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Posted , 11 users are following.
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
EileenH david60752
Posted
Regards from a 12+ year Tin Person...
david60752 EileenH
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EileenH david60752
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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 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 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 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 Nefret
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amkoffee david60752
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ricky23486 david60752
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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 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.
cindy828 david60752
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dea13 david60752
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Hi, thanks for you update and information : Very well said and helpful. Just early days for me, since April 2016 :