Started taking Exjade for iron overload from tra... - MPN Voice

MPN Voice

10,872 members15,188 posts

Started taking Exjade for iron overload from transfusions

skodaguy profile image
4 Replies

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.

...

Written by
skodaguy profile image
skodaguy
To view profiles and participate in discussions please or .
Read more about...
4 Replies
skodaguy profile image
skodaguy

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

Mazcd profile image
MazcdPartnerMPNVoice in reply toskodaguy

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

bruddery profile image
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 profile image
skodaguy in reply tobruddery

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

Not what you're looking for?

You may also like...

iron overload

An early happy new year to all. Just curious if anyone has iron overload from blood transfusions...
Bainbridge profile image

Iron regulation offers new treatment hope for incurable blood cancer

Published April 4, 2023 | Originally published on MedicalXpress Breaking News-and-Events A...
PhysAssist profile image

ET and taking iron supplements

Hi all Not posted or really been on site for a while as my partner has been quite ill and he has...

My new Rux journey

See end for reason for the image. -- I've been on Rux for just over a month. As posted I...
EPguy profile image

Best treatment for Post PV/MF ?

I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was...
MCW22 profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.