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Anyone tried ketosteril ?

Posted , 5 users are following.

Toby1965
Toby1965

I have an eGFR of 26 at the moment and am 49 years old, type 1 diabetic. Keep hearing about this drug being effective in the reduction of creatinine levels in the blood but all i can see about it on google searches is online adverts from dodgy pharmacy suppliers in China & india.

0 likes, 5 replies

5 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey Toby1965

    Posted

    Toby, I've never heard of it, but would advise you to keep away from anything you see advertised on the internet.  Far wiser to ask your consultant to refer you to a dietitican with a knowledge of kidney disease for the best advice.  I believe a low protein diet might be recommended amongst other things.  Good luck.
  • Toby1965
    Toby1965

    Posted

    Oh I quite agree, it's just it seems to be recommended by physicians in general in the USA as well as private medical centres and online weirdos advertising cheap drugs. I'm just surprised that no specialists consultants or doctors in this country have even heard of it. My renal consultant is useless , they haven't even heard of alpha lipoic acid and I have been given no dietary advice at ll despite being at stage 4 of the disease. When I ask for help about what tod o he just says make sure you don't msoke ( I don't smoke anyway) and then smiles sympathetically and says "it's inevitable - you're type 1 diabetic , nothing you can do "
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Toby1965

      Posted

      Toby, perhaps there is another renal consultant in your area who might be more helpful.  I actually saw a couple of different ones, and then decided to see a man who is the lead renal consultant privately.  He now sees me on the NHS.  My problem is that I have only one kidney which served me incredibly well for about 50 years and then 10 years ago, I succumbed to a long term inflammatory illness affecting my muscles, arteries and blood vessels which took a year to diagnose.  In that time I had to take Ibuprofen for about 7 months - I stuck to a very low dose just to enable me to get off the bed - I'm a bit anti-pill anyway.  Some months later following routine blood tests for the inflammation, I received a call from my GP informing me that I had chronic kidney disease stage 3.  I am convinced that either the Ibuprofen or the untreated inflammation was the cause, or even the dye used during a scan - apparently one dye is considered ok for the kidneys but another can be harmful.  Now I am in a catch 22 situation because my blood pressure is high and refusing to be controlled by the only blood pressure pill that doesn't cause horrid side effects.  The high BP can be harmful to the kidney, and the kidney problem is probably causing the high BP!  I think I am the renal consultant's worst nightmare.

      Are you receiving any medication, apart from for your diabetes?

  • helen54849
    helen54849 Toby1965

    Posted

    Hi,

    Very strange, this is sold as a course of herbal therephy. You have noted dodgy site from china they will be the same ones that sell tea to make bigger people thin.  Steer well clear there is no magic cure (if there was I wouldn't be on dialysis).  What an odd thing to say "you are diabetic so you will have kidney failure".  My brother is type 1 and no sign of CKD I don't have diabeites and will be having a transplant this year - you are right your neph sounds naf.  You don't have to change your diet unless your bloods suggest you do, its dangerous if you do.  At the moment just avoid salt (and lo salt, thats worse) and processed foods.  Later on you may find that your potassium levels change and at that point you may require a diet change, phosphate is the other but like I said while your bloods show the normal range do nothing to make either of these things too low is as bad as them being high and can be fatal, so leave well alone.  The only issue you may have if and when you get to dialysis is if you do peritoneal dialysis (PD) the bags of solution that go in your peritneum are pure glocose so you will have a period where you will have to keep an even closer eye on your blood sugars as there will be lots of adjustments to be made.  You already deal with one illness you will deal with anything after that.  Good Luck

  • alex02287
    alex02287 Toby1965

    Posted

    Ketosteril is prescribed in Europe's doctors. It is only good for pre dialysis patients. It is made in Germany by Fresenis Kabi. It woks well, bat yo need 3 packs per month.
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