Exjade working?

[Dick]

I’ve been taking Exjade since it became available just over one year ago. My feritin count still runs from 2500 to 3000. I am taking 3000 mg daily (6 of those white pills in my orange juice) plus desferal with each TX . . . every 2 to 3 weeks.

Any thoughts?

Dick

[covergirl]

Hi Dick,

My 2nd round of Exjade is doing pretty well. No reactions and my ferritin levels are down from 2300 to 1600 from Oct. to Feb. Includes maybe 2 treatments of deferal which wasn’t doing anything against my monthly tx of 2units. My hemo said she is working to get my ferritin under 1000. I would like to reduce dose then.

As far as thoughts on why not, are you receiving Transfustions? How often and how many units? If often and more than 2units, it may just take longer and keeping the levels from increasing. Just a thought.

Take one day at a time. Best wishes,
–cheryl

[patti]

Dick,

It does not sound like the Exjade is working. My MIL was transfusing two units every two weeks and only taking 250mg – 500mg of Exjade and she was dropping her ferritin 250pts (I don’t know what the measurement is) a month. That’s with 4 units of blood going into her.

Are you taking any sort of calcium/magnesium supplement with or close to your Exjade? That could render it useless. Otherwise, this drug does not appear to be working and it’s not good to stay on something that isn’t working. That’s an awful lot of Exjade. As undesireable as it is, you might want to consider trying desferal daily or even just 3 or 4 times a week without the Exjade and see if you start seeing a drop. I have a friend who only used desferal 3x’s a week (was supposed to be 7) but managed to drop her iron by 1000 even while getting transfusions.

Also, this is certainly something to talk to the drug company about. Since Exjade is so new they still don’t have a lot of data on it but it would be interesting to find out if anyone in their trials also didn’t have it work for them and what Novartis says about it. My MIL no longer takes Exjade as we found it to be dropping her white cells too much. We and the doctor talked to Novartis because others are seeing this also. They are now gathering info on it.

Patti

[Dottieb]

Dick, John is on 500mg 3 times a week. His feritin level is much the same as yours. He however is getting tx’d about every 6 days so at that rate he is probably just staying the same. Dr. won’t let him go more than 3 days of exjade as counts are so low. He is now also on protein aphresis..that because of high protein levels and myloma. Had 5 treatments this week and it has taken a toll on him, very tired and discouraged. New feritin counts should be avalible on Mon. Will let you know. Dottieb

[cthomas555]

Dick, I agree with “Covergirl’s” message. it seems to me that the Exjade is working to maintain your present levels, though it may not be working to remove the overload prior to you starting Exjade.

It is removing the iron that you are loading from your current, frequent tx or the numbers would be dramatically increasing.

Chris

[Dick]

Thanks for your responses. I’m getting transfused about evry 2 to 3 weeks . . . two units each time and am not taking any other medications that might effect the iron count. I have had 80 TX in the last 3 years + . . . but who’s counting. I do notice that if I get too close to the refrigerator door, it tends to grab me.

Might talk to the Pharam company that does Exjade and see if they have any valuable insights for me.

[Dottieb]

Dick, John’s feritin counts came in today and for us it was nothing short of a big surprise. As I said his counts were 2800+, today they came in at 1800+. Very good, considering the amount of blood being tx’d. He is still very tired and having trouble with diarhea

[Dottieb]

I guess I goofed, will finish now. We are sure it is the exjade but will have to plug along. Dottieb

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