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Weaning from Prednisone

Hi all I've been on Prednisone for a year now & every time I tried to wean would have a flare up. Well after 5 weeks of weaning slowly I'm completely off. However I feel like I've been hit by a bus. Legs & shoulders ache, rain isn't helping I suppose. I'm also very emotional. I'm pretty sure it's the prednisone. Any suggestions to move past these symptoms quickly. I'm just taking Tylenol for the pain. How long will these weaning side effects last? Thanks for any response.

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  • tim79598 steelctygirl

    Hi, I have been on a corticsteroid for over two years. I had to stop it along with my MTX for about a month prior to surgery and wow was I a basket case. After surgery I am on it again, but only 3 mg a day. I may try to go to 1.5, but slowly and maybe do something like 3/1.5/3/1.5 and alternate. My rheumatologist says you have to listen to your body. Plus Tylenol is bad for the liver over long term use, so I try not to take it at all. Hope this helps.

     

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  • EileenH steelctygirl

    I don't think you CAN "move past these symptoms quickly" - you are asking your body to speed up its physiological processes.

    I don't know what your dose was - but 5 weeks isn't "slow weaning" - many of the people on my home forum, all of whom are on pred for years often, take more like 5 months to get through the last 7mg. While you are on doses above 7mg, or thereabouts, your body stops producing the body's natural corticosteroid, cortisol. It is essential for various physiological processes in the body and without it you become very ill, may even die, lack of it leads to Addison's disease. The adrenal glands which are responsible for its production take a considerable time to wake up again - it isn't just them, it is the pituitary and hyppothalamus production of various hormones that has to start up in a very complex feedback set-up. The slower you wean, the better your body is able to catch up.

    So until  your body DOES catch up - you will experience these feelings. It is usually said it takes up to a year for your body to settle down completely. And I'm sorry, there is no way to speed up the process. When we carry a steroid card it is for these reasons - and you should continue to carry the steroid card for up to a year. Any stress, whether it is trauma, infection, emotional or physical stress makes it more apparent because it is the corticosteroid that helps us cope.

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    • EileenH steelctygirl

      In the UK anyone on pred is meant to carry a small blue card saying they are on longterm steroids and giving the current dose - it is for the benefit of healthcare professionals should you be taken ill. Even on a low dose like that your adrenal function is compromised and you could develop what is called an adrenal crisis which, as I said, can potentially be fatal if it isn't recognised. The card is the evidence if you can't tell them. Since you say prednisone I assume youa re in the USA? No idea if they have a similar

      At 5mg you should still have had some adrenal function but you can't be sure how good it is. It will improve - but if you start feel really ill don't hesitate to call the emergency services and tell them. 

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  • meg83590 steelctygirl

    Someone very wise did some researched on the most effective withdrawal and posted this withdraw example on this site several months ago. Sorry i can't find it now but she explains that you need to go very slowly and mix the old dose with the new lower dose. It worked for me it took me 6 months to withdraw from 8mgs Aso give it a search

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  • sonya78375 steelctygirl

    Hi!  I completely agree with all that the people below have said.  I was on 15 mg prednisone this time last year for RA, and my rheumatologist just said go down 1 mg a week until I can't.  I had several stalls at 7mg.  The very hardest was 7-6 6-5 5-4 4-3, for me - causing pain, but not so much for the last 3.  However I did have to then stop my newly restarted running routine because I was just gobsmackingly exhausted.  Could not summon the will to move, which didn't even happen when I was severely disabled with RA pre meds.  So that was for about 5 weeks, but I slowly came right.  It only took until about 3 weeks after completely stopping to feel tons better.  I can now run nearly as well as before RA and diagnosis a year and a half ago.  It feels truly amazing to be off prednisone!  Prednisone was extra hard for me because I am a type 1 diabetic and had to inject a whole extra type of insulin for my body to deal with it.  

    You will have your own pattern but hang in there, I think you should be feeling much better in a few weeks if it works for you like for me.

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  • tony35673 steelctygirl

    I was on 25mgs, now down to 4.75mgs, at the moment I'm tapering 1.4 mg weekly.   Hope to be off it soon.   I'm on a pretty hefty dose of pain killers after having my right superior and mid lung lobes removed.so I take advantage of that as it allows me to wean a little quicker.   Of course, there will be a price to pay when I wean of the pain killers as well, but I wouldn't fell right without pain now!

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  • tony35673 steelctygirl

    My Rheumatologist wrote a program for me after I got down to 15mgs:   from 15 down to zero in four weeks.   Can't remember the exact numbers each week but the first week was 15 - 10.    I threw it in the bin and laughed all the way home.   Doctors have no clue!

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