Prednisone reduction slowly from 50 to 10 ...back to square 1

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Was doing well on the journey down from 50 mg of prednisone now at 10.

SYMPTOMS BACK ... getting up in the am challenging .. major stiffness in the am

will check with Rheumatologist when i can but my question is.. shall I see it through on the decrease as it is manageable after 11am in the morning or ask him to bump me up a bit as I dont want to do... my goal is to get off the steroids but not at the risk of damaging my joints

i move like I AM 90 until 11 am then I Feel pretty normal ... so can with stand morning stiffness if it is a means to an end

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  • Posted

    Dear Sunny1919

    I think we all get hung up on getting off the steroids - I know I did, and I think it is an admirable objective, however this concern sometimes overrides what is best for us. I was fortunate in going down from 20mgs to zero in two and a half years, however at each reduction I suffered a minor regression for a few days and then got back into my stride again.

    When I came off completely I did suffer from some stiffness of the joints, but I checked the web for what can happen when steriods are reduced and it told me to expect almost the same symptoms as I had with PMR!!! So I have persevered and stayed off them. It is about 6 weeks now and my symptoms are - like yours - irritating in the morning, then OK later on except when I get up from being seated for a time. Then I walk like I'm 90!

    Overall the peace of mind of coming off the steroids makes this tolerable for me, others will warn of the danger of inflammation in the body???

    I have commenced Tumeric and curcumin daily which I believe is having a beneficial effect, together with large doses of Vitamin D3.

    I hope you can continue your progress, without too much anxiety, good luck Chrisbox

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  • Posted

    I'd say it was a sign you may be about at your limit for now - if you continue with the reduction it will build once you get much lower and you may end back where you started. Chrissie is in one situation - you are 10mg behind and it is a bit different so I wouldn't push too hard. It does take a while for the stiffness to fade once we are off pred but it is for a different reason.

    This is giving me mixed messages though - 50mg is a GCA starting dose but you complain of joint stiffness?

    PMR does not damage joints - it affects the various soft tissues around the joints which is what makes you stiff, and it can inflame the synovium, the lining of the joints but doesn't damage it.

    However, you are not aiming relentlessly for zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did - but having started at 50mg that isn't really a good guide as 50mg is high enough to manage PMR-type symptoms due to a whole raft of other causes.

    Something you could try is splitting the dose, maybe 2/3 in the morning and the rest later in the day - that takes the antiinflammatory effect to/over the full 24 hours. That may well give you a much better morning for the same total dose. Then you can work on reducing one or other until the morning stiffness reappears - it may not do of course.

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    • Posted

      thanks so much for your lengthy reply .my GP started me on the high dose while waiting for me to see the rheumatologist to give

      me some relief

      we have been reducing

      very slowly and things

      were ok til i hit 12.5 ...and worse when i hit 10..makes my sleep really intermittent that is why i dont split the dose ...NO GCA according to rheumotologist Thank GOD

      We dropped by 5's til 30 and rhen by 2.5 til 10 ...i was on each dose for 2 weeks and now at 10 1 mg a month

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    • Posted

      The basic rule for comfort is not more than 10% of the current dose at a time - so from 20mg you have been above that limit with 2.5mg at a time. That may be the problem since 12.5 to 10 - that was 20%. And ever 2 weeks is too often, at least 3 and preferably 4 weeks between to let your body settle down. It isn't a race.

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  • Posted

    Boy, can I relate! I started at 40 mg about 2 years ago....gradually got it down to 20. Have tried to reduce to 15, which works for a while, but then I begin having pretty bad pain and have had to go back up to 30 for a day or so, then back to 20. I just took my fourth injection of Actemra, which is supposed to reduce my need for prednisone. The last few days I am pain-free, so I am going to reduce again to 15 mg tomorrow and see how I do. I absolutely hate the prednisone's side effects. I have had terrible weight gain, am now a bubble-face fat boy. I have had a wound on my leg after falling on an escalator on new year's day. The wound will not heal because of the prednisone. It still causes me great pain some nights and keeps me from sleeping. All this is just a pain in the petooty. Some great researcher needs to come up with a good alternative to prednisone without the side effects. That person would make a fortune as people like us would flock to that product.

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