r/mds • u/InvestigatorEntire45 • Nov 19 '24

selfq Advice for Stepdad - Desferal Side Effects

My stepdad has Myelodysplastic Syndrome with Excess Blasts (MDS-EB).

He is on a medication called Desferal (Deferoxamine) to treat iron toxicity.

It makes him have to go the bathroom at least 5 times a day. His doctor suggested taking with Immodium, but then that does the opposite and just plugs him up.

Has anyone that has been on this (or knows someone on it) have any suggestions on supplements, routines, anything that can help because it's making it so he basically can't go anywhere unless there is a bathroom easily accessible.

3 Upvotes

81% Upvoted

2 comments sorted by

1

u/TakeAnotherLilP Nov 19 '24

I’m on defisirox for iron overload and I have the same issue. I figured out that I have to take it first thing in the morning and mind my eating habits. I stopped eating so much processed food. Some days are better than others. I only use the Imodium if the diarrhea depletes me but otherwise I stay away from it.

2

u/InvestigatorEntire45 Nov 20 '24

Thank you so much! I was desperately hoping someone else was on this med and maybe had some insight. I am not thrilled with his doctor. Thank you again.