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CATME
CATME

Morning all,

Friday I was told by my GP following blood tests that I could have PMR, was handed a prescription  for Prednisolone with a link to a website and told to come back in two weeks. You may notice the lack of any other information given to me. My mobility has gone down hill in the last 8 weeks the mornings are worse so much pain, and unable to turn in bed like my muscles have lost their strength.

I was given anti inflammatory tablets but I still cried with pain and frustration this morning.

I have read lots since Friday and I guess I am in for the long haul with PMR. Normally I am a very active and flexible 62 year old, currently working full time, now my 85 year old Mother in law moves better than me. Really not keen on these steroids and 20mg seems a lot, but I will stick with it for two weeks.

I would be keen to hear about any dietary advice, particular exercise and has anyone tried acupuncture?

So far I have not had to take any tablets and hate taking them now.

My respect to those of you who have suffered with this for so long, I really admire your resilience to keep going.

I would be grateful for any advice.

 

0 likes, 51 replies

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  • BettyE
    BettyE CATME

    Posted

    I'm sorry you are in so much pain. I think you should let your doctor know. 20mgs. is the usual starting does ( some doctors say 15 ) but if that does not significantly reduce the pain then you may need more.

    However, today is Saturday and you say you were diagnosed on Friday. Does that mean yesterday or Friday of last week?  If yesterday then it may be another couple of days before the Pred. begins to control the inflammation; if last week then you really need to see the doctor sooner than two weeks time.

    Was the handout NHS Inform? This was given to my sister and I thought it quite useful. If not, and you'd like the link, pleas reply and lest me know and I'll send you a private message ( little envelope top left ) with the link. I can't post the link publicly, it's against the forum rules.

    • EileenH
      EileenH BettyE

      Posted

      Betty - is it an NHS website link? If so you should be able to post it - NHS is allowed these days!
    • BettyE
      BettyE EileenH

      Posted

      Here we go. Let's see.

      https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/polymyalgia-rheumatica

    • EileenH
      EileenH BettyE

      Posted

      Funny - wonder why it hasn't come up as a blue link like the one in my post? But copying and pasting it into google works...

    • CATME
      CATME BettyE

      Posted

      Hi BettyE

      I only started the Preds today but I have been on anti inflammatory since Tue, now advised to stay off the anti inflammatory and  if I need to can take paracetamol. Think I was just tired not had much sleep in two months and resilience is low with the pain. Feeling better tonight and ready again to take this on, I guess you have strong days and not so strong days. I will check out the website.

      Thanks for responding.

       

  • EileenH
    EileenH CATME

    Posted

    Most of us have been in your position - before PMR (at 51) I had never even taken painkillers! I do love how helpful GPs can be - rheumies tend to be even worse!

    20mg is a standard starting dose - although 15mg has also been used for years, may be enough and you could try taking that the first day. It worked a miracle for me in 6 hours but not everyone responds as fast as that. However, a 70% improvement in symptoms is to be expected in the first week at most. Some things improve faster than other - the stiffness goes first I think, can't really remember! Just the absolute wonder of being able to move easily! The bursitis I had took a few months to go - but then, I had had 5 years of PMR with no treatment! And antiinflammatories, other than pred, do nothing at all for PMR. Pred - no you're talking!

    Have you found this post?

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    It is our reading list collected in one place. The NE PMRGCAUK site is particularly good I think (though I am biased) with their archive of newsletters with a lot of info for PMR patients.There are also patient stories to encourage you.

    Where are you? There are local support groups across much of the UK and if you can get to one you really do realise you are not alone.

    • Rudivl
      Rudivl EileenH

      Posted

      Hi Eileen - do you know if there is a support group currently meeting 'down south' in the UK please?  I'm near Southampton..... I think I pinged someone a message from the list a couple of years ago when it began but I didn't hear back?  

