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I have been taking 60m of prednisolone a day for 7 weeks and no better.

Posted , 3 users are following.

jennifer78269
jennifer78269

I am a 68 year old women who was diagnosed with nephrotic syndrome 2 months ago after being ill for about 3 months. I have multiple myeloma being the cause. The prednisolone does not appear to be working and I am still losing lots of protein. Has anyone else had this problem? Feeling very depressed and just want to feel better. How do other people live with this?

1 like, 4 replies

4 Replies

  • susan42245
    susan42245 jennifer78269

    Posted

    I am 54 and was put on the same meds for 6 months they did make me feel really ill and I was taken off them due to this been off for about 3 months I am now in remission protein drop from 1000 to low 200 which is a improvement I still do not know what caused it they are still looking into this had every test possible
  • Amandaten
    Amandaten jennifer78269

    Posted

    Hi Jennifer,

    You are not alone out there and I feel for you. I have had NS for the last three years and tried numerous treatments. The only one that has managed to get me into remission was Cyclophosphamide which is a Chemotherapy treament that is only for 8 weeks. Before this treament I had numerous relapses and was constantly tired. I feel completely normal now as if I never had NS. I am still on 5mg of prednisolone but gradually reducing. I never lost my hair either. Not everyone is suitable for this treatment but it worked for me. I know there is no known cure and I still take one day at a time. So stay positive as you will get through this. xx

    So keep positive 

    • jennifer78269
      jennifer78269 Amandaten

      Posted

      Thanks Amanda, I have just come out of hospital again. I have now been on 60mg of prednisolone for 3 mths and they have done nothing to reduce the protein loss. I am seeing the consultant on Monday to discuss another treatment, your response will help me with this. Still have very swollen feet, ankles and legs and feel awful most of the time. However, you have given me hope that I will see the end of this. Thanks Jenny
    • Amandaten
      Amandaten jennifer78269

      Posted

      Hi Jenny,

      I had to really look into NS online mostly to basically find my own treatment and push every 3 months to try something else. Like you nothing worked for me.

      The problem is I have discoverd is the treatments are vry expensive especially the Cyclophamaide which is why it took so long for them to offer it to me. But it worked! So good luck on Monday. I live in Wiltshire so if you ever want to meet up I would be happy to as NS is very uncommon and it is nice to be around others that have it. I am feeling so well that I am going to learn to Tap Dance. I have been so poorly that even getting dressed meant I had to go back to sleep for half hour.

      Also did the docs advise an Alkaline Diet. as that helped me so  much and kept the swelling down alot.

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