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prednisone withdrawal

Posted , 6 users are following.

dorothy_94694
dorothy_94694

Hi, I am a new member and I am gradually reducing my dose of prednisone.  I reduce by 1mg every 2 weeks I have gone from 60 mg to 20.  Does prednisone withdrawal cause weight gain?  or neck pain?  I would like to know what others have experienced

0 likes, 13 replies

13 Replies

  • ptolemy
    ptolemy dorothy_94694

    Posted

    Pred causes weight gain as one of its side effects. Some people are lucky and it does not affect them. It is a good idea to watch your diet when on steroids. Steroids have over eighty side effects.
    • dorothy_94694
      dorothy_94694 ptolemy

      Posted

      Thanks for your response.  I have experienced many negative effects, mostly fractures due to osteoporosis and skin problems.  I will be glad to get off it.  Sorry for the delay in responding...I had a difficult week.
  • wendy62425
    wendy62425 dorothy_94694

    Posted

    Hello Dorothy

    First of all you are reducing the Prednisone the correct way.  You are the first one that has gone down that slowly (except for me) 1mg at a time for a week or two before going down another 1 mg.  I suffered from Chronic Urticaria ( hives) and my doctor had me go down that slowly as well.  I have not had side effects with the Prednisone, no weight gain, etc.  sometimes I have like fluId under my eyes like bags but then they go away.  May I ask what you were taking Prednisone for?

    have a good day

    wendy

    • dorothy_94694
      dorothy_94694 wendy62425

      Posted

      Hi Wendy,

      I'm on prednisone for Graft versus Host Disease...it is a complication from having had a bone marrow transplant for blood cancer.  Until now there has been no other treatment but I am now on Rituxin which is why my doctor is reducting the steroid.

  • zss
    zss dorothy_94694

    Posted

    Hello Dorothy,

    Withdrawal of prednisolone should cause a reduction of weight as the excess fluid that builds up because of it, drains out through normal bodyily function.

    The "moon face" effect also goes away.

    My other withdrawal symtoms included nausea, exteme tiredness, disrupted sleep and lethargy.

    If you suffer from arthritis, be prepared for excruciating levels of pain in your joints. As the prednisolone ebbs away, so the anti-inflamatory effect also reduces. All parts of your body that you were feeling some respite from chronic pain, will now no longer have the protection they once had.

    I have chronic and worsening osteo arthritis, and one of the "side effects" of prednisolone was to feel relief of joint pain. Now I am exposed to the full pain levels that are worse that what I experienced prior to taking my two courses of prednisolone. My breast bone has arthritis in the joints, breathing is painful, with every breath.

    As I already have a damaged immune system, prednisolone also reduces what little I had. Consequently, I also suffered from foliculitis that has taken months to recover from, it is slowly going away.

    My chronic asthma has also returned worse that what it was.

    The auto-immune disease I have is sarcoidosis, it attacks my lungs. The prednisolone has stopped it spreading.

    Whilst prednisolone has ugly side effects both going on it and withdrawing from it, prednisolone is one of the most important drugs when everything else fails. It save lives.

    Take care Dorothy.

    You will somehow find a way through this difficult time.

    • dorothy_94694
      dorothy_94694 zss

      Posted

      Thank you for respondingf ZSS. You certainly are having a difficult time.  It is frustrating that the drug that keeps us alive causes so many other problems.
    • wendy62425
      wendy62425 dorothy_94694

      Posted

      Yes indeed!  I know Prednisone is not the best for any of us.....but sure has helped so many of us to have quality of life.  It has been a blessing for me.  I will stay on my 3 mg for a while especially while going off Cyclosporine.  I pray the hives will never come back and that my immune system will heal!

      have a good day!

      Wendy

    • zss
      zss dorothy_94694

      Posted

      Hello Dorothy, I hope you are feeling well.

      Yes, Prednisolone has been around since the early 1950's, and has probably changed very little since that time. It's old, crude by modern standards, but, very effective at what it does in controlling inflamation.

      Unfortunately, there is really no other drug that can totally replace it. Either the other drugs are not as effective and they all have their own unpleasant side effects, depending on the person.

      As one of my thoracic specialists said:

      "If I could come up with Prednisolone that doesn't have any side effects, I wouldn't be sitting here talking to you. I will be living up in the tropics on my own island with my boat and my plane."

    • zss
      zss dorothy_94694

      Posted

      One other thing to keep in mind Dorothy and Wendy, as you get down to the lower levels of prednisolone when tapering off there is no let up in the side effects.

      In some cases, the side effects can actually get worse.

      The reason is, the amount of change in the level of prednisolone as a percentage of the dose you are coming down from.

      eg. If you are coming off 50mg, down to 37.5mg, that is a 25% drop in level.

      Drop from 37.5mg down to 25mg, and the effective drop is 33%, a much bigger change percentage.

      As you can see, a drop of 33% is going to make more of an upset to your body.

      This continues right down to the very low levels too.

      Finally, the more you take prednisolone, you do not get used to it like an opiate for example morphine or codeine.

      Prednisolone works the opposite way, at least for me. The more you take it, the more sensitive you are to the unwanted side effects.

      This,  without any benefit of taking less to do the same anti-inflamatory job.

      In other words, you still have to take the same amount as before, but you suffer more from the side effects.

      I have to take Prednefrin, this is the eye drop form of Prednisolone. It contains tiny amounts of Prednisolone compared to the tablets.

      But, I still suffer the nausea as the eye drops make their way from the eyes, draining through the sinuses and down your throat into my stomach.

      I brought up this phenomena as it felt worse in 2015 than 2014. She knew what I was on about and confirmed what I had experienced.

      I have not made any of this up. I have merely put into words what I have experienced in 2014 and 2015.

      I don't want to report doom and gloom, but I have given you an honest account so you don't have any nasty surprises.

      Take care.

    • dorothy_94694
      dorothy_94694 zss

      Posted

      Thanks for your input, zss.  I thought for a while that some of the side effects were decreasing, eg my skin was better for a week or so but now it is back to bruising and falling off :-(.  My balance is better though and I am not falling as much and I am sleeping better...but there is so much wrong with me and I am on a lot of other meds so it is hard sometimes to assign cause and effect.  However, it is what it is, and we much just get on with it.
    • zss
      zss dorothy_94694

      Posted

      "I brought up this phenomena as it felt worse in 2015 than 2014. She knew what I was on about and confirmed what I had experienced."

      Hello Dorothy, my above statement didn't make sense. The "She" is my own General Practitioner, the family doctor.

      I'm very lucky to have her as my doctor. I trust her completely.

    • dorothy_94694
      dorothy_94694 zss

      Posted

      Yes that is lucky.  I have a   great GP also but she does not know  much

      about my condition (GVHD) ...most doctors don't.  Mainly  I rely on the doctors at the Bone Marrow program in Vancouver.

    • ali15074
      ali15074 zss

      Posted

      Hey, I'm currently experiencing prednisone withdrawals.

      I took it for 2 months. Quit cold turkey. It's been 3 months since my last dose, and I'm still nowhere near recovery.

      My question to you is, how much time did it take for you to fully recover?

      And what where ALL the symptoms you experienced during withdrawal?

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