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Just be diagnosed with PMR

Posted , 4 users are following.

mandy40337
mandy40337

I am a 53 year old female with osteoarthritis in my knees for about 6 years. I have regular steroid injections to keep the pain at bay, but usually my appointments are delayed so Im in agony for a lot of the time. When I started feeling unwell in my joints and muscles a few months ago, and couldnt sleep for the additional pain - painkillers and tramadol have unfortunately not even touched the sides - I was sad to find that I now also have PMR on top of waiting for my knee replacements. I have read all sorts of stories about the side effects of steroids, and wondered, before my GP has organised things for me, does anyone have any innovative ideas on how I might manage my pain without resorting to steroids.

1 like, 8 replies

8 Replies

  • Nefret
    Nefret mandy40337

    Posted

    I've also got osteoarthritis and am waiting for hip and knee replacements - hip first. 

    I entirely agree that painkillers don't touch the sides of the PMR pain and sadly I have never found anything other than steroids to relieve it.  However, for various reasons (not all PMR) I have now been taking steroids for almost 14 years and I haven't crumbled yet.  Not only that, I have a fairly good quality of life which is limited by the osteoarthritis, not the steroids.

    The scare stories about any medications are always the ones which hit the headlines, but if you read any leaflet in any drug pack - even OTC ones - the list of side effects is always worrying.  Paracetamol is not without it's side effects and is often far from the innocent medication they claim it to be, or ibruprofen or even aspirin.

    However, no-one is going to get all the side effects listed and some don't get any - as with any other drug in the world.  Neither PMR or steroid taking is one-size-fits-all, on the contrary it will be as individual as you are. 

    Have a look at the pinned threads at the top of this forum page.  There are other sites to visit and learn from and there are a couple more forums where you will get support whatever you decide to do.

     

    • mary68968
      mary68968 Nefret

      Posted

      Hi,

      Just a few thoughts.  I had hip replacement about a year and had a surgeon who did the anterior vs. posterior surgery.  Please google them & see the differnce.  It is a thousand times easier surgery & my recovery was very fast.  Also I have had cortisone knee injections, but just after hip surgery I had synvest injections (it's a filler) & have had had to go no further.  My aches & pains have gotten better with predisone.  I know of no other drug than predisone if you have PMR, but some of your other pains may not be as painful afterwards.  That has been true for me.  My knees have been fine & did not require surgery.  Good luck.

    • Nefret
      Nefret mary68968

      Posted

      Yes, in some cases steroids do help osteoarthritis where the damage is causing inflammation, at times that has happened to me.  However it's by no means the general case and steroids are not given for OA alone.

      Thank you for the information, I'll have a google!

  • erika59785
    erika59785 mandy40337

    Posted

    Mandy,

    Unfortunately, only steroids take the awful pain away.  I tried alternative resources, but they have not helped.  I do take calcium, magnesium, vitamin D, also vitamin C daily to offset the problems wich Prednisone will cause on a body and joints.  Magnesium Citrate (capsules) helps for sleep and relaxes body and muscles.

    You are VERY young to have to endure this!  I am 74 years old, and my PMR did not start until just recently.  I had ----and still have to deal with RA----which is not quite so debiliating than PMR!!!!!  I hate it.

    I hope your GP can guide you through this!

    All the best,

    Erika

  • Nefret
    Nefret mandy40337

    Posted

    I was diagnosed at age 57, but had been hassling the doctors for some years before that.  I had a gradual onset which began in my early 50's.

    Even the medics agree that the onset is apparently earlier these days.  I say apparently, but I know that until very recently PMR was considered to be an 'old person's' disease and I suspect that the 'rheumatics' complained about by my grandmother's generation was PMR and its other friends in autoimmune conditions.  It's only now that the generations have caught up and are able to express themselves and are sceptical enough to not believe that the Doctor knows everything.  Certainly my grandmother thought the doctor was God and what he said went! 

    We are finding that we still need to educate the medics on occasion but we are beginning to win and there is more research being done in the background than ever before.  Not one of us likes, or wants to take, steroids but they are still the only effective medication and we are trying to solve that problem.  Just haven't quite got there yet! 

    • erika59785
      erika59785 Nefret

      Posted

      You are so right!  I have an appointment with my RA doctor on Tuesday, and I will tell him in a nice way that I cannot taper down by 5 and after 5 days. it needs to be more gradual like 10 % monthly.  I have noticed that the "speedy" way does not work and I am back to square one.  Of course, we all would not want to be on cortisone but this is the ONLY medication which takes the darn pay away and makes life more livable.

      Thank you for your input, Nefret.

      Erika

       

  • mandy40337
    mandy40337

    Posted

    Thanks for replying. Much appreciated. I suppose that when my grandmother and mother was my age, they 'seemed' older, but as people today lead busier lives, we think we can go on and on. Its only in the past few years that I have begun to realise my limitations, even thought I feel young. Ill am going to do some homework on here to help myself, so that I am well informed so that I know what to expect, and try to turn this into a positive, rather than feeling sorry for myself. I know that there are a lot of people out there suffering one way or another, so I shall count my blessings and get on with it.
    • EileenH
      EileenH mandy40337

      Posted

      I too was 51 when my PMR started and it was ignored by GPs and cnsultants alike for 5 years - and even then it was disputed because my blood results have never been awry and I was "too young". However, the miracle pred wrought suggested that PMR was the right answer!

      If you follow this link you will find the first post in the thread gives you further links to useful sites and another forum. The final link is to a paper aimed at GPs when managing PMR. Further on in the thread (posts 4 and 5) is the reduction schme I and many others have followed successfully to get their pred dose dose far lower than with any other type of reduction.

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

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