Hello
Posted , 3 users are following.
Hello everyone
It was so helpful to me to find this site, and hear about other people's experiences with PMR. I was diagnosed about a month ago, and have been on Prednisone (15mg) for about a week and a half. The pain and stiffness is much better. In the afternoons I would hardly know I had a problem. Somehow, I think I was led to understand that I could be completely pain free on the steroids and I've been feeling a little disappointed that this hasn't happened. But I understand from this site that I shouldn't expect too much - and that helps actually.
I wasn't over the moon about taking steroids, especially as it can cause depression. I have been feeling a little 'down' but that is well compensated by the lack of pain and being able to live a fairly normal life again.
Good luck to everyone and thanks for the helpful postings.
0 likes, 4 replies
Nefret
Posted
Do check out the sticky threads at the top of the list - there are other places to look at and learn from.
Let us know a bit more about you if that is comfortable for you.......I'm sure there will be others along soon to say hello and welcome.
Catie/Nefret
MrsO-UK_Surrey
Posted
It's good news to hear that you have already had a good response to Prednisolone albeit you are not completely pain-free. There are a few very lucky people who do become pain-free down through the doses but that doesn't appear to be the norm and certainly hasn't been my experience.
Like you, none of us is happy to embark on steroids. The important thing is that we reach a point where we can lead as normal a life as possible as, without steroids, whatever their side effects, we would be in a very sorry state indeed.
For a wealth of information and advice and to see other people's stories about their PMR journeys, have a look at the PMRGCA North East website - I can't quote it's full address here as it would disappear for a while whilst the moderators checked it. Also, there is a very active forum listed on the home page here as a 'sticky' - you'll find many of us there as well.
Do hope you continue to do well.
MrsO
Mrs_G
Posted
I have had PMR twice and both times I was started on 20mg of steroid and both times I was pain free in a couple of days but I dont know if that would have happened if I had started on 15mg
What I have found as I have come down the doses this time is if the dose is a bit low I will suffer a bit in the morning and be OK in the afternoon I did get to 2mg ( Ive had it for 3 years this time ) but ended up back on 5mg as at 4mg I was still getting aches in my arms for a few hours each morning and I prefer to take a bit more so I feel Ok
I always suggest to new people that they keep records of their blood results ,doseage , symptoms so that when you go to the Dr you have something to refer to If you feel you still have signifficant pain after being on them for a month ( some people do take longer to feel the full effect of the steroids ) I would tell your Dr and he might up the doesage Its a matter of having a doseage that lets you live as normal a life as possible
Best wishes
Mrs G
EileenH
Posted
You will probably find that over a few weeks there will be more improvement in the pain levels you have and, in fact, some of my pain took a few months to disappear - but then suddenly I realised it had gone. So don't give up hope yet!
Welcome and do stick around!
Eileen