    • EileenH
      EileenH

      Posted

      Should have scrolled further down!! Southhampton...redface
    • Rudivl
      Rudivl EileenH

      Posted

      Thanks Eileen. I think I contacted Southampton but didn’t hear back and they aren’t showing any info. However Port Solent has meeting dates and is also fairly near by. Thank you. RD
    • CATME
      CATME EileenH

      Posted

      Hi EileenH,

      I live in Essex, will check out local support groups had not thought of that.

      Funny I mentioned the PMR to some people and they said oh! 

      Thanks for the link, I guess it’s a case of do my own research build up information.

      Thanks for the support.

    • EileenH
      EileenH CATME

      Posted

      To a great extent we have done the research for you - after 9 years on the forum and in the charities I've probably read/learnt more than any GP and sometimes it feels than many rheumies! And there are a lot of people on the forums who could say the same. The links are reliable - a lot you find on the internet is nota and many doctors still labour under the delusions that PMR only lasts a short time and once you are on pred that is the end of the prblem, you are back to normal and can do everything you want. No it doesn't and no you aren't - the pred just manages the inflammation to allow you a relatively decent quality of life with a lot less pain.

      But you may not be totally free from pain and the real illness that underlies the symptoms we call PMR, an autoimmune disorder that makes your immune system attack your body in error, is chugging away in the background and making you feel as if you have flu on a permanent basis. You need to learn a new way of life - rather slower for the moment at least and always remember that the fatigue of a/i disease can strike any time if you try to do more than your body can manage and that your muscles remain intolerant of acute exercise. You have to get into training for any activity - and that means starting from a pretty low level and building it slowly, far more slowly than you have before. 

      There is always someone who has been there before on one or other of the forums and pretty much 24/7 - there are members all over the world - but remember that some people will make suggestions that don't apply to you in the UK because you simply can't access it. And just because someone else manages a, b or c doesn't mean you will. It is all about accepting you are where you are and learning to adapt and accommodate the PMR. Google "the spoon theory and the gorilla in the house" and read the rarainbow link which illustrates very well what I'm talking about.

      And when you have a question - ask.

    • elizabeth16550
      elizabeth16550 EileenH

      Posted

      Hi.  I am new to this forum.  I live in Kentucky, USA.  You are so correct about what you said.  I was diagnosed 8/2017.  PMR and GCA.  I thought I was an odd ball.  Never heard of this disease. I was an athletic,58 year old, healthy women.  Even walked/camped the Grand Canyon in 5/2017 rim to rim.  I found this forum 3 days ago...WOW!!  it has changed my out look, especially my mental state for the better.  Being on Predizone has been a true challenge.  Getting off of them is even more.  My medicine has a unique situation.  Actempra was approved in 5/2017 for GCA.  So not only am I dropping my predizone, I am also taking an injection once a week of Actempra... Anyone have anything to say about their experience?.. I was able to drop from 60mg(Aug.) to 10mg (Jan) with not relapse.  And at that time having NO REAL UNDERSTANDING OF WHAT I WAS DOING and HAD.  The first of February I was dropping from 7mg to 6mg.  The pain came back and I had to go back up  to 15mgs of Predizone!!!  I did not understand this... Then I found this forum.  After reading everyones response and EXPERIENCE... I have a better understanding of what happen and how to avoid it.   Thank you , Thank you for being open about what we all are experiencing.    I DO NOT FEEL ALONE ANYMORE!    
    • EileenH
      EileenH elizabeth16550

      Posted

      If you want info from others on using Actemra for GCA/PMR you would be best starting another thread so more will see your post. The search function on this forum is useless or I would suggest looking for past threads. The PMRGCAuk forum on HealthUnlocked has a lot of people using Actemra and it is much easier to search for specific posts.

      I gather some people don't manage to get off pred altogether even with Actemra - but they do get to a much lower dose. 

    • Joydeck
      Joydeck elizabeth16550

      Posted

      If you do wish to search for Actemra on this forum, cut and paste the string below into the search box at top of this web-page: 

           Actemra OR Tocilizumab AND GCA AND PMR 

    • EileenH
      EileenH Joydeck

      Posted

      Thanks - I obviously forgot the ors and ands...
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