Getting off prednisone

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I was diagnosed with MPGN in 5/14.  I had two infusions of Rituxan and then on prednisone for 20 months.  I tapered off 15 mg for a year.  My last dose was 9/17/16 and it is now the end of January 2017.  Getting off prednisone has been the most difficult thing I have ever done.  Severe pain in joints and muscles.  I'm somewhat better but I also have a long way to go.  I do think walking once I get up and start moving is helpful.  I'm 79 years old and never had arthritis prior to my CKD.  No NSAIDs for me so very little helps the pain.  I'm beginning to think this will take a year to feel normal again.  Anyone else had this problem.

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  • Posted

    Hi Holley,

    I am on this at the moment, I started on 20mg on 22/12/16, On 13/1/17 they dropped the dose to 15mg and today they have just dropped it to 10mg.  I have been fine on them apart from nausea, headaches etc.  As they are dropping them I am getting terrible spots (which don't bother me except they hurt) and the aching joints you describe.  I had 3 days of really high dose steroids for a rejection episode (I have had a kidney transplant) that the hospital caused as they poisoned me with my anti rejection meds by giving me too much and this causes rejection.  Any way I was terrible on these, severe head ache, couldn't eat, severe nausea and by the third day when my husband came to pick me up to take me home I was off my face.  The days that followed I would say 7 at least I had aches that moved like the meds were leaving my body so it would start in the legs, then my arms, then my body, then my back then my head and neck until I was fine.  So steroids have this affect as the longer you are on them the more they affect your adrinal gland and it stops producing cortizone (so I believe) so it will take a bit of time for it to get back to normal but you will.  Now I am down to 10mg (aprrently it is important to do this next bit very slowly) I will be monitored at this for a few weeks then the next stage discussed and a plan made.  I do hope you start to feel better soon as I know how horrid it is.  Please keep us posted with your progress as I think your experience will certainly help me as I come off them.

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  • Posted

    holley, Helen is right in her thinking that steroids such as Prednisone/Prednisolone, especially in high doses, do suppress the adrenal glands (they sit just above each kidney).  Normally, when well our bodies produce a natural supply of steroids (cortisol) but this production can be affected by long term steroids.

    Having been on Prednisolone, starting at 40mg daily for some 5 1/2 years for an inflammatory autoimmune condition affecting the muscles and blood vessels, I know only too well how very difficult it is to reduce the dose and get off them.  It is known that long term steroids can cause muscle weakness and reducing them can give withdrawal effects.With my condition, it was a very complicated procedure knowing what was steroid withdrawal pain and what was my disease flaring.

    Although it is fine to reduce down through the doses fairly quickly when on steroids for a short time, say 6 weeks or so, for things like asthma, when on them for long term, the secret is to reduce in very small decrements and if that doesn't work, it can be more successful if one dose is slowly tapered to the next dose over a number of days.

    Anyway, it sounds as though you have done well to get off the drugs already, and it may help you to know that after being on them for a considerable length of time it can take the body up to a year to return to normal - there are all sorts of hormones disrupted and trying to return to normal.

    Meanwhile, There are a couple of things that might help you.  Firstly, if you haven't had a Vit D blood test, then do ask for one as any severe deficiency can lead to pain.  Secondly, a good physio can give you certain exercises that will help to strengthen your muscles again after the onslaught of steroids.

    Hope this helps, and I hope you will soon feel better.

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  • Posted

    My husband and as diagnosed with MGNS and had done the chemo and predisone treatment. He's made sure to stay away from sweets and eats a Mediterranean diet. He also walks 6 days a week and is doing better. They said if this treatment didn't work they would do Rituxin. That's supposed to be best treatment but insurance wouldn't approve. I hope you're yer doing well and keep up the good fight. God bless

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  • Posted

    Hi, I am finally off them yeh. I get achy joints, its not too bad as I wasn't on them for too long thankfully.  If I have sat down for a bit and get up my knees kill me I walk like a duck.  My nurse said to me what are you walking like that for and laughed, in a nice way.  I said you take em then we can laugh at your duck walk. I am hoping it goes soon.  I tell you what I have found, after transplant my hair started to fall out and I don't mean a little bit, I am glad I had a lot of hair as half of it has gone, it was on my setee, in my car all over everyone that came to the house.  The steroids topped this and now I am off them the hair falling off has started again.  I am hoping that calms down before I have none left.  I hope you feel better soon.

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