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janice47477
janice47477

I was recently diagnosis owed with polymyalgia rheumatic and have been prescribed prednizone. I am interested in knowing how others with this disease are doing.

5 likes, 49 replies

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  • tina-uk_cwall
    tina-uk_cwall janice47477

    Edited

    Hello Janice, sorry to hear of your recent diagnosis but welcome to the site.

    i was diagnosed with PMR December 2013 although I had experienced symptoms since the September of that year. It began with a pain in my neck and then over three months spread to my shoulders, tops of my arms, hips, groin, behind my knees, thumbs, left wrist, and finally across mychest and sternum.The pain was so bad that I couldn't sleep and my husband had to help me do everything. So in 3 months I'd gone from a jogging, tennis playing, Zumba exerciser 2 mike a day walker , dancer to an invalid and I really thought I was dying.

    then I visited my rheumatologist and after an in depth examination he told me he thought I had PMR and to take these tablets and if after 3 days I felt there was no improvement to stop taking them and book another appointment. 

    The following morning at 7.30 I stood in the kitchen with these tablets and thought to myself well, here goes! Within 4 hours I was almost back to my normal self. I remember sitting in a chair watching tv and my husband was in the kitchen to my left. He said something and I turned my head round to the left to answer him. That was the first time in nearly 3 months that I had turned my head. A little while later my husband asked me if I'd seen something or other and I said yes it's upstairs, I'll get it. I skipped up stairs and returned downstairs again with the item. My husband said, do you know what you have just done, and i said no. He said you've just skipped up stairs!! I stood for a second then just cried and Ii was at that point that I knew all was going to be well.

    I then looked up this condition and prednisolone online and cried again. I did not want to have a chronic condition and I most certainly did not want to take this horrid drug so I looked up all natural remedies but they all came back negative and so I still take the prednisolone.

    i personally count myself as very very lucky. I am only 53 and up till now had always been very healthy. Infact I hadn't been to the dr in over 5 years. I have no real side effects from the prednisolone or the omeprazole but saying that I dread to think what damage it's doing to me internally. But I live for now and so I don't really think of what damage it could do, all I think of is how it's given me back my life.

    my rheumatologist and gp are fantastic and I have pretty much been kept to the Bristol PMR plan and no matter how brilliant my blood results my GP always says, yes the bloods are fine but how do you feel. And if I have a cold sore, of which I always have many, or a cold or anything she always tells me to hang on abit before reducing. I have had 2 flare ups which looking back could have actually been steriod withdrawal so that put my dosage back ip to 10mgs but I am now down to 9 mgs and intend to reduce by 1/2 mgs and stay on each dose for a good 6 weeks.

    no matter what your Drs says it's very important yo reduce little and stay on that dose for a good 4-6 weeks do that the dose of preds can really do its work. Look up the Bristol PMR plan and stick to tea as much as you can then when you get down to 19 mgs follow Eileen's very, very slow reduction plan. I do not suffer from fatigue but I do sometimes suffer from depression but it only lasts a day or so and I'm then back to my normal self. When I say normal, I'm not quite back to hoIwas. I do plenty of walking and light dance exercise but jogging and playing tennis how I used to are still a long way off. It is important to remember that this condition is not terminal but it is very frustrating and no matter what all the websites say will take on average 3-4 years  before we even see the finishing line so it's important that we pace ourselves.

    i hope you have experienced an improvement since taking the preds. All the best, christina 

    • tina-uk_cwall
      tina-uk_cwall

      Posted

      Sorry I meant to say when you get down to 10mgs follow Eileen's very, very slow reduction plan, not 19mgs, sorry!
  • EileenH
    EileenH janice47477

    Posted

    My story is very similar to Christina's except I had had PMR for over 5 years before I got any pred - and still didn't have a diagnosis. It took 6 hours for me to be able to walk down and then up stairs. I've been on pred since and after a rather hairy time 3 years ago when I had a major flare due to the sort of steroid I had been switched to not working for me except to give me side effects I am now down to 4mg and really well.

    As you see, everyone is different.

  • linda17563
    linda17563 janice47477

    Posted

    I have come to the conclusion, that reading some of these dreadful stories of us patients with PMR...there are very few doctors/rheumys that know how to treat us, with correct lowering of dosage of pred...Do what this forum recommends, VERY slow lowering, and you won`t relapse, like many of us have, because of not knowing, and relying on ignorant doctors......(not my doctor, but rhemy was!)  If only I`d found this forum sooner.  We are all different, but the very same in lowering correctly!  Many people on here, Mrs O, and especially Irene are very Knowledgeable.....good luck...Linda
    • tina-uk_cwall
      tina-uk_cwall linda17563

      Posted

      Hi everyone, I was watching doc Martin on tv on Saturday and one of the smaller story lines was about a waiter showing symptoms of PMR. Doc Martin suggested the waiter go immediately to see his own gp. I laughed and laughed. Here is a fictional character who knew all about PMR yet many of us have real drs who know sod all about it!! Regards, christina 
    • EileenH
      EileenH tina-uk_cwall

      Posted

      What we really need is House to have it as a topic. And, even more, find a cure!!

      It used to be in Scotland that all GPs took the People's Friend and the Sunday Post so they could read what complaint was in the doctor's page - because on Monday their surgery would be full of people with it. They don't even read their medical journals these days.

