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Anyone else have kidney nephritisFSGS,stage3+ ?

Posted , 3 users are following.

sarahjane1
sarahjane1

Hi there, 

i have chronic long term nephritis, currently being treated with cyclosporine, plus steroids. I feel grotty most of time. If this doesn't work, next treatment is Rituximab  -  does anyone have any info about this, experience of it?

the side affects sound grim...but might bemy last option before dialysis.

appreciate any feedback,thank you for.

 

0 likes, 4 replies

4 Replies

  • eric31962
    eric31962 sarahjane1

    Posted

    Hi there Sarahjane, sorry to hear of your diagosis .

    I had dialysis for 5, weeks last year. Just look upon it as giving your system a total rest. A couple of weeks holiday! I'd love to tell you how brave I was, but in reality I sobbed my heart out.

    If the worst case scenario should happen, try to forward plan (Scenario analysis)

    Can you do this at home? It's not as bad as it might be if one takes out the stress of travel. 

    Thinking of you.         Eric

    • sarahjane1
      sarahjane1 eric31962

      Posted

      thank you Eric, bless you, I hope that it made you feel better...can I ask you, do you have to continually have dialysis, or is it now and then when your kidneys are tired, so to speak? Hope you don't mind me asking...

       

    • eric31962
      eric31962 sarahjane1

      Posted

      So far as I know I'd never had any kidney problems (or any problems!) in my life. My legs just swelled -up . Went to G.P. who prescribed (100 Ibuprofen 400mg 3 x a day) not good for kidneys! Kept going to hospital for tests. Hospital admitted me, gave me Warfarin, I got worse . Some doctors from Swansea kidney unit were on a visit to the hospital and recognised the symptoms as Nephrotic kidney disease. I'd been in the cottage hospital over a month. I was really ill by this time. I had two weeks of dialysis as an inpatient and three weeks as an outpatient. By which time the steriods kicked -in and I no longer needed the treatment.

      I was lucky, but no, this is the only experience I've ever had thank God !

                                          

                              Good luck , Eric

       

  • helen54849
    helen54849 sarahjane1

    Posted

    Hi,

    With your condition its more than likely once you start dialysis you will continue with it, Eric said he had never had any kidney issues so he would of by the sounds of it had acute renal failure which you can recover from in certain circumstances,  You say you have long term kidney issues so it is unlikley a bout of dialysis will cure you, you have to be realistic and know what you are dealing with.  What is your kidney function at the moment (your GFR) you don't usually have dialysis until you have below 10% kidney function, you can function with 5% or less. Some people get to stage 3 CKD and dont get any worse at all, some take a long time. I have end stage renal failure and dialysis really isn't that bad, I do it myself at home each night so I can still go to work in the day time and once you have the catheter fitted your good to go.  I feel so much better for it but I didn't really have any symptoms until the end any way.  Hope this helps a bit x

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