Revlimid plus ex-jade

[Ruth]

Hello, I am new to this forum. My dad is 79 and was diagnosed with MDS approximately seven years ago. He rec’d procrit every week for several years but this is no longer working. He has been on revlimid for about 5 months and recently added ex-jade to treat iron-overload due to 20+ transfusions over the past 18-24 months. Does anyone else have experience with taking both Revlimid and ex-jade?

My biggest concern is whether or not my dad might currently be dehydrated due to watery diarrhea over the past weeks. He was started on ex-jade in Florida a few weeks ago and has since returned up north. The doctor up north, who has been treating my dad for three weeks, has not been discussing the ex-jade dosage at all. Dad’s “total white blood count” is becoming dangerously low, per the nurse.

I’m not a clinician, but from what I have read on this forum, I think my dad should stop the ex-jade immediately. His hands are becoming wrinkled and his wedding ring is slipping off, per my mom this morning.

Help!

[jaxem]

ruth
if the new doc is not discussing exjade, does he really have an iron overload? 20+ transfusions over 24 months is a lot but doesn’t sound like a whole lot to me, however, I’m not a clinician either. maybe someone else on the forum will have a better discussion than me. good luck!

[Lydia]

Rev was working for mom until she added the exjade. It also lowered her white count. Stopped exjade – Rev working again. As you can see from previous posts Exjade not tested on people over 65. Most have not had good results combining the two if over 65!

[Leonard]

Hi Ruth,

I started exjade about a month ago. So far I have no side effects and my ferritin is down from 3200 to 2200. Ferritin levels should be checked monthly. Exjade should be stopped if ferritin is 500 or less. Also, liver and kidney function should be checked when on exjade.

[BETTE BOOP]

HI EVERYONE, I WAS TAKEN OFF REVLIMID BECAUSE MOST OF MY BLOOD COUNTS WERE OFF. FERRATIN IS VERY HIGH SO BACK TO THE BEGINNING.
RUTH, HOW IS YOUR DAD? I HAVE A MEDICATION THAT I CERTAINLY THINK WILL HELP HIS DIAHHREA. ITS CHOLESTYRAMINE. ITS A POWDER THAT YOU MIX IN WATER. HOPE HE CAN TRY IT. BEST WISHES

[Author]

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