I've suffered from pmr since 2004 at 42, i was lead to believe it would burn itself out, i started on 80mg of prednisolone after 2yrs of not getting passed 15mg i was put on sulphursalazine which wiped my white cells out i was in hospital for 2weeks in isolation, so i was then put on methotrexate 15mg once a week, i have just got down to 7.5mg 1 day 5mg x 2 days i can feel twinges in my shoulders and if i do to much at work i ache like crazy. I've read on this site that it can come back, \"great \" I'm sick of being on medication, well thanx for this letting me have a moan nobody understand how bad you are because you look so well.
So sorry to hear about all the frustration, misunderstanding and pain - it is good to have somewhere one can have a good gripe to like this forum where at least people understand. I have only had PMR such a short time I hardly feel qualified to comment but it does seem to vary so much from person to person (misdiagnosis?), doctors seem to know so little, and also there are days when one just feels so hopeless and miserable (more often are a sleeplessnight in my case) and other days when the sun shines and one can do a bit more. I have endless questions which kind people on this site help with. You're not alone - keep going! Treat yourself to something you like now and then is one of the best things I was told! In my case it was a good friend who took me to something called \"Senior Screen\". For £3 we got to see Mama Mia, have a large cup of coffee - AND a biscuit ( normally avoided by me). OK I was very stiff when I had to get out of my seat but it boosted me for several days! Green Granny
Dear Christine
I'm so sorry you've had such a bad journey and at such a young age! How I can empathise and yet Ive only had PMR for a year and I'm a few years older than you at 50. I too am fed up with this disease that no-one knows much about and everybody assumes that as you look well then you must be. They've no idea of the pain and stiffness, the aching and the fatigue. I get so frustrated that I can no longer do what I want without thought when I feel well - I can't go off on long tramps with my dogs or get stuck in and start digging in the garden. If I decide to throw caution to the winds and go for it then I am made to pay the next day or days, sometimes weeks.
I'm sorry to hijack your \"moan\", but it is good to rant sometimes, where others understand!
(((((Hugs))))) Jak x
I was very shocked to hear how high a dose of steroids you started on I have never heard of anyone having that high a dose I hope you see Doctors and Rheumatologists reguarly and are given frequent blood tests Yes it is a horrible illness ( Im on my second bout of it ) as everyone thinks you are lying as you look so well !! Ist time around I was text book just over 2 years Started on 20 mg and reduced by blood tests everytime 3years free and here we go again This time I started on 20mg in Oct now trying to do 7.5 one day 6 the next This is my 3rd attempt at this !! I would agree with Green Granny that one bad nights sleep seems to set me back and I do try and rest if I have done quite a bit I keep telling myself that I could have worse illnesses and my symptoms are minor compared to yours for so long but it is hard sometimes not to get depressed and this forum is great for a moan with people who understand I have no idea why some people seem to burn out like I did the first time around and why it seems to linger with others I hope you will feel better soon
thanx everyone for listening, i think i started on a high dose because id suffered for 6mths before i got a diagnosis i thought i was going to end up never going back to work i couldn't move without the help of my husband,i was off work 10mths all together, (thankfully my DR retired) i saw another DR who did a simple blood test my ESR was very high he started me off on pred after a few visits and getting on the high dose i could move again. yes to your question i see my Dr and rheumatologist regular i have blood test every 4 wks and i am due t have another bone scan in 5mths, thanx again for being there.
Ooooh, can I join in? I agree, Christine, the worst thing is that you look perfectly all right, when in reality you hurt like hell all over and can barely walk. I still have friends (?) today who persist in thinking that I could \"snap out of it\" if I wanted to (after eight years). Have you asked your doctor if he can supply some additional pain relief? I've had acupuncture and massage in the past with very good results, unhappily it's now not available in this area (except at a price!). I have now got a medical referral to the local gym and had the first real session this morning - think my shoulders and legs are on fire, but oddly enough I feel better in myself, just hope there isn't a kickback from it. I'm currently struggling on 5mg daily, reduced since last September from 15mg as I have a lot of steroid-related problems. Until the last few weeks I seemed to be doing OK, but the last reduction seems to have been one too many. Take it day by day, I wish you well.
So pleased to hear you are being well looked after medically as I seem to read so many reports on here that people are left to reduce their own steroids without blood tests I felt great this morning did quite a lot today and now feel tired enough to lie down and sleep !!! It is so frustrating so I think we can keep on moaning and I am also sorry you have this at such a young age I was told I was young when I got it first at 54 !! Best wishes for a better quality of life soon
With regard to blood tests my rheumatologist said they were a waste of time as our symptoms are the best indicator of inflammation levels.
Jak