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32 year old NS patient on Prednisolone

Posted , 5 users are following.

lewisanderson42
lewisanderson42

Hi,

i'm 32 now and have had NS since i was born. Up until 2003 i was only having one relapse every 2 years. Now i'm relapsing every 2 months.

i'm currently taking high doses of prednisolone to control the relapse, however i've been unable to wean myself off them totally for over a year and the cumulative dose is taking it's toll.

i've recently tested myself for food intollerances and allergies, in an attempt to eliminate things from my body that could be stressing my immune system. No obvious intollerances or allergies. I'm waiting to do a series of immunology tests to see if i'm carrying any viruses, parasites, infections, etc, which could also be stressing my immune system.

As far as i'm concerned, something is causing my immune system to over react and my kidneys are bearing the brunt by losing protein and being damaged by large cholesterol molecules passing through the nephrons. The prednisolone works to supress my immune system, so where else should i look for triggers?

i've never had a biopsy - expecting to have one done within the next 6 months.

i've taken cyclophosfomide and cyclosporin in the past.

my doctor wants to start me on mycophenolate moftyl - other doctors don't like the stuff and say i ought to be on tacrolimus.

i've not posted on sites like this before, however i'll keep an eye on the post and answer any questions i can about my 32 years history, diets, treatments, side effects of prednisolone, work, etc, as best as i can.

best wishes to you all,

Lewis

0 likes, 7 replies

7 Replies

  • Amandaten
    Amandaten lewisanderson42

    Posted

    Hi Lewis,

    Bless you for writing. I have has NS for only three years and have tried various meds.

    No results from Cyclosporin,Mycophemolate, Levamisole. The only thing that has worked for me is Cyphosphamaide but it does not work for others.

    The best thing I did was go on the Alkaline diet, it is amazing but took me 12 weeks to get used to it. I kept my fluid and swelling down as much as possible whrn in relapses. The diet is so high in all the nutrients our body need and low in protien as one gets all the protein from plants, so easier to digets.

    It is good to join a group like this as we are not alone and everyone has a different story.

    How are you doing now?

    Amanda x

  • esther_1983
    esther_1983 lewisanderson42

    Posted

    Hi Lewis,

    I am turning 32 in two months and i have c3 glomerulonephritis 3 years ago. My situation is getting worse three months ago. i have been receiving plasma treatment twice a week. My Kidney dr said my protein level has gone up since the treatment and i am currently on Myfortic and Predisone to lower my immune system. 

    I am living in Ontario, Canada. I am hoping to look for someone who have the same disease as me. i need extra support. 

    I have a 3 years old son and my husband is currently the main support for the family. I am on a sick leave right now

  • Johntot
    Johntot lewisanderson42

    Posted

    I was diagnosed in February 2013. Prednisolone didn't work and damaged my physique (fat,stretch marks etc). As I first leanred that they weren't working for me I immediately went on a very strict diet I created, combined with exercise, which began to reduce the about of protein in my urine and increased the albumin level in my blood, basically getting rid of NS(I'll expand on this below). As my Doctor saw an improvement he started reducing the prednisolone from 60mg to 0mg and put me on an immune-suppressant med - Cyclosporine. And since, had 0 side affects from.

    The diet I created was basically cutting out all processed food. Cutting out high salt, high fat content, high carbohydrate content and overall light and frequent meals. I drunk only water and lots of vegetables and fruits I juiced for a year straight until I started introducing drinks like coke etc: at least 3 liters of water a day. I still keep this up as it improves everything and I go to the gym almost everyday weight training etc.

    So at this point I only have trace amounts of protein in my urine and my blood tests look the same as a normal healthy persons. My Doctor is working on the plan to stop all meds but at this point I'm not bothered as I can pretty much do anything I want with no repercussions on my health.

    If you want more info just ask smile

    • Amandaten
      Amandaten Johntot

      Posted

      Wow ! Well done, I too did the alkaline diet and this has given me the ability to keep weight off. I have reduced from 60mg to 2.5 mg and next week I will reduce to 1mg x so well done us because it is a horrible syndrome to have x
  • archana21995
    archana21995 lewisanderson42

    Posted

    Hi Lewis,  I am suffering form NS since 2011 its lapses every year . steroids helps me to reduce swelling but it has side effects. . Any other alternate treatment available ? 
  • lewisanderson42
    lewisanderson42

    Posted

    Hello everyone

    Just to say that i have been on Mycophenolate Mofetil for about 3 years.  I take 5mg of prednisolone daily as well.  Fortunately i have been relapse free since then, and have not experienced any side effects from the drugs.  Generally i feel great!  My diet is good without being unusual, and so life feels a bit normal at last.  My doctor wants to start reducing my mycophenolate dose however, i am not keen to do so in case i replase again.

    Hope everyone's feeling well.

    Lewis

  • esther_1983
    esther_1983 lewisanderson42

    Posted

    hi Lewis, we are on the same medication! Glad to hear you are feeling great. I am hoping my next health assessment shows more improvement so I don't need to do plasma treatment anymore.  Stay strong tgt, girls!
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