Hi I was diagnosed on wed. I've been given 15mg of pred for a fortnight to try. Fingers crossed after over 2 years of back and forth to the drs things will start looking up. I'm 40 and my dr said I was quite young to have pmr xx
I started having problems when 40.Diagnosed by rheumatologist age 45 when I was given a large steroid injection in gluteous maximums and see how I got on.Brilliant within 18hrs was able to get on hands and knees and clean skirting boards. Plus as added bonus hayfever was not too bad that year.Good luck-12years on am in middle of 4th major flare (I had been warned that in my case I would never get completely rid of mine)Really hope you are one of the lucky ones with just one episode
Welcome Claire - and while it's not fair to have PMR at any age and 40 is young there are increasing numbers of younger patients. I believe that in the past patients under 50 (and some over) have been fobbed off with all sorts of things - fibromyalgia, depression, "your age", imagination (though that was rarely said aloud), to mention just a few!
Here's some reading if you haven't already seen it:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Looking forward to hearing how you get on with your trial of pred.
Thanks very much Eileen x
Thank you. I have been having problems for over 2 yrs so I'm hoping now I've have a diagnosis and on the steroids it will help. Only on day 3 of the steroids and I can notice a difference .
That is good news and some on this site e.g. Eileen and Ptolomey are very knowledgeable
That's interesting - what was the rheumy's reasoning behind that warning?
I've said somewhere else today that i've had PMR for well over 10 years, suppose it is over 11 now and in that time have had 2 major flares but I don't think it has ever gone away in that time. My first real PMR symptoms were at just 52 but it had been there for months beforehand and the fatigue had been there for years.
I am newly diagnosed as well and I am 49 so yes it does happen. The first rheumy I saw basically refused to treat me because she doesn't think it can occur in someone this young. Have an appt for Monday to see new Rheumy. Welcome to forum and I wish you success with pred.
Hi Eileen,to be honest I don't knowI just presumed it was because of the early onset or the severity.Atleast it made me not expect a miracle so was never disappointed and pleased with whatever improvement came my way.Just delighted that although incurable is not fatal or life shorteningIt makes you slow down and smell the roses so to speak
I have read texts that suggest that the younger you are the harder course the illness may take. As I say, in my case the fatigue probably started in my late 20s when I had something that resembled the "herald illness" that is common in ME except ME was still "yuppy flu" then so the diagnosis (6 months later) was "must have been a virus"! In my 30s the sweats were keeping me awake and a pro-active gynaecologist decided to try HRT - which helped enormously but I eventually stopped taking it after yet another scare. Within a year the PMR had started. Now they are saying again that the benefits of HRT outweight the downsides - if I had stayed on the HRT would the PMR never have started up? The pred achieved a miracle in 6 hours - I could suddenly manage stairs properly instead of going up on hands and knees. So that fits with PMR rather than the hormonal cause of the symptoms which can happen.
Have you been on pred the whole time or do you get off only to have to start again soon afterwards? I think I'm going to have a discussion with my GP about sticking at 5mg where I feel really great - 4mg is OK but not quite as good. I asked for a synacthen test last month - she was quite non-plussed and said she'd have to find out! I don't like in the UK though so I can't hand her a load of publications etc as she doesn't speak English.
I am in the U.K. and have been on and off steroidsI go to GP when I know I am having a flare.Recent one which I am still in had to come off them and rheumatologist has put me on methotrexate;12 weeks in and touch wood kicking in so have substantially reduced painkillersNot taken it this week as got a couple of infections and hospital says immune system is overloaded.Got to phone later after get swab result to see if I resume next week.GP wants bloods done again in 3weeks so having fun timeLOL
Interestinger and interestinger! How much is the mtx helping? I have met two people for whom it was the means of getting off pred - but I'm not convinced that what they had was "pure" PMR, if there is such a thing. Two others got their pred dose down a long way initially but then both had major flares - that make mine look child's play! One even developed GCA and believes the mtx let it creep in under the radar.
Now that I have been living through this nasty disease in its full-flower I believe I have had symptoms for many years. For example I can barely remember a time when I was not stiff when I got up in the morning, thnking that was normal, and when I was given physio exercises for my back to be done morning and evening I wasn't sure that I would be able to do the morning ones. (I can.) I had a diagnosis of osteoarthritis in hands when I was about forty and always put down any aches and pains elsewhere to some sort of development of that disease. It was only in the last couple of years that I began to wonder why the pains seemed to be in my muscles, not my joints. I can't believe how dim I was about all this. It was when I began to become disabled that I finally sought help, and even then it took a year to get a diagnosis.
Eileen, I am down to 5 mgs - again! How long do you personally expect to stay on 5 mgs?
Thought I'd try 4 1/2 in 3 weeks, but not so sure.
Hello Eileen, please could you explain what a 'synacthen test' is. I haven't heard of that.
The methotrexate has been amazing but still early days.Am on 25mg /week and ESR and c-reactive protein never been so low for agesHope typing this doesn't tempt fate LOL
A synacthen test is a test that shows whether your adrenal glands are capable of again taking over the production of the natural corticosteroid that the body makes and is essential for life. As long as you are taking above about 7mg pred they don't make any as that is about the equivalent of what they would make. For some people it is higher, others lower. But as you reduce the dose you body must make it again to make up the shortfall. In some people they don't start to function properly again - and it is a great help to know that before trying to reduce to zero which could make you ill. It's just an injection that stimulates the adrenal glands to produce some cortisol and that can be measured to see if it is the right amount or not.
Which to me suggests it might not be plain and simple PMR you have - even if it was initially. There are a few people who think it can morph over time - but one autoimmune disorder can attract another or, I suppose, turn into another. Maybe you'll be better on long term mtx than pred?
If I go to 5mg Constance it will be an increase from where I am now - but I know I feel best there. How long do I expect to stay there? If previous experience is anything to go by - a long time! If I stay there for life I don't care as long as I feel well. I don't think it will faze my GP too much either - loads of people take 5mg pred for life for other things.
Thank you Eileen for explaining the Synacthen test, that's very interesting. I am at present on 10mg of Prednisolone for PMR. I have been reducing on your very slow method from 15mg since July 14. I have been taking it very very very slowly as I had a very bad reaction initially when I dried to go from 15mg to 12.5 in one go and I was really poorly. I don't want to experience that again. I am now about to try and reduce to 9. I understand that you shouldn't reduce by more than 10%. Would you advice that I now reduce on the slow method by 0.5. When I have reached each lower dose I have stayed on that dose for six weeks and it seems to be working for me. I wanted to stay on 10mg for 12 months like the Bristol method recommends but my Rheumatologist doesn't want me to do that as the Prednisolone has upset my Diabetes so I have agreed to carry on reducing as long as I could do it slowly. I would appreciate your advise and indeed any advise from other sufferers. Although I do want to reduce I am very apprehensive as I am doing well at the moment.