The ‘down’ side of tapering prednisolone

November 19, 2012 § 19 Comments

Curtesy cure4lupus.org

I was started on 50mg a day of the corticosteroid, prednisolone when I was first diagnosed with dermatomyositis in early June of his year. Well of course, I can’t stay on that dose for too long because of side effects such as osteoporosis. So since around  late August I’ve been tapering the dose and factoring in the steroid sparing drug, methotrexate. It has worked pretty well. My disease is in remission because of those drugs.

So here I am, nearly 6 months into taking prednisolone. It has had it’s ups and downs; It has gotten the disease under control, but it has made me look like an advert for moonpig.com with a big round moon face. I’ve put on over 2 stone in weight. It has given me stomach pains. I’ve got osteopenia in my hips. I’ve had heart palpitations and tachycardia because of the steroid. My sleep patterns have been adversely affected. At one point I was also borderline diabetic, but got that under control through dietary changes. My once excellent long vision, is now very blurred.  I have lumps and bumps in the strangest of places. It has also left me prone to infections, which, so far, touch wood, Ive managed to avoid.

On the plus side, I’ve felt pretty happy. Steroids like prednisolone are mood elevators and for the past 6 months, considering I’ve had a pretty awful illness, I’ve been a happy, chirpy girl. Until now that is…

This week I’ve tapered down to 20 mg one day, 0 mg the next. Suddenly my mood isn’t so positive and the dark has set in. I feel lost and angry about my life and how it has turned out. I feel like I’m the worlds biggest underachiever. I’ve got to get out of this funk and think how fantastic it is that I’m now on an average of 10mg of prednisolone a day after being on 50 for so long. I’ve got to keep that positivity and remember how I felt when I thought that this disease might take me, but it hasn’t. It isn’t easy though, when you look in the mirror and you hardly recognise yourself from a year ago. How do those positive people, keep so positive?

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§ 19 Responses to The ‘down’ side of tapering prednisolone

  • I don’t think anyone who can write like you, and make jewellery like you, can ever possibly call themselves an ‘underachiever’!
    Stay brave. I know it’s bloomin’ hard at times.
    All the best.

    • susiemorrow says:

      Thank you so much for your kind words. I know you, yourself have been through tough times, so many people who read this blog have, it humbles me actually. At least we are all in this together, us mad, sicko’s, legit drug takers anonymous. Thanks again Victoria, you made me smile :-)

  • beth says:

    Susie, I,too, am attempting to taper my prednisone dosage. I am at 20 mg as well, but every time I go with a lower dose I flair up. Even with the increased dose of Methotrexate. It’s SO frustrating, but I suppose I’m not in a true remission. I’ve been on the prednisone for 18+ months. Of course, without it, I wouldnt even be able to climb the stairs to my apartment, so I am thankful for it. I’ve gained 20# in 18 months as well, partially due to the meds and partially due to my new inactivity.
    This just BLOWS in every inconceivable bad way….
    b

    • susiemorrow says:

      Sounds exactly like my journey, at least we are all suffering together and know were not alone in this – not sure that helps much, but it does a little. I had a bad day yesterday with the tapering, it was like cold turkey, but so far (fingers and everything else crossed) Im not having a flare, well my face is itching, but that could be anything…These drugs are our best friend and our worst enemy – I wish you luck with the tapering, fingers crossed you get down a dose xx

  • Hi hun, I’ve been there. Prednisolone wreaks havock with your emotions, as well as all the things you mention. When I was tapering I felt close to being suicidal, my mood could not be lifted, I would burst into tears for no reason whatsoever. My negative emotions were just so heightened. It’s really hard to explain to anyone who hasn’t been on steroids. Coupled with the severe sleep deprivation, at one point I went two nights without sleeping and I’m not joking, I actually thought I was going to die of it. I just want to say that what you are feeling is completely normal during a steroid taper, and it will pass, and things will get better. If you need to cry, just go with it. There will be no way you can stop it! And try not to worry to much. Take care and best wishes, and really glad to hear the methotrexate is working for you :) x

    • susiemorrow says:

      OMG 2 nights of not sleeping that would be horrific when you’re feeling ill. My sleep issues are less severe, mainly waking up in the middle of the night and lying there – i try not to have negative thoughts during that time, hard not to though! Funny thing about the crying, Funy you mention crying…I seem to be unable to find tears, I’m a bit worried its a side effect too or something else, ill be mentioning that to my neurologist when i see him in a couple of weeks.

