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Starting to reduce again!

Posted , 3 users are following.

Lizzie_Ellen
Lizzie_Ellen

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

5 Replies

  • mrs_k
    mrs_k

    Posted

    Lizzie Ellen

    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
    EileenH

    Posted

    Something you'll not hear your GP tell you is how many people there are out there on longterm steroids at 5 or 10mg. I met a lady last year at Lake Garda who has been on 10mg a day for well over 10 years and will remain on that dose for life. She has an autoimmune disease that causes severe skin problems and below 10mg she can't function. There are several diseases where children are put onto a low dose of steroids for life.

    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
    Lizzie_Ellen

    Posted

    Hi Mrs K. My friend (a GP) confirms that he has quite a few patients who have been on 5mgs for years with no problems, so its slowly, slowly, if I get lower great, if I don't - almost great :lol: My Grandson Jake has taken around 20 to 30mgs of steroids every day since he was 18 months old. They're spaced out over the day (around 4 to 5 times a day depending on what his bloods say) and he just sticks them in his pocket when he's going out with his mates and almost hurls them into his mouth when the alarm on his watch goes off. He's so casual its frightening, but as its all he knows I guess its natural for him. Some of his aren't enteric coated but he never seems to have a problem. If I could feel as well as I do today for the rest of my life I would be one very happy bunny :bunny: but as I know that's a bit unlikely I'm making the most of it :magic:

    Take care,

    Love from Lizzie xx

  • Mrs_G
    Mrs_G

    Posted

    Hi Lizzie Ellen

    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
    MrsO-UK_Surrey

    Posted

    Hi Lizzie and glad to hear you feel so well. :D I'm thinking that as you managed to successfully reach 2.5 prior to Jake's illness, then you may find you can reach that level again quite easily now that the inflammation following the flare is obviously under control. However, if you do then manage to reach 2.5 successfully again, in case that is a sticking point (probably not in the absence of stressful situations) then that may be where you need to remain for somewhat longer. This was my rheumy's recommended approach when I had a flare at 5mgs - I increased back to 10 and once back down at 5 was advised to stay there for about 5 months. This approach worked very successfully - I guess because it gave the inflammation longer to really die down at the dose at which I'd previously had the flare.

    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

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