Hello dear parient advisors.I am currently in my 4th year of PMR and have been slow tapering between 7/7.5 mg prednisolone for about 5 weeks (following a flare protocol treatment at 5 mg).
My symptoms were manageable at 7.5 mg but worsened when I attempted to reduce to 7mg slowly, pain in joints, tingling in muscles all over. So I'm sticking at 7/7.5 mg on alternate days. Attempts to extend the 7mg days by one day each week leave me with the same pain and discomfort, so not really sure where to go here. Starting to worry about steroid dependency, especially at my age. Rheumy gave me a cortisol blood test form to get that test before my next appointment end of November, (I was then in a happy place at 5mg prednisolone 6 months ago) but now believe dose is too high for this test to be useful. Should I tough it out on alternate days or stay on 7.5mg for longer.
Thanks for listening. It's a tough journey isn't it. My rheumatologist said 1-2 years for this disease, guess I'm just not getting it right. Thanks for any input. I don't know what we'd do without you. X
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waltztherapy
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No - your rheumy was the one who didn't get it right!! The 2 year thing is a myth and has been discussed a lot recently.
You need what you need to manage PMR inflammation and currently that appears to be 7,5mg. Whether you become "steroid dependent" is fairly meaningless and immaterial - either you take enough to manage your symptoms or you end up back where you started if you don't take enough pred. Don't ever try to tough it out with PMR - it will always win,
I've been on pred for 16 years, I could only get down to 7mg by my rheumy here in Italy putting me on Actemra, a biologic, I'm not worried about being steroid dependent - too busy living,
PMR is not self limiting. It often goes on for more than 2 years. I was on steroids for six years and have since been on them again for one period of 12months and currently again coming up to 11 months. I am female and 71 years old. I do 130,000 steps a week and swim a mile nearly every week and that is despite all the steroids I have taken. I am currently on 4.5 mrs per day. If I stopped tomorrow, I would be in pain. Steroids are the only thing which really work for PMR pain and allow you to live a normal life. There is no RIGHT way of doing it. You just have to go with how you feel. If reducing steroids means you are in pain, go back up to what ever dose makes you feel normal. And if your GP doesn't agree, maybe see a consultant privately. I did and he sorted me out on the correct dose immediately. I know it costs money you may not have, but if you can spare the cost of a private consultation and you check the reviews and credentials of the person you could see, it could just help you in the long run. My GP wanted me to take 5mgs a day.......not nearly enough. The rheumatologist put me on 12mgs. Oh the relief! It was the start of my journey back to a pain free life.
I can only speak from experience and I have had PMR on and off since my fifties. But I am still here and reasonably fit. Please don't give up. A pain free life is what we all deserve and steroids can give you that. Yes they affect your bones, but you can take calcium and if you are pain free, exercise.
GPs are great but they have to cover so many things, they can never be an expert on all of them. Go with how you feel, not how someone tells you, you will feel. PMR often goes on for years, BUT it doesn't have to make your life miserable. You just need to take the right amount of steroids......which will allow you to exercise and keep fit and strengthen those bones, instead of struggling to do everyday tasks. Don't give up. You will get better. It just may take a few years before you are off the medication.
PMR is not self limiting. It often goes on for more than 2 years.
In most articles from eminent rheumatologists PMR is described as self-limiting for the majority of patients. Unfortunately many articles also quote the 2 year timescale, which we know from the forum is not strictly correct. It may be for some patients, but for many it isn’t. It can last 4 years, 6 years - even longer.
Just because you have to a recurring type of PMR , doesn’t mean everyone does.
Sorry I didn't mean to imply that everybody has recurring PMR. I live in an area with lots of older people and have met others with PMR histories like mine. But I know we are all different and just because I suffer from PMR, I do not consider myself an expert. What I like about this website is that everyone can discuss their personal situations and not feel alone. You get so little time with a GP these days, this is a good place to get some insight into the illness. I remember when I was referred to the rheumatologist, all he did was write some numbers down on a piece of paper, his guide to how many steroids I should take per day over the coming weeks/months. His main piece of advice was to get below 7mgs a day. He told me my PMR could last for 1yr, 2yrs or longer and that was pretty much it. After that I was just left to manage it on my own. That was probably 20yrs ago. I would have loved to have had this website to go to but of course sadly such things did not exist then.
They did actually - Patient was set up in 1996, though they didn't have patient led forums right from the start as far as I know. However, there were two, one for PMR and one for GCA fairly early on and 5 ladies "met" there. An early action was to get the two forums merged as they realised there was more connecting than separating them. And that was the start of the PMRGCAuk charity really as those 5 ladies worked to first get doctors involved, then the NE of England charity was set up fairly soon by two of the ladies, possibly almost 20 years ago, which had its own forum after a few years, before this one was set up by another of the 5 for the PMRGCAuk national charity.
There had also been a couple of forums in the USA, the lady who started the NE of England charity had been active there and met a Swedish gentleman, Ragnar, who was actually the originator of the concept I used to develop the DSNS slow tapering idea.
The US forums folded long ago and Patient became unusuable as they changed things without regard to the fact it made it so slow and difficult to read for patients and over time fewer and fewer used it. Users there migrated here until this has become the biggest English language forum, probably in the world.
It's good to read what you say, from first hand experience. It's a little more difficult to have the same hope when reaching the age of 80 and flareups persist. Like you, I like to be sufficiently pain free for my exercise regime, to dance three times a week, table tennis once a week and walk every day, all to a lesser degree depending on the level of pain. I believe any level of exercise is helping to keep me mobile, so your story is very encouraging, thankyou!
I am amazed at how much exercise you do. It's just brilliant. Never give up. Some of us may have flare ups for years but as long as we don't have pain (or at least not too much pain) we can still get on with our active lives. I bet there are people half your age who are nowhere near as fit as you are. So stay positive and keep dancing!
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