1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

History

Posted , 11 users are following.

david60752
david60752

    Hi, it has been a little over a year since I have participated in a discussion on this site. I do not get on the computer often, but I feel that since it helped me when I first got here to this site, a couple of years ago, that I should shed some light on my experiences. I was finally diagnosed with PMR 11 years ago. Blood test never showed any unusual  inflamation, but after trying many things, I doubled my dose one weekend of 20mg pred. to 40. Finally for the first time I felt normal. I call PMR "tin man disease" because I think when you have it it feels that you need some human WD-40 to take away the pain. I am currently a 65 yr male, and 11 years ago I suddenly felt like I was 98 yrs and I could hardly move. I won't bore you with all the details, but over the last 11 yrs I have been up and down with pred, even off for over a year. I have never had any side effects that I know of, and I have had two bone scans and all is well. From my experiences I find that if I can stay between 3 and 4 mg that things adjust to normal. I hear other people seem to suffer side efects, but sometimes wsonder if that might be other issues. I recently started tapering down from 4 mg starting in June, 2 weeks ago I was down to 1 and started having pain again in Nov. I have tried over the 11 yrs to come off pred and finally decided that if I feel good below 5 mg, 3 currently, that I am never going to try to go lower. It is not worth it. If you have had similar experiences, with no side effects, my advice is to accept a low dose and stay there. I also used to get numbness and tingling in my hands and arms, diagnosed as carple tunnel, but I think it is related to PMR as it also stays away on a low dose. I hope my experiences help some people understand a little more from someone who has been dealing with this issue for over 11 years. Good luck to all with Tin Man Disease. Low dose pred.= human WD-40.

0 likes, 12 replies

12 Replies

  • EileenH
    EileenH david60752

    Posted

    Good to hear from you David! I was perfectly happy at 5mg - and would have stayed there for life but the PMR had other ideas and flared. Back down to 10mg and contemplating another go at 9mg! But it is winter...

    Regards from a 12+ year Tin Person...

    • david60752
      david60752 EileenH

      Posted

          Hi Eileen, so much for my theory about staying on less than 5 mg. Still, try to get back to 5. All my research shows that under 7 mg is best for no side effects. Ask your Dr if he knows of something like human WD-40. The poor tin man in the Wizard of Oz!
    • EileenH
      EileenH david60752

      Posted

      I wonder if it is just PMR? What about trying Flexiseq - which I have described as WD-40 for joints in the past! It's for OA really but a few people on the forums have tried it and swear by it!

    • mark9992
      mark9992 EileenH

      Posted

      Eileen,  you practice DSNS do you not?  I would have thought that on that strategy that you wouldn't have had to jump back up to such a high dose?  I'd be interested in hearing more if you care to.  thx.

      mark

    • EileenH
      EileenH mark9992

      Posted

      I don't just practise it, I "invented" it!  But there are two primary reasons for a flare.

      One is that you reduce too far or too fast and cause a flare. That is what DSNS is aimed at avoiding as well as identifying your ideal dose most accurately.

      The other is that, at a steady dose, the activity of the underlying autoimmune disorder increases. That was what happened to me. I'd been fine at or around 5mg for nearly 2 years and then I had a flare - not so much of PMR symptoms but more likely GCA-related ones since they involved chest symptoms and severe breathlessness on even slight exertion. That was the conclusion the GP, the specialist and I came to was the only answer. We none of us realised what it was at first - cardiac problems seemed obvious but that was all ruled out. And then about 3 weeks into it all I started developing the familiar PMR symptoms. It took 15mg to manage the breathlessness and stuff - which was a bit scary to say the least!

  • Nefret
    Nefret david60752

    Posted

    I've got secondary adrenal insufficiency anyway and will be on a low dose for life. I have had some serious side effects some of  which will always be with me, but never any further problems  once I am below 10mg.

    Greetings from a (nearly) 16 year Tin Person.

    • david60752
      david60752 Nefret

      Posted

      Maybe we all develop a problem with the functioning of our adrenal gland as a result of long term pred. use
  • amkoffee
    amkoffee david60752

    Posted

    I hope you plan to come back on to read these replies because I think we all have some important information to share regarding your post. I think the reason your carpel tunnel is not acting up is not because it is really PMR but because the pred your taking is reducing all the inflamation in your body including the inflamation brought on by the carpal tunnel. Just a thought. I am glad that you are having a good response to the pred your on and it would seem that your case of PMR is manageable for you. That is good news. Thanks for posting the update.
  • ricky23486
    ricky23486 david60752

    Posted

    It was interesting to read David's post - Tin Man's Disease sounds about right !

    What resonated particularly for me was the realisation that it is ok to just stay on a low dose that keeps the PMR under control - we all want to get off the steroids - but it is not always possible  - feeling 98 years old sounds familiar - when I stopped the steroids for a month a friend whom I hadn't seen for a year took one look at me and suggested that I use a cane!  Eileen got me back on the steroids and now I am prancing around - normal - pain free - and fully functioning  and earning my living again.  I think one  problem is that our well-meaning physicians can make us feel   inadequate in continuing to need steroids - and I think that they really don't understand that the pain of  PMR  turns us into non-functioning beings.

    Thank you for your contribution - it was encouraging.  

  • MrSolo_UK_Lancs
    MrSolo_UK_Lancs david60752

    Posted

    Hi & good morning David, Almost 2 years since I noticed the very early symptoms of what turned out to be PMR. I initially put it down to be part of the ageing proccess & carried on life as best I could. June 2015 things came to head, body had siezed up to a point where I could hardly walk or move around. Saw my GP who straight away diagnosed PMR but would not prescibe the Prednisolone until seeing blood test results, both CRP & ESR were sky high. Started on 30mg. with immediate benifits to mobillity, but my whole body became irritable & tingley. I have tapered the Pred. down slowly & have been on 6mg. since July 2016, I have still have the same irritable tingley feelings 24/7, but I am able to carry on with all my every day activities. Recent full MOT blood tests showed CRP 4 & ESR 2 so all would appear OK. Tried mini taper down to 5.5mg couple of weeks ago which resulted in a pretty bad flare, back to 6mg now & thats where I'll stay as things have settled back down. Back to the irritable tingley 73 & bit year old body that works not too bad thank you very much.

  • dea13
    dea13 david60752

    Posted

    Hi, thanks for you update and information : Very well said and helpful. Just early days for me, since April 2016 : smile 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.