Wednesday, March 28, 2012

Don't Always Believe what you Read on the Internet

To get a better idea about this post, may I suggest you read a post I wrote called "Damn Mesna".  To cut a long story short, during the chemotherapy they wanted to give me a drug called Mesna.  I found an article that said Mesna increases cystine output in the urine, cystine being the key culprit of my kidney disorder.  I had already taken the drug once during the mobilisation process and they wanted me to take it again during the chemo prior to the transplant.

This had worried me a bit so I decided to do a little more investigation.  My first step was to talk to the doctors here in Chicago about it and they came up with the idea of having a catheter and regular bladder washes during the chemo.  I still had that niggling feeling in the back of my mind and as I had already taken the drug once I wanted to check that there were no long term problems so I investigated further.

My next stop was to contact a New York based nephrologist by the name of Dr David Goldfarb.  I'll digress for a minute just to say that Dr Goldfarb is one of the most inspirational doctors I know and one of the leading authorities on cystinuria in the world.  He has never formally treated me so the fact that he will give me an aster to my question is greatly appreciated.  And he doesn't just do it for me he will do it for anyone who suffers from cystinuria.

So I put my concerns to him in writing and it turns out that Mesna has actually been used in a very few cases to treat cystinuria.  Yes there is evidence out there to suggest that mesna can actually decrease cystine levels in the urine.  He even sent me an article to support this.  So their is one thing left for me to do.  Do I believe Dr Goldfarb and the original unsolicited internet article I originally read?

Yeah, it's a no brainer for me.  I'm really glad I dug a little deeper.  It was really nice to get to the bottom of it and put my mind at rest.   I do believe that the internet is a great source of information and as patients it is a great place to start.  But, the information you get from it should be corroborated and scrutinised.  At the very least, you should run anything you find out past your doctor or health care provider before you make any decisions.  It is also a good reminder that you can't always believe what you read on the internet.  Stay well:)

1 comment:

  1. Doctor Goldfarb is an awesome guy. A cystinurics hero.
    I'm so glad we have people like him on our side.
    Just want to say that my nephrologist is doing the only other study into cystinuria that I can find any trace of. Dr Sayer has changed my life for the better and with treatment has decreased the amount of stones I make.