Exjade

[JoyceDee]

My husband, Jim, just began taking Exjade. We would appreciate any comments from others who are on it. Has it helped eliminate iron? What side effects have been experienced? Etc…
Joyce

[marlene]

Hi Joyce,

Yes it does work. You can do a search on Exjade it will bring up all the post on Exjade. There’s alot of good info in them. Just click on the search button above to search this forum about Exjade.

Marlene

[jga_socal]

JoyceDee, jim may experience a quick reduction in his Ferritin level after the first month, but dont expect that to continue. This is not only my experience but the experience of 2 others I’ve met while getting transfusions at my hosp. Neither I nor the other Exjade users have experienced significant side effects. From my reading, this is the way I think it works.
The Ferritin molecule is where the body harmlessly stores excess iron, and is where your marrow gets iron to make hemoglobin. RBC transfusions introduce maybe a quarter gram of iron with every bag. The body tries to create a Ferritin molecule out of the excess iron. Once the maximum binding capacity for Ferritin is reached, no more Ferritin can be produced and any more excess iron starts binding to organ tissues, where long term damage starts to occur.
Exjade extracts iron from Ferritin, then eliminates it from the body. When Ferritin is reduced, more Ferritin is able to be produced using the iron from ‘other’ places in the body. It is a slow process for your organs to give up their stored iron to make Ferritin. If your own RBC production has shut down, like mine recently did, expect Ferritin levels to drop very slowly, maybe 100 points per month.

[jga_socal]

Found this in the aamds.org fall 2007 newsletter. Additional warnings regarding Exjade use.

Quote:

Revised Warnings and Adverse Reactions for Exjade® (deferasirox)
In May, the Food and Drug Administration (FDA) announced that the agency and the manufacturer Novartis had notified “healthcare professionals of changes to the warnings and adverse reactions sections of the product labeling for deferasirox (Exjade®), a drug used to treat chronic iron overload due to blood transfusions (transfusional hemosiderosis) in patients 2 years of age and older.” Cases of acute kidney failure had been reported after Exjade® came onto the market; some of the patients unfortunately died. The majority of the deaths, however, occurred in patients who had several other medical problems in addition to the iron overload and whose hematological disorders had progressed significantly. Besides the reports of deaths, there were “reports of cytopenias [low blood counts], including granulocytosis [low red blood cells], neutropenia [low white blood cells] and thrombocytopenia [low platelets] in patients treated with Exjade where some of the patients died…. Further, cases of leukocytoclastic vasculitis [inflammation of blood vessels], urticaria [hives], and hypersensitivity reactions [including anaphylaxis and angioedema] were reported.” Still it is not known how these problems are related to the use of Exjade®. The FDA advises “(h)ealthcare professionals…(to) monitor serum creatinine in patients who are at increased risk of complications, have preexisting renal (kidney) conditions, are elderly, have co-morbid conditions, or are receiving medicinal products that depress renal function. Blood counts should also be monitored regularly and treatment should be interrupted in patients who develop unexplained cytopenia.” Patients can find out more by talking with their treating physician and by reading more HERE .

[jaxem]

joyce
when my wife started it about 2 months ago, it was recommended that she have a hearing & sight baseline test because it is known to possibly affect these senses. it does work.

[JoyceDee]

jga: Thanks so much for the info on Ferritin. I had read the “warning” on Exjade. Jim has been on it a month now. He hates taking it…thinks it has affected his eyesight (blurring). Next week we will get results of test to see if there has been a drop in Ferritin.
joyce

[JSRN]

Quote:

Originally posted by JoyceDee:
jga: Thanks so much for the info on Ferritin. I had read the “warning” on Exjade. Jim has been on it a month now. He hates taking it…thinks it has affected his eyesight (blurring). Next week we will get results of test to see if there has been a drop in Ferritin.
joyce

Joyce,
Did you husband’s ferritin levels drop? How is his eye sight? Mom just had cataract surgery. She certainly doesn’t want to go back to poor vision due to ex-jade.

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