Fingers Crossed
Posted , 4 users are following.
My fingers are crossed whilst I type this (a feat in itself :lol: ). After 9 whole weeks of feeling really well after a pretty miserable year, the visit to my Consultant yesterday confirmed my hopes that things are looking up. ESR 5 CRP 2 - she was delighted. I'm staying on my (very) slow reduction and she doesn't want to see me for 6 months unless I have a flare-up. I started back at the gym on Monday, took it very easy and had no ill effects. My last two attempts were dismal failures!! Part of me feels guilty, posting how well things are going, but then I think back to when I felt so ill and I was really encouraged by people who were starting to feel better. I hope my post will help anyone feeling a bit down just now. I know how unpredicatable PMR is and I know there will be setbacks, but I'm making the most of my present good fortune. I asked the Consultant what were the chances of getting off the Prednisolone completely and she said about 70%. I'm keeping my fingers crossed that this spell will last (and last).
Lizzie Ellen
PS: The gym is just as boring as I remember :zen: :zzz:
0 likes, 8 replies
Mrs_G
Posted
Delighted to know you are doing so well and if this slow regime works it is well worth following it I hope your bout of PMR is like my first one and just goes on its way But if it does dont do what I did and overdo it as I didnt realise at the time it could come back !!
I too am ( fingers crossed ) doing well and just going down to 5 now I am going to be brave ( I think !!) when I get to 4 and try the alternate day therapy as I have decided !! that my adrenal glands didnt want to start last time when I got to a low dose Most of the information on adrenal glands seem to be on American web sites
I am going to start a remedial exercise class after my holiday and a diet not feeling good about myself at present but dont think I will start any harder exercise for a while
Hope your progress continues and it is good to hear sonmeone is doing well
Best wishes
Mrs G
mrs_k
Posted
Do me a favour and visit www.pmr-gca-northeast.org.uk and read Under Useful Information
Steroids and what they do
A narrative written by a patient for patients. It talks about the Adrenal Glands.
I would be grateful for your comments, either via here or email or via the site.
I am so so pleased for both of you and may you both continue to improve.
PS We also accept articles from Patients to put under 'Our Stories' and are always looking for the good news as well.
Dublin,_Ireland
Posted
I'm with you on the gym....always found it tedious :wink:. I am lucky that I live near the sea so always found a brisk walk along the prom far more interesting( our prom is about a mile long), and until I got PMR I played golf 3-4 times a week aswell. Continued good luck to you with your reduction and thanks for letting us at the start of our journey with PMR know that there is an end in sight... :D Best wishes, Pauline, Dublin.
MrsO-UK_Surrey
Posted
MrsO
Mrs_G
Posted
Thank you for that I did read it some time ago possibly when in Jan Feb I was feeling to ill to go anywhere and chained to the computer !!
I had a chat with my Dr about the alternate day therapy to kickstart the adrenal glands again and she was quite for the idea as she says she knows there are many people who do get stuck on 5mg for life Because of her very positive attitude to steroids I have never been frightened of them and she is very thorough with all the checks I have to have and I will never forget with my first bout of PMR crying turning over in bed in the morning and if I sat anywhere even waiting in the Surgery for my appointment I walked like Dick Emery in high heels when I could eventually get up !! until the blessed relief when I took the steroids for the first time
With my first bout I reduced with no problems but this last time it hasnt been like that and when I got to 4mg I hit a brick wall which is why I am considering either alternate day therapy or the very very slow reduction programme on the website Decisions Decisions !! Dont want to make the wrong ones as might set myself back again
Best wishes and thanks for your helpful advise on the forum
Best wishes
Mrs G
Linda_Williams
Posted
Dont feel guilty your comments made me feel better I have just increased to 7.5 tried fighting it on 6 then 6.5 but not a lot of improvement. I had got down to 3.5mg after 2.5 year battle. I feel I am back to square one. But I do remember one of your posts when you had got down quite low then after a flare up you had to increase. So there is light at the end of the tunnel, but it does not seem like it sometimes.
Keep well.
Linda
Lizzie_Ellen
Posted
I'm sorry you've had to increase the steroids, it must be disheartening. I've never had to increase my dosage (well, not yet anyway!). I was on 15mgs in September 2009 and with the regime I'm on (and if all goes well) I'll be off them by next June. When I saw the consultant on Wednesday she said that 7mgs and then 3mgs are often sticking points with her patients, so she was pleased I'd got down to 6mgs without any problems. As I've said before, it was as though someone flicked a switch about 9 weeks ago - I just woke up and felt better. I'd coped with the pain and the stiffness, it was the utter fatigue and the feeling of not being 'quite on the planet' that I found really hard to deal with. I asked the consultant if confusion and fatigue were common with PMR and she 'oh yes, very'. She said I may never get off the steroids completely but not to worry, just get as low as I can. We'll see. I haven't made getting off of them completely a must, I'm aiming for under 3mgs if possible and see how it goes. I do hope this recent flare-up soon settles down. PMR's very frustrating isn't it!
Regards Lizzie Ellen
Linda_Williams
Posted
Must have mixed you up with someone else (blame the steroids).
I should not moan really 7.5mg is still not a lot but when you get down to 3.5 mg disappointing. I did take the reduction really slowly 1/5mg every 6-8 weeks but that it how it goes. Will move forward now and wait to plan the next reduction will get there in the end.
Regards
Linda