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Helen Robinson Tue Jan 9, 2007 05:03 AM

Exjade and liver inflammation
Hello everyone

We were very excited when my husband began Exjade a month ago. He has had 71 Txs and had been infusing desferal for a year. He was enjoying sleeping without his infusion pump and had no obvious side-effects. Unfortunately recent blood tests showed liver enzymes increased by ten times. This means he has to stop the Exjade and some other medications. The MDS specialist Dr returns from holidays next week.

Has anyone had similar results? How long did the inflammation last?

Thank you


Wendy Beltrami Tue Jan 9, 2007 09:58 AM

Hi Helen,
Yes, my son had both liver enzymes and kidney function tests that were elevated. We had to be sure that he AGRESSIVELY hydrated with water every day. I mean like 10 bottled waters a day in order to keep those numbers in range. He only took the Exjade for a month and after stopping, the numbers came back down after about a month. His Exjade dose was 1500 per day for his weight of 150 lbs, FYI.

Wendy/mom to Grant
age 15
dx 12/4/98 AA

Marlene Wed Jan 10, 2007 04:40 PM

Hi Helen,

John is currently on xjade and his liver and kidneys are doing fine. With that said though, John is not on a full dose. He started with 500 mg and is now up to 750 mg. We did this because many of the side effects are dose related and John is pretty sensitive to meds after his treatment. He is no longer transfusion dependent so he can afford to be on a lower dose and have still be effective.


Helen Robinson Wed Jan 10, 2007 10:46 PM

Thank you Wendy and Marlene

Some more questions please.

Wendy did your son only take the exjade for a month because of the raised liver marker? Aparently the protocol is to stop the meds until counts are normal and then start at a lower dose and monitor weekly not monthly as we were told. David has stopped all but essential medications to give the liver a rest. Fortunately his autoimmune arthritic condition has settled and his pain level is lower. it will be interesting to see how he goes with no vitamins etc. even things that support liver function will still put a strain on the liver when it is inflamed. They are calling it drug induced hepatitis.

Marlene, What treatment did John have to put him in remission?

Thanks once again. Exjade has only just become available here.


Wendy Beltrami Thu Jan 11, 2007 12:01 AM

Unfortunately, the reason Grant stopped Exjade was because of the cost. I truly thought we could fight with the insurance company and win, but so far, to no avail. We are going to have to dig deep and pay the big amount soon. (our copay is $2,114.95 for a 30 day supply).
Here is a snapshot of his Exjade experience:

10/19 ferritin level 2092, BUN 34,creatinine 1.3, bili total 1.1

10/23 start EXJADE 1500 mg per day for 30 days only

during the time on EXJADE,
BUN went as high as 38, creatinine up to 2.1 and bili total up to 1.6 (all 3 flagged as high)

12 units of prbcs transfused since EXJADE was started

1/8/07: ferritin level 1779, BUN 22, creatinine .8 bili total 1.0

So, I think the Exjade works because in spite of 12 more units transfused, his ferritin levels are still down by over 300. I was told also by the nurse practitioner that the Exjade has a long half life, so that it is still working for some time even though he is no longer taking it and his chemistry numbers have mostly come back to normal range. (BUN still a little high at last check)

Wendy/mom to grant

Marlene Fri Jan 12, 2007 09:51 AM

Hi Helen,

John is in a stable, partial remission from SAA. He did High Dose Cytoxan at Johns Hopkins in 2002. He had well over 200 units of Red cells so his iron was real high. He's done Desferral.....never got to a full dose and had lots of nausea and bruising from the needles. He also did phlebotomies for a while but that got to be to taxing for his bone marrow. So now he's on Exjade, 750 mg. His doc at Hopkins told him that for the first few months on Exjade, he wanted a cbc and chem panel done weekly to monitor white cells, liver function and kidneys. I hear of so many patients starting off at the "standard dose" from the start and don't have a follow up with their doc for one to three months. Exjade is too new and combined with the other drugs people are on, you just don't know it's effect. I bevieve it's wise to proceed slowly.

The other thing that enters into it is how well your liver detoxification processes work. And that process is never assessed. If you know up front, then you can tailor dosages better. Genetically, there can be differences which impact the efficiency of the liver. Also age should be taken into consideration. Some people can handle drugs better than others and clear them from their system quicker.


EmilyK Sat Jul 28, 2007 10:48 PM

I was on Exjade for 4 months, and it did effect by liver, but not enough for them to take me off of the medication. I was on a very high dosage of +2500 mg. My liver fuction improved as soon as I completed the medication.

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