Started taking Exjade for iron overload from transfusions

[skodaguy]

Did this for 3 reasons. I am one of a handful of around 20 people taking both drugs with rux maybe one of 10 taking it with with a trial drug as well. Why do I do it? Other patients took the gamble to try rux and imatinib and lost their gamble so I feel I owe my opportunity to them.

Pure research. This disease will not be curable in my lifetime so I have been lucky to benefit from other peoples sacrifice and I am morally obliged to make my own

Lastly I am curious as someone with a scientific background who has had to take life and death decisions and have those conversations. Please do not enquire too much . If yo are not from my world you will not be comfortable.

I have become totally constipated after just 2 doses of 7mg/kg despite avoiding the runs after taking rux and imatinib together. Probably the most expensive laxatives ever!

If you are put on Exjade I recommend 2 things. Lots of fluids to put water into your gut and lots of fibre to retain it.

Please see below article.

University College Hospital Exjade® treatment for iron ... - UCLHuclh.nhs.uk › PandV › PIL › Exjade® treatment f...

PDF

many years to develop as the liver is better equipped to deal with iron overload than other ... Exjade® has been shown to remove excess iron from the liver and heart, and reduce ... and constipation lasting about eight days. These are typically ...

Ferrous sulphate which puts excess iron into the gut is notorious for causing constipation. This drug keeps iron there which is the same thing.

...

[skodaguy]

Perhaps I should mention 1 more reason which we all share. Survival

[Mazcd Partner MPNVoice in reply to skodaguy]

Hi Skodaguy, also sending you good luck and best wishes for being on this trial. Maz

[bruddery]

Hi there skodaguy. I’ve followed your page for a number of years. I can honestly say that you have been a huge inspiration to myself and no doubt many, many others over this period. I wish you the very best on this trial, it takes a special kind of person to do this. Thanks for taking this on. Best wishes and good luck with everything. Janice

[skodaguy in reply to bruddery]

Thank you to everyone for their support. It helps more than you could know