Being fairly new to PMR- diagnosed in July- I was put on 3omg of pred. This worked miraculously. Since then I`ve reduced by 2.5mg every two weeks and am now on 25mg. The thing is the pain is gradually coming back, though not severe, and I`m prepared to put up with that so long as it doesn`t come back in my head. What I want to know is- are we supposed to stay on a high dose to stay totally pain free? I can`t wait to get rid of steroids, the weight,the sleeplessness etc. Some of you are obviously still in some pain. I`m reluctant to tell the doctor it`s coming back. Went on Monday for my latest blood resulta and the path lab hadn`t done the ESR. The CRP was normal though the white blood cell count was up. I`m finding it all very confusing. I guess I`m impatient and shouldn`t be when I hear what so many of you have put up with.Thanks for being there. Shebob :cry:
Hi again Shebob
My experience with GCA was that when reducing fairly rapidly from the high dose of 40mgs, the head pain went immediately together with all the other related symptoms of GCA which I had such as jaw pain, vomiting, nausea and weight loss. I was given the rheumatologist's secretary's 'phone number should any head pain recur. However, the PMR symptoms did not clear as quickly and, in fact, the hip and top of leg pain has never completely disappeared (especially immediately after reducing a dose) and I remember mentioning my stiff knees to the consultant on many occasions. Although not as bad now on alternating daily doses of 4/3.5 mgs at present, I am still waiting for that magic day when my legs feel mine again!
As regards your raised white cell count, that was also an issue with me but, again, that will normalise very soon.
It's good news to hear that the CRP has returned to normal, and maybe you can ring the GP to see if the ESR results are now in to further put your mind at rest.
So stick with it - it's very early days for you yet, and remember without the steroids we could lose our eyesight due to GCA, and without the steroids we could be in severe pain and possibly totally immobile due to PMR. It's so frustrating I know but just keep those thoughts in mind to help you get through these early months
I wish you many good days not too far ahead, Shebob.
MrsO
Thanks so much Mrs O for your reply. The doc took another blood test so I`ll have to wait till next week for that. But hearing your experience has helped me to understand what I should be expecting. As you say the eyesight`s the most important no matter how huge we get. The doctor has never suggested that I have Temporal arteritis though it was my head and blurred vision that took me to her. I was having physio for frozen shoulder at the time with no effect. Actually I think she`s quite pleased to have me `cos I don`t think she`d had another case and I get the feeling that she`s reading up on it all! The more doctors know the better. Thanks again and have a painfree day ! Shebob
Shebob
Mrs O has spelt most of it out for you.
However can I just add that it may be of benefit to both you and your GP if you visit www.pmr-gca-northeast.org.uk a website run by a support group. On that site you can read up about pmr and gca and also download any information on that site. Under Resources you will find a BSR document issued June 2009.
Like Mrs O, I would say to you - without steroids, partial or total loss of vision can occur it is not reversible.
You are on a sharp learning curve and this site will prove to be a life saver at times. And its great just to have a moan and ask the daft question.
Thanks Mrs K . I went on the website you suggested and found it very informative. As you say I`m learning all the time and i do think It`s up to us find out as much as possible and perhaps even pass things on to our doctors. After all they can`t be experts in everything, though I think mine has a damned good try bless :wink: her ! Shebob
Hi shebob,
I was diagnosed in Nov'08 with GCA and started on 60mg, I am now on 8.5mg but everytime I reduce if the pain comes back I go back to the previous dosage, the slower you reduce the better I've been told but like you I can't wait to get rid of the steriods. I keep telling myself I can lose the weight, catch up on sleep, sometimes I just want to stop taking the steroids but I know they are helping me, sometimes the cure is worse than the illness but in this case how do you put a price on your eyesight.
Sorry if i'm going on a bit rough day today.
regards
pekabar
pekabar
Sorry you are having a rough day.
You say you 'cannot wait to get rid of the steroids'. pekabar, they are standing between you and loss or partial loss of sight and once that occurs, it is irreversbile.
These illnessess come when they want to and go when they want to - and there is nothing we can do about it as currently there is no known cause and no cure for either GCA or PMR.
That is why a dedicated charity, (just formed 29th March this year) called PMR GCA UK has been set up. Specifically to aid and raise funds for more research into cause and cure and to set up support groups throughout the UK.
So please remember - Steroids are not a cure, but they stand between you and the loss or partial loss of your eyesight and as you say 'what price eyesight'. The price is steroids and all that comes with them.
Side effects - grim - but nobody I know has all of them.
Listen to your body, go with the flow, when you are tired, take a nap. don't fight it - it just makes you feel worse. Try and adapt to a new way of living. We only get one shot at life - so make the best of it and keep grumbling like the rest of us do on this site.
Good luck and I hope you have much more bettethan rough ones.