Exjade

[Warren Rich]

Has any one had problems with their kidneys while on Exjade? How effective has it been? I get blood every 1-2 weeks. My ferritin is about 3000.

[helenr]

Warren

My husband had no kidney problems, only liver problems. He had drug induced hepatitis which is a shame because he struggles to keep his ferririn below 4000. I have heard good reports on success rates but start slowly to allow the body to adjust and be prepared to wait a few months for it to work.

Helen

[jaxem]

warren
get’em checked before starting on it. get a baseline on kidneys, eyes & ears also.

[jga_socal]

No probs with exjade for me when i was suckin it down last year. my ferritin will be checked for the first time in 7 months on july 3 but the level was around 3000 prior to transplant during which time i prolly rcvd around 16 rbc units in 10 days. Now that i have a regenerative supply of rbcs via my new marrow, i’m starting phebotomies (sp?) next month to bring down Fe. IE: they’s just drain a pint of my blood every month or so. I suspect my Fe is now around 5000. Long term effects of hemosiderosis is organ damage but i’ve never heard the definition of ‘long term’ so i want to start bringing the Fe down asap.
I’ve posted about exjade before. You might search the forum for mine and other exjade posts. Seems like it can make your Fe come down quickly at first. But the decline slows quickly too, I suspect because the Ferrin is reformed in your system by other stores of Fe within your body. It’s only when the other stores are depleted that Ferritin can really start to come down for good. Since you’re transfusion dependent exjade may, at best, only offer a slight reduction on your Ferritin in the long term; that is if you can tolerate the stuff.

[marlene]

John never got to full dose and then last year we had to reduce it more because his creatinine levels kept going up. He was on it for quite a while before this happened. So each time it went up, he stopped it until it went back down and then went back on at lower dose. In the early stages, you may want to have your liver and kidney function monitored weekly for the first month or so. And then monthly thereafter.

Marlene

[gj]

I’m new to this Exjade routine, coming up on my first month of treatment. I know they did a creatin level and had me visit the eye doc and an audiologist to establish baselines for everything.
My fe level was 1313, which seems low by comparison to some of the others. Yet 2 different docs said I”m high enough to be on the med.
Has anyone found anything to help relieve the nasty, sandy taste? Also can’t find the answer to this — Is it OK to take it in cranberry juice? I’ve asked two nurses and got conflicting opinions — one yea and one nay.
Wishing you all the best.
greg

[CT MDS Patient]

Hello Greg, I started exjade (9/06) when my ferritin was 1123. I was able to discontinue it when it went down to 297 (4/07). Now that I’m transfusion dependent again, it’s a matter of time when I will have to start again…

Did you get the prescribing info fm Novartis (I keep all my literature)? It says “tablets should be completely dispersed by stirring in water, orange juice or apple juice until a fine suspension is obtained”. So I would say “no” to cranberry juice. I used OJ, which to this day makes me squeamish. Hope this helps.
Nancy

[covergirl]

GJ,
Been taking Exjade for sometime now w/breaks when traveling for obvious reasons.

I mix with water first, for pills to dissolve and then add apple juice. I prefer apple to orange.

I don’t think cranberry is an option either.

[gj]

Thanks to everyone for the info on cranberry juice. I just don’t care for apple juice. I like orange juice but don’t want to start associating it with the lovely sandy taste of Exjade. I began using gatorade, which I talked to a nurse about. It adds some flavor to coat the taste but is not overwhelming. I’m still surprised that I haven’t found anyone to give a definitive answer as to why not the cranberry juice. When I talked to the bioscrip people, they were unsure. I know quite a few nurses and no one else seems to know.
Guess I’m just one of those who can somehow manage to put a bump in a smooth road.
Thanks again
greg

[marlene]

Hi Greg,

We’ve used cherry juice, apple juice and pomegrantine juice with the Exjade. I would just shy away from any juice with lots of iron it it like prune juice .

IMO, if other juices were a problem, they would have stated that in the drug insert.

Marlene

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