    So stay positive and add my name to your's and Linda's (good luck on the Monday reduction, Linda) on the list of people who will post their recovery on this site - in my case, you'll probably see the flags flying outside my house if ever you are in the Ashford area, in which case pop in and have a cuppa!

    As the roads had improved, I drove into Kingston yesterday and walked around the Bentall Centre shopping mall for some safe exercise as our pavements were still dangerous - my first outing in 6 days. My Tai Chi class also recommenced yesterday but, alas, has now been cancelled again today. Do hope it isn't another 6 days of enforced hibernation.

  • Mrs_G
    Mrs_G

    Posted

    Mrs G Im not sure if it goes away or not After my first bout which was textbook and lasted 2 years I had 3 years of a completely normal busy life Then it returned In the Jan of that year I had a bad flu chest infection and had antibiotics I then again had a reallly bad throat infection in the March I had managed to walk all round Pompeii and climbed Mount Vesuvius on my 60th Birthday I then in the April had the familiar shoulder pains Straight to DR did blood tests but gave me a prescription straightaway but I felt better so when I went to see her she was relieved I hadnt used it as my blood results were spot on I then had a normal summer lots of work including helping to spread 10 ton of stone in my field drive !! I think I had another throat infection and in the September more pains bloods up higher than my first bout and back on steroids from October started on 20 mg now after getting down to 4mg I am up to 10mg again 15 months later As you say if people no longer have it they probably dont log on any more I live in hope that if it goes away it goes for good !! Mrs G
  • julian.
    julian. Lizzie_Ellen

    Posted

    there's a thread on this forum somewhere for people whose pmr has gone into remission.

    Looking forward I believe the pmr will go away. In a few years time when I look back I may well have been wrong. But so what.

    And goals, like Macchu Picchu, seem to be important to me.

    The more positive I feel the more I do. Self fulfilling.

    • hindags
      hindags julian.

      Posted

      I'd love to fine that thread and read those stories.  At 75+ I'm thinking I won't have it all that long anyway. LOL.  First bout last December. 15 for two weeks then 20 now tapering .5 per week.  Will be at 15 in two days.

      At this point in my life I just am glad that I can manage what I've accumulated by way of conditions, either by myself, with the help of professionals or with medications.  Hopefully with as few medications as possible.  I don't know what brought it on for me, but I do know I do more than most my age.  I think I've pushed myself beyond my warning signs that it's time to quit.  I look back now and wonder whether pacing myself better back then would have avoided all this now.  I look forward ane wonder if I've learned my lesson well enough.  Will someone here remind me?

    • julian.
      julian. hindags

      Posted

      here's Club Zero

      https://patient.info/forums/discuss/club-zero-562652

      I've got another 10 years before I catch up on you. And then it will still be 10 years.smile  And you'll still be wondering, and I'm guessing still doing more than most your age.

      I suspect I can't change the past (I tried once and failed), I can only look forward to doing as much as I can (and maybe just a little bit more .... smile wink.

       

    • hindags
      hindags julian.

      Posted

      Thank you for the link.  Sorry it has taken so long to reply.  Life has intervened.  
  • Linda_Williams
    Linda_Williams Lizzie_Ellen

    Posted

    I have had PMR for 8 years A few  ups as stated I am now on maintenance dose of 1mg per day. Over the years PMR has not stopped me from doing anything we have been all over the world take my steroids with me if it flares up manage it,  I cannot say PMR has affected my life at all except maybe in the beginning when we didn't know what it was.   PMR started when I was 58 the only thing that I think linked it was a very bad cold then chest infection.   Stay positive do what you can enjoy your life. There's a lot worse things we could have xx

     

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