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I was diagnosed with nyphrotic syndrome last October and have been treated with 60 ml of steriods a day which have not worked. Recently spent 2 weeks in hospital where I was started on tacrolymos which I can't understand as it's for people who have had a transplant. The side effects are dreadful and I spend my life in bed. Has anyone else been prescribed this for nyphrotic syndrome?

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7 Replies

  • Posted

    Oh yes - Tacrolimus, also known as Advagraf is being prescribed for nephrotic syndrome. I'm taking it myself - I'm suffering from side effects for nearly 3 years now. Depending on the dose, you will hear noises and sounds in the beggining, then you will be tired like never before, being sick in the morning - I've had a period of time when I was sick for half a year at least twice a week in the morning and I'm male.

    Tacrolimus is prescribed for transplatations, because it targets the immune system, in a way disabling it, which means that the body is not fighting the foreign organ. It's the same principle in nephrotic syndrome - an attempt to stop your immune system from damaging the kidneys any more that they already are.

    I think you should follow through with the treatment and closely monitor the side effects with GP/consultant.

    Good luck, I'm hopeful the treatment will work for you!

  • Posted

    Hi darling,

    I too have had NS for the last three years. When I was first diagnosed I was on 60mg of steroids that did not work. I have tried numerous drugs alongside the steroids. I have had 4 relapses until they tried cyphosphamaide, which is a chemo therapy. I have been in remission now for 5 months and am only on 5 mg of steroids. I am 50 years old. I feel normal again but I also follow an alkaline diet which has helped me a lot. I did not gain any weight because of that wonderful diet so still continue with this . So how old are you? I do feel for you as the tiredness is awful.

  • Posted

    I'm so sorry to hear this Jennifer. I was taken ill in July last year. I'm still taking 10mg of steriods but will reduce to one next week. Please try to keep positive because I'm certain that helps our health. I've not been prescribed tacrolymos but it's understandable. I just hope that your system will in time get used to the drug and your awful side effect symptoms will calm down so to speak. I'm not a medic but do feel that a healthy life style is our best way forward. 

    Most certainally, please keep this site posted on your progress.

                                                      Regards, Eric  

  • Posted

    Thanks to all of you who have replied. I have just come out of hospital again after a 3 wèek stay. I had a hypo at home, admitted to hospital and discovered that I had developed diabetes caused by a high dose of steroids. Now on insulin and further damage to the kidneys. This should be a lesson to us all.
    • Posted

      You poor baby xx do you feel better on insulin? Were there any warnings? I check every day on the Irvine stick and sometimes I have sugar but seem to control it by having no sugar at all in my diet. What level of steroids are you on now?
    • Posted

      The only warning was glucose in my urine a couple of weeks before the hypo, but the hospital didn't spot it. My husband found me on the sitting room floor in the middle of the night. My sugar level was so high it was unreadable when I was admitted to hospital. I have been taking 50m of steriods a day for the past 6 months, but this has gradually reduced to 25m. I have no sugar in my diet but my sugar levels are up and down and often below 4. Still feeling pretty rotten and have developed a chest infection.

      Thanks for your response it's nice to know I am not on my own.

    • Posted

      How old are you darling? Yes it is horrid and somehow we just carry on. My Husband bless him suffers with worry more I think x does your Husband get to chat to anyone about you and his feelings?

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