Prednisolone and Sarcoidosis

Posted , 7 users are following.

I am a 31 year old male who was diagnosed with sarcoid in November 2013 and immediately prescribed 40mg (8 pills) daily for the first 2 months. At first I was manic, full of energy and couldn't sleep. I ate myself out of house and home and thought I could achieve anything. It was all quite a new experience so it didn't feel too negative. Then I had a couple of psychotic episodes where I would be looking in the mirror and not recognising myself with tears streaming down my face, once having the urge to go to the kitchen and get a knife. Luckily I didn't, and put myself to bed. A few days after these episodes I would go back to feeling on top of the world. So bizarre. Then when I tapered my dose to 20mg a day as my condition had improved I started experiencing symptoms of mild depression. The worst part about it was the uncontrollable crying (so embarrassing) and the overiding sense of sadness and helplessness, knowing full well it was the medication doing it to me. Luckily I read a post online by someone with similar symptoms who said that they simply accepted the way they felt and embraced the depressive symptoms. I tried the same, and it strangely got me through. Again this dose was also balanced out by days of feeling invincible and like there was nothing wrong - total polar opposites and very confusing. Further tapering down to 7.5mg a day, cleared these more severe side-effects, but I am now struggling to control impulsive behaviour. I have cheated on my girlfriend twice, bought totally random, often useless things, and generally struggled to control myself. I had managed to persuade myself at one point that I wanted to break up with my girlfriend of 9 years, whilst having simultaneously bought her an engagement ring. I have now decided to see a therapist which I think I should have done months ago. I have also experienced the worst withdrawal effects when tapering on the lower doses - shivers, aching limbs, headaches, sweats, and mild confusion / panic.. the long and short of it is I've been on this drug for 9 months and it has turned my world upside down in ways that I wouldn't wish upon anybody. I firmly believe however that I wouldn't have been able to cope without a dedicated excercise regime, meditating regularly, and the support of an incredible woman. I will also have a f**king massive party the day I don't have to take these damn pills.

1 like, 6 replies

6 Replies

  • Posted

    Ur experiencing withdrawl symptoms. Ask if a anti depressant can help . 

    Hurray for u with UR exercise and meditation program it really helps. Same here...

    stay strong

  • Posted

    I have just been diagnosed with sarcoidosis and will be starting my  steroid treatment tomorrow.  Like you I will be starting on 40mg but only for three days then I reduce to  30mg for three day and reduce again down to 20mg thats just for now as I have swelling on my optice nerve.  Please tell me how are you doing now? I hope things are a lot better for you.
    • Posted

      I was diagnosed with Sarcoidosis 4 months ago and like you the main area affected was in the orbital cavity of my left eye, causing my eyelid to swell and droop.  They also found sarcoids on my lungs.  I have been on high doses of prednisone (60 mg at the peak) and am now tapering down.  I have had a hard time with the prednisone (moon face, sleeplessness, tremors, etc.) and am thinking I may have to go on methotrexate.  What has been the course of your treatment? Did the problem in your eye stay gone onve you reduced the steroids?
  • Posted

    Hi

    I am Pooja. I am from India. I have been diagnosed with sarcoidosis two months back and since then only I came to know about this disease, no one amongst my friends and relatives has ever heard of this disease. The medication is on..But am so much frustrated and depressed because of the side effects these medicines. It's been one week that i have stopped taking them. And now again i have severe chest pain, lower back pain, my wrist is now swollen..I feel so much depressed n restless..I feel like crying, i have become so negative that i cant stand this situation. I think my health is degrading day by day..But I don't want to go back to those medicine. I have swollen round face now, i have put on 3 kg weight in 2 weeks. I don't see anything positive now..I feel like ending my life..I don't know why i am writing all this here..I don't know... But today when i read so much here on this page n came across many people suffering from the same disease and facing same issues like me and still fighting n finding solutions, i got a little strength..Thanks to all who posted so much about their situation...

    • Posted

      Hi Pooja

      I have had sarcoid for over thirty years. Strong steriods at 60mgs daily for over two years. Yes I had all the bad side effects that you have suffered. Took many years to come off steriods.

      Still have some side effects from sarcoid but on the whole I am much inproved.

      Hang in there...I have had a full and meaningful life and I trust you will too. Do not give up on the battle.

      Fight the good fight.

      Regards Tangles

  • Posted

    Hi,

    II have read your story and understand it all because I have had many similar episodes to yours, and have gone through all the things you are going through, but I advise you don't do anything impulsely - think it well over first.

    I have been on steroids (prednisolone) for 37 years for sarcoid and have never been off them for one single day in all this time.  At the beginning I was on 80 mg per day for nearly a year.  Over the years the dosage has been reduced now i'm on 15mg per day, which is keeping the disease at bay.

    Get through one day at a time, and hope tomorrow will be better for you.

     

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