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Working with nephrotic syndrome

Posted , 7 users are following.

amy31719
amy31719

Hi everyone,

I have been diagnosed with nephrotic syndrome last week (29 years old) and I'm due to return back to work in 2 weeks following maternity leave. I'm not up to going back any day soon now, iv just started prednisolone, I get tired very easily and quite grumpy.

I was hoping to take a few months off work just to get settled with the steroids etc.and hopefully until I'm in remission.

Did you take anytime from work following your diagnosis, was your boss understanding and if so how long did you take off?

Thanks

Amy

2 likes, 12 replies

12 Replies

  • Amandaten
    Amandaten amy31719

    Posted

    Hi Amy,

    I had NS for 4 years and have been in remission for over a year now. Congratulations on your baby.

    I am 52 now but my work have been amazing.

    Good luck with treatment x

    Amanda x

    • amy31719
      amy31719 Amandaten

      Posted

      Thanks Amanda,

      How long did you take off wheb you were first diagnosed?

      X

    • Amandaten
      Amandaten amy31719

      Posted

      Hi Amy,

      Well it all happened so fast! Within a month my whole body was swollen and I collapsed at work, went to the doctors after and was rushed to hospital. I stayed there for 3 weeks, had kidney biopsy and so many tests and scans. Then was treated with a very hight dose of steroids. I couldn't even walk far without needing to sleep. I had a year off work because steroid treatment didn't work for me so eventually I had cyclosporin and steroids. Then felt a bit better so went back to work for a few hours a week. I had three relapses and lots of different drugs. Finally they gave me chemo for eight weeks and that reset my body and I have now been in complete remission for a year and a half now x x what is your story and which drugs are you on?

      Amanda x

    • amy31719
      amy31719 Amandaten

      Posted

      Hi Amanda,

      Kind of the same start as you really. It's all been a whirlwind. I noticed my ankles were abit puffy 3 weeks ago then by the afternoon I couldn't bend my legs with the swelling, went to a&e that evening and rushed to a nephrologist the next day who diagnosed me with ns. Had biopsy the following day, which showed mcd. So all in the space of 4 days really and I'm not on prednisolone 40mg as I'm breastfeeding my daughter so they reduced the dose from 60. So tired all the time though and also have a 2 yo boy to play football with constantly :-( I was hoping to take a few months off but was unsure what the average time ppl take off with this and how they have felt xx

    • Amandaten
      Amandaten amy31719

      Posted

      Hi,

      You are a lot younger than me so it all depends on how you feel. What do you do?

  • daniel52343
    daniel52343 amy31719

    Posted

    Hi Amy

    I've just read your post and can relate a lot to it- I have NS and am 14 months into it with no end in sight- I'm just about capable of work but as I'm on chemo now I've got the added problem of colds and flus becoming common. This illness is literally ruining my life as I'm unable to do anything without repercussions and I feel I'm losing the mental battle as it goes on. What are your day to day symptoms bar tiredness? I get a really horrible feeling in my head which I dread and I'm not sure what causes it, either does the doctor! I keep being told to be patient as I'll be cured but the relapse rates are high and I'm just so depressed- I too have just had a baby girl and her and my son and my wife keep me going because the illness has taken everything else away. Life is so hard and no one seems to understand. I hope you're nearly there though - Dan

    • steven75363
      steven75363 daniel52343

      Posted

      Daniel,

      I have to say I do understand your situation.  I was diagnosed with MGN in May of 2015 and have had the symptoms of NS for longer than that.  In February of this year I started a milder treatment program than the chemo you are on.  It is a drug called tacrolimus.  This is an immunosuppresive and when I get around people who are sick I get fearful.  I have been sick a couple of times in the last 8 months and have a difficult time getting rid of it when I am.  

      While some progress has been made in the treatment my doctor told me at my last visit that he wants to extend to 24 months now to get an extra 5% on the 1 year remission rate.  Been pretty difficult to stomach as the drugs cause some nasty side effects and I don't look forward to another 16 months of that.

      My motto for this is based on something I have heard in AA for the past 29 years.  "One day at a time".  Keep hanging in there.

      Steven

    • TaronSr27
      TaronSr27 daniel52343

      Posted

      Dan the man I hope this message find you well and doing better...we suffer from the same thing I’ve had NS since I was 13 I’m 28 now I’m on Tacro also but since my son has been in my life the last 4 years been rough hospital stays my most recent one was from July 30 - Aug 15th I’ve struggled mentally being that I fear I won’t be able to accomplish anything due to NS I suffer from depression and anxiety just try to find things that make you happy try not to focus on the downs of life we still here living our kid(s) need us to have a clear mind I’m praying for you 
  • steven75363
    steven75363 amy31719

    Posted

    Amy,

    Hope this finds you doing well and back to work.  Just started looking for some folks that may be going through similar circumstances.  

    I was diagnosed with MGN and was in a NS condition last May.  After waiting for about 9 months it was decided to go with a different treatment plan rather than watch and wait.  I was put on a treatment that started with 50 mg prednisone and 3mg tacrolimus twice daily.  We dropped the predisone 10 mg every two weeks then tapered off over the next month.  I currently use lisinopril 10 mg twice daily and the lisinopril 7 mg split over twice daily.

    I actually have missed only a couple of days of work since starting the treatment, but would have like the time off to get through the first 6 weeks of the steriod portion of the therapy.  

    Hopefully by now you are close to completion with the high doses of steriods and are feeling better. 

    Stay strong for those you love.

  • shivak
    shivak amy31719

    Posted

    Hello amy i have nephrotic syndrome.i just want to talk to you.i am very tensed about my condition.i get know about it just a month ago.so i want to know that what condition you go through and how are you dignosed?

    Please contact me on whats app +918607501810

    Please i really need your help

    • Amandaten
      Amandaten shivak

      Posted

      Hi Shivak,

      I had NS for 5 years but am now fully recovered,

      I had lots of steroids and other medication but nothing worked.

      I had 8 week treatment of chemo and that did the trick

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