Exjade

[Joan2438]

Billboy;

In a different post you expressed surprise someone had bad experience with Exjade. I haven’t said much about Don”s but he had a very, very severe reaction to it that ended up with him in hospital for a couple of weeks. Needless to say, he stays a long ways away from it.

Joan

[billboy]

Hi Joan,

I didn’t mean to suggest you can’t have serious side effects using Exjade. As I recall in the other post the person noted that Exjade didn’t work, which I took to mean that it didn’t reduce the patient’s serum ferritn. That was my surprise.
I did not have bad side effects, but some patients have died while using this drug. So it’s especially important to monitor kidney and liver parameters closely while using it. I just got the results of my last blood test today which indicated my serum ferritn rose to over 1400 even though I’ve had no transfusion since a year ago, so I’m back on Exjade. I read labels and try to avoid foods enriched with iron, but I guess there’s too much red meat in my diet, not to mention other dietary sources.

Bill F

[marlene]

I thought this would be a good site to share with everyone. It lists the reports filed with the FDA on adverse effect of med. So I looked up Exjade and was surprised to see so many. I didn’t think Exjade had big market, hence the high cost.

So here’s the link…when you put in a new drug, it will give you info on the drug and you can click on the FDA safety reports see them.

http://www.patientsville.com/medication/exjade_side_effects.htm

Also, John has stopped his Exjade. I have one unopened bottle of 500mg tablets and one almost full open bottle sitting around…. .

[celebrations]

Hi Joan and Marlene, what do your husbands take instead of Exjade to reduce their ferritin-levels ?
I will be put on Exjade very soon with nearly 1000 SF, that’s what my hemo said. He recommended Exjade, because Desferal is to be very unconfortable to be applied. Any experience ? Greetings, Bergit

[marlene]

Bergit,

John is at a point where he will do a few therapeutic phlemobomites to get rid of the remaining iron. As long as his HBG is 10 or higher, he will have 250ml removed every other month. So this option is only good if you’re transfusion independent and can maintain/replace the red cells on your own.

He’s done desferral and exjade in the past and exjade is easier. With both drugs, he was never able to get to full dose though. It caused digestive problems. The Exjade, in the past year, was causing a rise in his Kidney creatinine levels. We also found that in the past year, his zinc and copper levels were low. We highly suspect Exjade was pulling out more than the iron. So you may want to keep that in mind and make sure getting trace minerals in your diet or daily vitamin.

Marlene

[lizab.]

Has anyone taken Exjade and NOT had a horrible time ?
Please ?
I’m due to go on it in a few days…
My Ferritin level is about 1300…just been tested for the first time after about 3 years of transfusions…it’s Hobson’s choice isn’t it ?
Liz.

[billboy]

Hi Liz,

Well I for one, did not have any problems at all except for diarrhea and then that was only at a dose of 2000 mg per day. Most of the time I took 1500 mg per day and found it quite uneventful. So you may well not have any bad side effects. Hope that’s the case for you.

Bill F

[Alice S]

Dear Bergit & Liz
Mom used Exjade, her ferritin was over 6700 when she started. It brought the counts down, but she had tx every 10 days by then so it did not solve the iron overload problem. But she had no side effects at all, test also showed that her kidneys, liver and heart were actually very strong despite everything.
Good luck.

[Mary4Mike]

Dear Birgit,

My husband took Exjade for a couple of years without side effects. It took his ferritin level down.

We are currently trying something alternative in place of the Exjade for now. His count is currently a little over 1000, down from 1500 in July. He has also had 2 TXs in that time frame. I will keep you updated on “our” trial. BTW we still have Exjade on hand and he did take 2000 mgs. immediately after both of the last 2 TXs.

Mary

[Jimbob]

I chose not to use exjade because of the possible negative side effects. I had received somewhere between 80 to 100 packed red blood cell transfusions in less than a year around the time I had my SCT. I have been transfusion independent for for over three years now. I have been using therapeutic phlebotomy for the last year at the rate of 2 pints every month. My ferritin level is now almost normal. Unfortunately, this method does not work if you are transfusion dependent.
Jim

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