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Berger's Disease down to 30% kidney function after 15 years

Posted , 2 users are following.

Guest
Guest

Only diagnosed after medical once moving to a new area. BP was way up but now under control with Lisinopril and Irbesartan. Downside so far is really chronic fatigue. This is common on USA/Canada forums but completely unrecognised over here in the UK which is silly.

They dont seem that bothered about trying to find out why we get this disease either. Now 50 and not looking forward to the future of renal failure and what it meand dialysis etc, especially given everything is so much effort these days. I need to sleep loads.

Always been fit and healthy, super active all my life. I suspect Ibuprofen damaged my kidney.

0 likes, 4 replies

4 Replies

  • Guest
    Guest

    Posted

    PS: I have been vegetarian for 4 years...always ate lots of fruit n veg. Water and plenty of *normal* exercise.

    Tried the fish oil thing and various others none of which made any difference to progression.

  • Guest
    Guest

    Posted

    i have just turned 40 and my gfr was 66 and was told to not worry... but you do don't you! have you been told your kidney function is due to your medication or have you been having tests to diagnose why this is happening. I will shortly find out what the Drs have in mind for me but i bet its something to do with Ramipril, I wish you all the luck and stay positive because it certainly helps me on my low days which are becoming more frequent unfortunately. Talking like this really helps me as i don't feel quite so alone. Thanks
    • emma65376
      emma65376 Guest

      Posted

      Hi,

      I'm 20 years old and been told I have Bergers disease. I am in the same process as you (finding out soon what my treatment is and why it's happened). I just had a kidney biopsy 3 days ago. It's hard to get through the days when your completely stuck and don't understand why you have the disease and what your fate is, isn't it?

      I was just wondering, do you suffer terrible pains down your legs? I get them all the time but they say I can't take any anti-inflamatory tablets such as ibruphen,is that the same with you?

      Maybe all of us that suffer this disease can support each other.

      Best of luck

  • Guest
    Guest

    Posted

    I had no idea the Ace Inhibitors (Lisinopril) had a detrimental effect on kidneys until your post Lisa. I checked wickipedia online for *Ace Inhibitor* side effects.

    and am truly shocked!!! I guess controlling the BP is more important immediately than the ongoing kidney function, but still it seems weird. I shall now need to check in to the more up to date alternatives.

    You live and learn each day. The more I learn about doctors and consultants the less the majority appear to care! My last consultant said I had 30% kidney function left and would need dyalisis etc within a year of so. Latest consultant said it's fine at 45% and dropping around 4% per year...phew...

    I guess the moral of the story is not to have blind faith in anyone, least of all your doctors!

    Pete

    ****

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