      Thanks for sharing though, it does help to know that others feel the same and have gotten through it and come out the other side. Hate steroids but need them. xxx

  • Maryann Parker says:

    Ahh the dreaded tapering of steroids. I can so relate to your words Susan. I was so moody and hopeless at points I didn’t recognize myself both emotionally and physically. How could something that is helping you so much hurt you so much?? I am still grateful that there is such a horrible drug that pulled me through a difficult time. And your face will go down when you get lower. I am here to tell you 10 and down was the hardest for me but also the most rewarding when I made it through it. I am on the other pred sparing drugs methotrexate and plaquenil…. praying they will continue to do the trick, wishing the same for you and understand the fears behind it all. Sending you lots of love and healing energy!
    xo
    Maruska

    • susiemorrow says:

      Thanks Maruska, for your healing energy, I need some of that xxxx
      Pred… the drug you love to hate, or hate to love. Im totally paranoid about the disease coming back too, now I’m on 10, but i so want to get off them, well at least right down to 5 mg a day maintenance dose would be great.
      Ill send energy back to you, hoping you feel well and fit soon – with love Sus xxxx

  • JillinoisRN says:

    Recovering from anything is a process… having a chronic illness requires a total adjustment in life as you knew it. You have the right to feel bummed now and then- but underachiever you ain’t !! You’re reaching people around the world with your words. Our Congress can’t even do that ! :p

    • susiemorrow says:

      I know you’re right, its hard though, i had a particularly ‘cold turkey’ day yesterday – horrible, just want my old life back, as they say you don’t know what you’ve got until its gone. And thanks for those kind words Jill xxxx

      • JillinoisRN says:

        I get it… I still mourn working as a nurse- I felt a sense of purpose and like it mattered if I showed up. Here, I could be rotting in the back room of my apartment, and nobody would know until I started to stink. Work was my identity- and I miss it. But blogging has made a way to still have human contact :)

        It’s so true- this last many years has made me appreciate things so much more <3

      • susiemorrow says:

        I know, thank god for the internet!

      • JillinoisRN says:

        That’s for sure. I got this laptop from my biological mom and cousin, and it opened up so much for me… before then I had no contact with anybody but my dad (mostly by phone). I’m thankful for him- and he helps when he can (he’s 80). But online friendships with people who have similar situations and/or interests is huge :)

      • susiemorrow says:

        I was very sceptical about online friednships at first, but Ive made friends online that have become very important to me and every bit as close as the friends I made face 2 face. I’ve even managed to meet some of them and its been like meeting old friends you’ve know for years. I believe the stigma of online friendships is dissapating Your friend, Sus xxx

      • JillinoisRN says:

        Yeah, I think so too… people are being smarter about it, and with sites like this, it’s fairly unlikely that people who don’t really want to interact with whoever wrote what they read will find each other. I look forward to hearing from you :) Your friend, Jill <3

      • susiemorrow says:

        Jill, I’m sitting at my work desk, on a wet, but mild, late autumn monring in England, drinking a coffee (decaf of course) and talking with a friend call Jill. Sometimes little things like that, in life, make you feel like all the horrible things like drugs and illness are just a passing phase (albeit a long one) and the act of saying ‘hello’ is as cathartic as it gets. On that note I must also say au revoir as I have to get to work, which thankfully I can do because of the nature of my work and a wonderful, understanding boss. BTW I meant to say, before I sign off, you should write a book…

      • JillinoisRN says:

        It’s very foggy here, at 3:45 a.m., and about 36 degrees (Fahrenheit- not sure what the Celsius conversion is)… and it’s been so nice to ‘chat’ with you :) Have a good day at work. I’m thinking about the book thing. Not sure how to focus it !

  • Thank-you for reminder re. tapering from ‘This-Drug-Won’t-Kill-You-But’. I am hoping next labs show decrease possible and if so will warn those in immediate surroundings that I am about to get more moody than usual. Enjoyed browsing this blog.

    • susiemorrow says:

      So glad you like the blog :-) Its nice to hear nice things like that when you’re going through tapering hell – which I am at the minute. I have to persevere but its awful. I may have to write another moaning post about it to get it off my chest. Saying that, hope your bloods show you can go down a notch, it’s both evil and our best friend this drug.

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