Experiences with

Exjade

I have also heard that the iron chelation drug Exjade is now off license so my health authority might pay for the generic version hence relieving me of sleeping with a needle stuck in my stomach 3 nights a week. See!

Just an advisory that Exjade is a potentially toxic drug and maybe don't take it unless totally necessary. Have now recovered and hope to do the Tissington Trail with a friend who is an ex-marine on Tues.

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 ... - UCLHwww.uclh.nhs.uk › PandV › PIL › Exjade® treatment f...

Ignore the iron level, take exjade now or wait to see if I become symptomatic. I was also told that as a Prof he had never seen a transfusion dpendent patient develop secondary haemosiderosis. I decided to give exjade a go for 3 reasons.

My iron levels are monitored regularly and I do have to take Exjade to prevent iron overload in my organs. My heart, kidneys and eyes are also checked regularly and I take my yearly flu and pneumococcal injections. I also take folic acid and penicillin daily.

Has anyone had experience of Exjade/iron chelation? I'm going to have another bone marrow biopsy to discover why erythrocytes are not being produced. Does anyone have any idea of what the possible causes could be? What happens if the bone marrow does not recover? Thanks to you all, Peter

Exjade was the preferred route. I thought, "well I've waited a year for some sort of drug therapy, let's go for it!" Eleven days in and I explode in an itchy rash, fever and am breathless beyond normal MF symptoms. GP and Haemo agree it IS an allergic reaction.

Iron overload from the transfusions is being fairly well treated with chelation (Exjade), but there are side effects. There is not enough evidence from the latest bone marrow biopsy to support an MDS diagnosis. At 74, I feel well and keep fit (running/weight training).

Has anyone been prescribed Exjade for iron overload? My consultant has prescribed this but reading the notes about it there are all sorts of dire warnings about not taking it if you suffer any kind of bone marrow problems. MF?

My husband has myleofibrosis has had this since 2009 he requires three units of blood every two weeks and is on exjade for iron overload. His white count is around 1.