1. Community
  2. Skin and nails
  3. Steroids

Trying to get off prednisone

Posted , 5 users are following.

connie_49995
connie_49995

been on prednisone for over 6yrs for farmers lungs ,been on high doses as Long has 8months Has never been able to get off ,just dropping I get swelling in the soft tissue in my body eg my head imp rears hearing ,cause  palups in sinuse ,lungs swell ,kidneys  swells ,can't control my blatter , hold body sweats ,body pain as if I were in a car accident ,up my does & it all goes away but it make my sugars go up , gain 60 pounds I have got ossidiiopreos from it ,need to get off this please help 

0 likes, 28 replies

28 Replies

Prev
  • anapp
    anapp connie_49995

    Posted

    If it were me, I would stay on the15 for at least two weeks to a month before you reduce if you are feeling good, but I don't have your diseases so I don't know if that's a good plan for you or not.  I wish your doctors were being more helpful. 
    • connie_49995
      connie_49995 anapp

      Posted

      Back down on 10mgs for for some time now. Breathing well ,have had lots of body aches  , all most all gone ,now ,  felling very tied . going to give it some time . When  energy  comes back I will drop by 1mg a month . Hoping not to get sick , I hope this works 
  • anapp
    anapp connie_49995

    Posted

    Glad to hear you are improving on the 10 mg.  Hope it keeps working for you.
    • connie_49995
      connie_49995 anapp

      Posted

      Now at 8mlgs felling sick short of breath if I move to fast or left anything ,flue like symptoms it's been a month , pressure in head is gone hearing is back . Not going to tapper any further until felling well ,do not see lung specialist until Oct 

    • ptolemy
      ptolemy connie_49995

      Posted

      Under 10mg you need to take it slowly when you reduce. Half a mg a month is a good level to aim for. You will find when you get down to around seven, eightish you will start to feel tired as your adrenal glands are having to start working. A symptom of PMR is a fluey feeling, so you need to ensure that at least the pred is keeping the inflammation under control. 
  • anapp
    anapp connie_49995

    Posted

    Connie, I have had some bad withdrawal symptoms in the past and I was tired on every reduction, not just on the low doses.  I have to agree with everything ptolemy said though. I think he/she gives good advice.  Also I found that there were just certain doses that were difficult to get through on the way down.  Example...maybe 5 was was tough, but when I got to 4 it was better.  Not sure why that happens but my Rheumy indicated it was pretty comon.  As mentioned earlier on, I am doing the "dead slow" method from 1 mg. in an effort to get off totally.  Don't want to jinx myself by saying it's working, but seems to be.  Not sure that's workable from 10 or 8 mgs.  Maybe ptolemy can comment on that. Hope you find what works for you. 

  • ann26722
    ann26722 connie_49995

    Posted

    Hi Connie I totally sympthasise. I am a chronic brittle asthmatic and have been on steroids for about 6 years. I am withdrawing gradually from a static dose of 40mg per day ( have been higher when in hospital). I am now for the past two weeks been on 10 mg now only going to be due to drop 1mg a month. I can't tell you how awful I feel fatigued doesn't cover it trouble sleeping depressed aching limbs feelings of panic. Absolutely no energy. Is anyone like this. I literally feel I'm going mad. 

    • ptolemy
      ptolemy ann26722

      Posted

      One does sometimes wonder what is worse the disease or the cure. On the other hand steroids have acted as a wonder drug for me, in spite of the side effects. 
    • anapp
      anapp ann26722

      Posted

      Hate to tell you your withdrawal symptoms are normal but if they are really bad or continue to be bad, you may have to go up to the last dose you felt good on or at least up it somewhat.  As always, my advice is to check with Dr. but that has been my experience.  I'm all the way down from 60 to 1 mg. at which I started using the dead slow method.  Am now down to 3 days on, one day off but yesterday had same withdrawal symptoms as you mentioned.   Better today but worried about next drop.  Actually was going to ask ptolemy what they would do if withdrawal symptoms keep up?  Don't want to have to go too far backwards at this stage.  Good luck with your reductions.

    • ann26722
      ann26722 anapp

      Posted

      Thank you so much for your reply it so helps to discuss with other. Well done you though that's a fantastic drop. We will have to keep in touch. 

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.