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My PMR has returned!!

Posted , 3 users are following.

Mrs_G
Mrs_G

I first had PMR in 2002 when I was 54 Luckily my Dr recognised it early on but my blood tests were not standard as my CRP was higher than my ESR I had to see a Rheumatologist (privately as the pain was awful ) and after about 16 blood tests he confirmed PMR I started on 20mg of steroid and within a year I was down to 2mg My case was 'text book' as I was clear in just over 2 years My Dr was excellent and my steroids were never reduced without blood tests and monthly moniterring I did get quite down and very tired as had been very active before This year I started with flu and antibiotics then several colds and sore throats and earlier in the year thought it was coming back but this was a false alarm But I have also done lots of heavy physical work this summer so dont know if I have overdone it but was taking quite a lot of ibrofen and paracetamol as was aching WhenI developed a rash I stopped the ibrofen and deteriorated rapidly blood tests confirmed it is back ESR is up as well as CRP but luckily 20mg has proved enough to stop the pain So here we go again !! I was very pleased to find this forum and all the information contained in it Trying to rest at present so it keeps me occupied I do think that unless you have had it it is hard for someone to understand how debilitaing it is

0 likes, 7 replies

7 Replies

  • Guest
    Guest

    Posted

    Hello Mrs G

    What a disappointment for you after being free of PMR for 4 years but at least the 20 mgs are working yet again and hopefully you will prove to be another text book case, as you put it, and get through it quickly to the point of a full recovery again. Maybe the inflammation stays dormant in the body and something triggers it - do you think the 'flu may have been the trigger perhaps in your case? In my case, having suffered from undiagnosed PMR for a year, my rheumatologist believed that a change in my blood pressure medication triggered GCA, which is linked to PMR, and the diagnosis of GCA confirmed therefore that I had previously been suffering from PMR which then returned alongside the GCA. Now nearly two years down the line from GCA diagnosis, on 5mgs, having been up and down on the dose, therefore not a text book case like you. Yes, this site is certainly very comforting especially when you are more stuck at home having to rest and talking to other people with the same problems - a trouble shared is a trouble halved. Good luck and hope you feel more full of beans soon.

    Mrs O.

  • Mrs_G
    Mrs_G

    Posted

    Yes I think it is always with you and WHEN I get over this I shall be a bit more careful about overdoing it physically I was considering having the Flu jab this year but after reading that some people feel they got it after that I have changed my mind !! Other people seem to think it was after an operation or trauma I suppose at any time your defences are down I hope you continue to improve also I am just hoping not to get too many side effects from steroids !!
  • mrs_k
    mrs_k

    Posted

    Mrs G and Mrs O

    I am sorry to see that a recovery has been made and then a relapse. But as Mrs O say, someone is always here.

    However there is an international survey for pmr & gca patients online at google International Survey pmr+gca or scroll down on pmr and the heading is International Survey. For some reason, althouhg I am logged in, it will not let me post the website address here. If you could take a few minutes to fill it in - it would be helping yourselves and others.

    The survey was devised by patients for patients and the results are free to anyone in the world who applies for them. There is research taking place in some places, but most surveys are low - so we thought an international one would be of assistance to looking for cause and cure.

    If you care to email, me via this site, there are six support groups for pmr and gca suffers currently operating in the UK. Hopefully there will be more in the future. Maybe you would like to join one if they are near to you geographically.

  • Mrs_G
    Mrs_G

    Posted

    Havent replied to anyone as have been away for some sunshine !! My cold I had for 3 weeks disappeared the first day !! My 20mg of Prndisolone seems to be working but obviously it will be my blood tests early next mont which will lett the true picture Will start looking at the questionaires and surveys now I am back Not sleeping well and feel a bit hyperactive but it is so great to be pain free !!
  • Guest
    Guest

    Posted

    Dear Mrs G

    I read your account with interest. I am about 1 year older than yourself and, like you I was pretty text book. A little older than you when diagnosed (57) and it lasted for 2 years almost exactly. I too have had several colds/ soar throats lately and have been wondering if my PMR is returning as I seem to have some of the symptoms, but at the moment am still trying to convince myself that it is just normal aches/pains of older age. But it did interest me to see that your condition returned after some bouts of fru/colds/soar throats.

  • Mrs_G
    Mrs_G

    Posted

    Well I hope yours hasnt returned as mine did !! As I said early last year about end of March I felt it was coming back and went for blood tests only for all the symptons to disapear before I even had the results !! Continued to have sore throats last summer off and on and also did lots of physical work and was taking lots of Ibrofen and paracetamol telling myself it was another false alarm but it wasnt and my Doctor did say I should have come back for blood tests quicker as my results were worse than the first time around Unfortunately it is not going so well with reductions this time and I am on my 3rd time of trying to get down from 7.5 which didnt happen the 1st time Each time I could reduce and my blood results were good So dont delay if you feel it is coming back as definately better safe than sorry Its easy to put things down to age !!
  • Sioux
    Sioux

    Posted

    Return episodes are a PMR sufferers worst nightmare. having had two bouts and recovered, at least now I feel as thought there is hope and with rest and pain management the PMR will ease.

    For me, it meant that eventually I had to give up work, but I haven't looked back and now realise I was pushing myself too hard.

    Self care is vital with PMR

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