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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

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  • ptolemy
    ptolemy connie_49995

    Posted

    What dosage are you on? How quickly have you been reducing!
    • connie_49995
      connie_49995 ptolemy

      Posted

      I'm on 10mlgs ,went to 5mlgs by doc orders ,could  not even go to work,when back to 10mlgs only on 10mlgs for 2 days not feeling much better ,brain is not working right
    • ptolemy
      ptolemy connie_49995

      Posted

      My gosh if I had dropped from 10mg to 5mg I think I would be in intensive care. That is quite a drop if you have been taking prednisone for a while. If you had just been taking it for a week you might have got away with it. The problem is on higher doses the body stops producing cortisyl because the prednisone does it instead and so the adrenal glands go to sleep if you take it for more than around three weeks. At around 7.5mg the adrenal glands have to wake up from their holiday and that can cause problems so you have to be very careful, as it needs to be taken slowly. Cutting down fast at that point will land anyone on long term steroids up in hospital I would have thought.  
    • connie_49995
      connie_49995 ptolemy

      Posted

      lm back up to 10mg for four days now not feeling a whole lot better if no better by tomorrow I will go to 15  ,if I do anything physical my heart races & I become very short of breath ,can't walk very far ,can't go up stairs , can't lift any thing , still fell has if I have been in a accident ..still swelling in head not quite so bad ,brain fog is getting better but still there .
  • anapp
    anapp connie_49995

    Posted

    I take it 10 mg. was not your highest dosage?  My experience has been when you have bad withdrawal, you have to go back to the last dose on which you felt good.  My understanding is when reducing from 10 mg. it should be reduced no more than 1mg. a month.  But your doctor may have reasons to have dropped you quickly. It's good to hear from others about their experiences on Prednisone, but we can only commiserate and tell you what we've experienced and learned along the way.  You should always check with your doctor. The slowest (and maybe best) way I have ever heard of reducing is:  current mg for 7 days, new mg. for 1 day; current mg. for 6 days, new mg. for 1 day; current mg. for 5 days; new mg. for 1 day etc. until you have reached 0.  Never tried that method but if I can't get off my last mg., I will.  It's slow, but if it work, it's worth it.  So wish you good luck.  
    • connie_49995
      connie_49995 anapp

      Posted

      Tks I will try that when I get back to normal  . Going to stay on 10mgs for four days if no better I will go to 15mg . stay for a week if filling good ,10mgs ,then taper buy 1 a month . If I had stayed on 5mg would I have got better in time ?
  • anapp
    anapp connie_49995

    Posted

    Gee...I don't know about that Connie. Unlikely.  You do usually have to work through some withdrawal symptoms when reducing dosage, but Like Ptolemy said, 10 to 5 is a huge drop and I'm surprised your doctor recommended that, but, again, I would question him both about the drop and going up again.  As far as adrenal glands go, people keep saying your adrenal glands come back at 7.5 but according to my doctor, that's not necessarily so.  I'm at 1 mg. and my doctor is not going to check mine for 10 more weeks...unless of course I'm not doing well.
    • ptolemy
      ptolemy anapp

      Posted

      Hi anapp, 7.5mg is an average figure for the adrenal glands to start working again, it is calculated by the fact that the body needs around 7.5mg of cortosyl to function, if they get more than that for free from the steroids they think what the hell and let the steroids do the work and stop working. Of course the actual amount will vary slightly from person to person. Some people's adrenal glands do not leap into action as they should on reduction of the steroids, some may be sluggish so around 7.5mg you can get very tired as they start to stagger back into action. A lot of doctors suggest a Syncathen test at this point which tests if you adrenal glands are up to working again. Some suggest it at a lower level before people give up the steroids altogether. If your adrenal glands are not up to working properly it means continuing on a very low dose of steroids for life.
    • anapp
      anapp ptolemy

      Posted

      Thank you ptolemy.   I did not know all that...only knew about potentially having to stay on steroids if adrenal glands did not come back and knew they couldn't do the test until you were under 10 mg. However, Dr. apparently does not see the need for that test for me at this time.  Hopefully that means he is hopeful I can get off steroids. Thanks for the excellent explanation.  
    • ptolemy
      ptolemy anapp

      Posted

      anapp, if you are on 1mg and things seem OK you are probably fine anyway.
    • connie_49995
      connie_49995 anapp

      Posted

      I went  up to 10mg.  4 days know not a whole lot better very tired ,can't do anything physical , my heart races & I become very short of breath . If no better tomorrow I will go to 15ml on Saturday , Try that for four days ,if that don't work I will go to 20mls
    • connie_49995
      connie_49995 anapp

      Posted

      This was my lung specialist that dropped me from. 10ml to 5ml & I have never been off predizone in the whole 6 years I have been on them 
    • anapp
      anapp ptolemy

      Posted

      I'n hoping.  Really wanting to lose this weight.  Not sure where you are on meds, but hope you are doing well.
    • anapp
      anapp connie_49995

      Posted

      Have you asked him about it and explained how you are feeling.  Prednisone isn't a good drug to mess around with on your own, although I have changed a mg. or two on occasion but never as much as 5 at a time without doctor's approval and I have a whole different disease.  Is there no other meds you can be on for your condition?  I sympathize with you.  Wish I had more helpful suggestions but I definitely would talk to doctor.  If he doesn't pay attention to you, try another doctor, if you can.  Good luck.  Let me know how you are doing.
    • connie_49995
      connie_49995 anapp

      Posted

      I have a lung specialist ,ENT specialist a kidney specialist & a GP & when I can't breath will they will all put me up to 50Mgs for Two weeks or a month then tapper down, they don't think all my issues are related begg to differ ,the ENT thinks it is , its to do with ever think swelling ,my lungs ,my sinus ,my kidneys ,  my legs, it started with my lungs , giving 15mlgs 4days if know better I will go to 20Mlg . I'm wonder if all my symptoms are to do with side effects of   Taking prednisone.  To high of doses for to long 
    • connie_49995
      connie_49995 anapp

      Posted

      Try to talk to lung specialist ,can't see him until oct ,now on 15mgs felling well, been on 15mgs for 11days . When will I start to taper & how much ?
    • Marina_Marina
      Marina_Marina connie_49995

      Posted

      Dear Connie

      I hope that you are not smoker, and I'm not sure that everybody who is on pred is. If you do not feel bad after 6 years on pred, just cary on and be happy. You probably did not get some of the side effects. I wander how many people on pred are smokers? I'm 66 and did not put on wait but trying to cut down on cigarets. 

      Wishing you all the best.

      Marina

      Since 27. April I am on 20 mg prednisolone, Four weeks ago I was on 15 mg for two weeks, and now I'm on 10 mg for two weeks, and  will be in few days on 5 mg. I have been suffering from horible migrene and they did biopsi on 1. Jun for GCA. As I was already for four weeks on 20 mg my neurologist said it was to late and the biopsy might be negative (and it was). In the mid time I was diagnosed with Blepharitis, as I always had pane in my eyes with agonising head ache. Now my neurologist said that my diagnoses is probably kind of migrene. 

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