This forum has empowered me with the knowledge I was definitely lacking about this PMR condition. Thanks to all the contributors for sharing experiences and little known facts about this disorder. I live in a small town in East Texas and don't know anyone with this disorder or anyone who even knows anyone with it. I love my doctor, but in 35 years he has only treated it twice and that was with an 80 year old and 75 year old. I was assuming that my experience would and should be different than those two people because I am 58, fit, strong and athletic. I had so many questions and the forums I found in the US were not nearly as educational as this one. I found that I am not unique at all. There is someone out there who has had all the experiences and problems I have. My questions were answered before I had to ask them. I read and reread everything that Eileen has ever said. Thank you so much for devoting your time and expertise to this forum. I have learned that is all about the prednisone. I was floundering with that and learned to just take it slow and easy and that it could definitely be withdrawal symptoms from the pred not necessarily not enough pred and to give it a few weeks to see which it was. I am down to 6.5 as of this week and I started this journey at the beginning of January. I prefer to be in control of situations and have found that with PMR it doesn't necessarily follow my plan and that is ok I guess. I will just keep trying and keep reading your experiences to help me know I am doing the right things. Oh, the Nosilla is Allison spelled backwards!
Hi Allison
Glad reading the forum has helped you With my first bout of PMR it went so smoothly I was lucky as I didnt have this forum then !!
The 2nd bout has been a rollercoaster and I dont know what to expect at all so the forum has helped especially the people who have really struggled but got there in the end It is difficult if your Dr doesent have many patients experience to draw on I was only 54 with my first bout and my Dr recognised it instantly even though my bloods were hardly raised (only CRP ) I was very active also Horseriding Gym Aerobics and lived life to the full When I was better after 2years I was back to normal and on my 60th Birthday I climbed Mount Vesuvius and walked round Pompeii unfortunately it came back 6 months later and it has laster nearly 3 years and I am on 5mg ( had got to 2mg !! )
Hope your journey continues smoothly
Mrs G
Hello there Allison.......and welcome. Not the place you would like to be but that goes for all of us!
I was first diagnosed with PMR getting on for 10 years ago at 57 (and had the symptoms for several years before diagnosis). If there isn't much information around now, there wasn't any then! My moment of truth came around with my discovery of some of the lovely ladies on here about 4 years ago and I haven't looked back since. I have collected a long list of ailments in my journey through PMR and GCA - not to mention the steroids, but now the magic is that all these things are being recorded somewhere and the information is there for those now looking for it.
I love it when I find members from other countries joining - it's so helpful all round to get a different perspective on all things medical. I hope you find your way to our other forum too, please don't hesitate to join in!
Nefret (aka Catie)
Hi Allison
Glad you found the site, but sorry it is because of PMR.
I wonder if you have looked at the two stickies and followed the link to the North East website. Loads of info on it.
Also a link to a forum run by the Charity PMRGCAuk.
There is also a foundation in the USA called NMR - worth googling.
Keep in touch and ask away - we will all help where we can.
Just remember 'You Are Not Alone'.
Hallo Alison and welcome.
I really wonder if we are all related on here. So often we hear, \" I was energetic, a coper, in control of my life ( not to mention other people's! )cannot accept that my life has changed ( but know we have to ). Perhaps the people who don't find their way here are different but I wonder how they manage. We all have something to offer on this site that will help other sufferers and have and will be grateful, as you are, for the help we get.
Please keep coming and very best wishes. Betty
Hello Allison and a very warm welcome...... yes, we have all been active people so it comes very hard to find legs etc do not work in the same way!
I am having a particularly hard journey with my PMR as right hip has become more and more painful and after eight months and many different scans, have been told they 'think' it is the steroids eating into the bone in my right hip ( Avascular necrosis) which has been causing the increasing pain :cry:
Have to face another scan ...... bone scan being injected with isotopes.. :shock:
So each and every one of us has a different journey to face..... down from 20mg to 12mg and doing well apart from hip and horrendous pain :?
50sgirl - I'm a bit confused at this thinking. You've been complaining of the hip pain for months - are they suggesting avascular necrosis can start within weeks of starting pred? Sorry haven't asked before - was keeping posting to a minimum whilst in the UK.
I waved from a distance whilst passing Huntingdon and Cambridge last Friday :wink: :lol:
Eileen
You and me both Eileen!!! You know what I think of my rheumy anyway and cannot believe he truly believes this is what we are now looking at :? The effusion problem hasn't gone away......
Looking forward to the 1st Sept and my appt with the orthopaedic consultant...... I bet you he will sort out the problem immediately 8)
I still believe that it is my osteoarthritis which is worsening and I need a hip replacement! Watch this space :?
Thank you for your wave as you passed! :lol:
I should call in next time ;-). Pam and I had a lovely afternoon in Whitby - it's nice to put a proper person to the picture :-)
Eileen
You would be more than welcome Eileen 8)
Perhaps they're waiting till the National Debt is paid before they admit you might need a replacement hip.
Oh dear, so cynical. Haven't mellowed with age, obviously.
Do hope you get some sense and some relief from the pain, soon, FG.
:lol: :lol: :lol:
Love it Betty E !!!!!!! Thank you.... so do I as cannot cope much longer with this awful pain......... PMR bad enough to contend with without anything else on top to cope with as we all know :?