Starting to reduce again!
Posted , 3 users are following.
Hi Mrs G.
Thought I would reply to your kind enquiry on here as the other site is so busy I sort of get lost! I stayed on 5mgs whilst in Spain, tried a couple of times to go to 4.5mgs but ached all over and didn't see the point of laying on the beach feeling miserable 8) However, since coming back I've dipped my toe in the 4.5mgs bucket and all seems to be well. I tried it once last week and had no reaction at all so will be trying it twice this week. Then I think I'll double my reduction time by doing .5mg over 14 weeks instead of my usual 7. Does that sound a bit whimpish? I'm not in any hurry and I feel so well just now that I don't want to rock the boat. Last time I got to 2.5mgs and felt great until Jake had his op and I went to pieces :lol: Pathetic Nannie or what, but I managed to go no higher than 5mgs. Isn't 5mgs just so comfortable :magic: I've done four days in the garden doing really heavy work, first time I've been able to do that for almost 2 years, so I consider myself very lucky just now. Making the most of it!! I have also felt so much better since I dropped the Omeprazole - I would keep going into a sort of trance and wondered why, but since dropping the Omeprazole it hasn't happened once. Have a lovely day in the field, say hi to my birthday friend and I hope your appointment with the doc goes well!
Love from Lizzie xx
PS: Sunny and hot again here in Basingstoke (or Braisingsteak as me daughters call it!)
0 likes, 5 replies
mrs_k
Posted
Not wimpish at all, the slower the better, it seems to keep the awful withdrawal symptoms away or to a manageable level.
As I have been told, 5mgs - if you have to stay there, its not a problem. You keep that as a bench mark, keep trying to drop very slowly, if it does not work - go back to 5mg asap before you have to go higher. Some people never get below 5mg and beleive it or not, we had a query about non-enteric coated tablets from someone who does not have pmr or gca and has been on steroids for 55 years; at, guess what 5mg. Been on them since age of 2 years old.
Made me realise, I just pale into insignificance in the great scheme of life.
EileenH
Posted
Yes, longterm use does mean a need for consistent monitoring and high doses do so as well. And the combination of higher doses and long term use does pose problems. However, the whole idea is to creep down until you find that low dose at which you can function which will be probably 1/2mg above the dose at which the aches start to come back. If that dose is below 7.5mg/day there should be little to worry about - and my rheumy in Italy regards 9mg as a reasonable longterm dose. At 5mg your body will eventually get back to making some of its own cortisol to top up to the physiological level (what your body makes anyway). If I get to 5mg I won't be panicking to get off. At present I'm back up to 15mg - and thoroughly enjoying feeling well, no pain, no stiffness and less fatigue. Plus I have feet and hands back that are normal - not pudgy swollen ones from the PMR which return as I reduce the dose below 10mg.
Eileen
Lizzie_Ellen
Posted
Take care,
Love from Lizzie xx
Mrs_G
Posted
Pleased to hear you are feeling so well Im with you and the slow reductions and will wait until I see what the Dr thinks before I do anything else I was feeling great on 2 for a while but this illness does come back and bite you !!
My Dr said to me last year that there were a lot of people on a permanant maintenance dose of 5mg so I may have one day to accept that I would certainly accept it if it would never come back in all its force !! The only thing would mean still being monitorred forever !! I didnt see the Dr at all when I had my gap in between my 2 bouts of PMR in over 3 years so i was well once !!
My sister in law has been on 5mg for I think at least 6years She started on 60mg for her illness and the idea was Methatrixate would take over but it never has completely and she refuses to give up her steroids !!
Hope your reductions go well
Horses very hot and fed up with the flies at present They will be glad when the weather changes !
Best wishes
Rosemary
MrsO-UK_Surrey
Posted
Oh, I hope you can understand my ramblings - I know what I'm trying to say but don't know if I've made it clear - blame it on the heat! :wink: :star: 8)
When you hear about youngsters like Jake, what have we got to complain about?! Just so glad he's well now. :D