  • christine_fay
    christine_fay janice47477

    Posted

    Ilove Doc Martin... wish we had one like him... however that storyline was a bit misleading... I know I can spot a PMR victim a mile off by the stance etc... but no way would one be able to be a waiter with it... I am a chef and found it very difficult to hide symptoms in the beginning and impossible now... employers just get rid of you within the first few hours of work... even supermarkets encourage me to go home and see a doc because I look as if I may be an insurance risk if I carry on shopping. There are a lot of people diagnosed with this and it should be more exposed so people can understand... It is a true disabilaty... if temporary, hopefully and people need help!
  • pat38625
    pat38625 janice47477

    Posted

    Hi Janice, I am relatively new I was diagnosed 12th November past.  Welcome to this site, they are a great bunch of people who genuinely care, you will get lots of support, advice and informtation that is invaluable.  Some have loads of experience and some have medical backgrounds.  Stick to this site and you will not go wrong.  All the best on your journey.  Regards   Pat
  • daisylazy
    daisylazy janice47477

    Posted

    Hi janice i am new to this forum .Was diagnosed with pmr in dec 14.was started on steroid (deltacortril )15mg ang gradually reduced by2.5 mg until i got to 10mg then down by 1mg. Am now at 5mg and all my symptoms are back .Dont know what to do as i have severe ostiporosis .Am under a rheumatologist but they dont seem to have any solution when steroids are gone Help
    • tina-uk_cwall
      tina-uk_cwall daisylazy

      Posted

      Hello daisylazy, you have only been diagnosed and on preds for pmr for  less than 1 year and yet you are already down to 5mgs. Most of us would say that your reduction has been on the quick side and therefore are not surprised that your symptoms have returned.

      you need to get yourself back on the dose whereby all your pmr symptoms were under control, stay on that dose for a good 6 weeks then reduce using the dead slow and almost stop reduction method.

      you should also be taking a vit d, calcium and magnesium daily supplement that will help with your bones plus daily weight bearing exercise like walking. This will help with the side effects of steroids.

      we should all be on steroids for the long term and these help to reduce the inflamation while the auto immune condition takes its course which could be 2-3 years or longer. The fact that all your symptoms have returned means that the auto immune condition is still bubbling away in you and the inflamation requires controlling by taking the correct dose of steroids and not continuing to reduce further when pmr symptoms are evident.

      regards, tina

    • EileenH
      EileenH daisylazy

      Posted

      Then you are at too low a dose - you need to find the lowest dose that gives the same result as you achieved with the starting dose. It may not be totally pain-free but is the best you get. In PMR there is not yet any real alternative to pred so other medications have to be used to deal with the side effects. Taking too low a dose is pointless, you might as well take none, the dose is either enough to manage the symptoms or it isn't, no middle way.

      If you have severe osteoporosis then you need to see a specialist for medication to sort that out. Many patients are given bisphosphonates when they are put onto pred, often unnecessarily, but the idea is to prevent loss of bone density. If you already have osteoporosis it should have been perceived as essential. There are medications that can be used to increase bone density, probably the most likely for you would be Prolia/denosumab.

      Nefret on this forum has been on pred for many years and developed low bone density so was put onto denosumab for two years and has now been told she has "normal" readings. I'm sure she will tell you about her experiences.

      Are you in the UK? The National Osteoporosis Society has a helpline which I'm told is excellent.

    • Nefret
      Nefret daisylazy

      Posted

      daisylazy, as others have said, there is no substitute for steroids for the treatment of PMR, and there is no middle road with the dose - you either take enough to hit the inflammation hard and therefore reduce pain and stiffness, or you just don't take it.  It is pointless taking too small a dose when you need the benefits to give you some quality of life.

      There are several routes to follow regarding the osteoporosis, I have been prescribed denosumab injections (twice yearly) and they have worked well for me, putting my T scores back in the normal range.

      I think you need an appointment sooner rather than later, with both your rheumatologist and with your GP so that they can begin supporting you rather than letting you flounder.

    • daisylazy
      daisylazy Nefret

      Posted

      Than you so much for your sound advice ..I had heard of the treatment you mentioned for osteoporosis so will get on to my rheumatologist for an app .The advice on this forum is invaluable .So looking forward to getting my life back as everyday is a nightmare .If i dont post again before Christmas i wish you all a very happy one and health for the New Year .By the way i live in the Republic of Ireland .
    • daisylazy
      daisylazy EileenH

      Posted

      Thank you Eileen .Ilive in the irish republic .I am so grateful for all the good advice on this forum and will certainly be following your advice about the steroids and getting sorted with medication for osteoporosis .Will let you all know how i get on .

       

  • Elijo
    Elijo janice47477

    Edited

    I was diagnosed November 3 with PMR, severe stiffness, my MD started me on 40mg. prednisone (20 early AM, 20 after lunch, and have had a remarkable response.  Dec. 1 he will lower it to 30mg. daily, and I hope that will be sufficient.  I have my life back.  This came on suddenly, I couldn't reach for anything, difficulty dressing, getting into a car, getting out of bed, etc. There was terrible stiffness and pain which did improve a little during the day.  I attribute mine to severe stress--I'd hurt myself kayaking in August, I had a terrible fall in Madrid, Spain when my husband and I went on a tour inSept.and "lived" on 550 naprosiyn twice a day, causing swelling of feet, etc. There was a death in my family then, and also a difficult court case,  all of this within a short period of time.  Now I'm feeling great, do have some frequent cramping in my hands, forearm and ankles, but can bear that.
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