slow increase in ALT with Exjade

Andy,

need ur advise and input...Little E's ferritin is around 500 with 500mg of Exjade every morning. Lately she had 2 throw-up incident and we were worried if Exjade is the culprit. so, we mentioned it to her RN at Children's. Her RN looked at her number and says yeah, something may be going on...her ALT has increased over the month and now it is at 80. It is a slow trend up and we are watching it. Nothign to worry...but I am worried

what does slow trend up mean? do we have to stop exjade and go back to desferal? nothing wrong with that as soo many people use it. But for a 4yr old, after a lot of struggle, we are now in a routine with exjade. so, to go back to desferal will be devastating to me & my wife. also, she is on exjade for almost an year....it is not a sudden reaction to exjade. what is your thought? have people seen slow ALT increase? do the increase stop at some point?

Hi Bostonian,

It's not uncommon to see the ALT score rise on Exjade, but the drug does not need to be stopped until it is 5 times the normal level. Is she taking a split dose (twice daily)? This has helped with some patients and also helps reduce the nausea. I feel that staying well hydrated is also important with all chelators. You may also see a lower test score if it is done in the morning as there is quite a bit of fluctuation in the level throughout the day.

I wouldn't be overly concerned. This level is regularly monitored and these increases are fairly common, as Zaini has chronicled. Also, with the low ferritin, it may be time to either lower the dose or take a short chelation holiday. With her recent problems of vomiting, a brief holiday may be welcomed by little E's tummy.

Our experience with Little Miss A had been the same. The throw-up incidents stopped when we split the dose of 500 (250 in morning and 250 in evening) and exjade was given one hour after breakfast and dinner. Exjade is known for this side effect. The ALT level increases slowly but should be monitored carefully, if it reaches at intolerable levels (each country has its own number), the exjade has to be stopped until the ALT goes down to tolerable levels. The level of 500 ferrtin is best in Thal major, in Canada the exjade is stopped at this level until it reaches 1000 again, this is done specially to give break from exjade. I found that HSC tries their best to give appropriate breaks from exjade as the drug is still new and long term effects are not known. It also helps normal ALT levels and undue stress on the kidneys.

Hope this helps.

Andy, your reply put me at ease. so Thank you for your reply.

Canadian family, Thanks for sharing Little MIss A's experience. also good to know HSC protocol with Exjade. I'll share this with Dr. Neufeld.

Just got a call back from Little E's hemo and he told us to completely stop Exjade. I am a bit frustrated..even in thal center of excellence, they just let the ALt go very high (it is 300 today) before they told us to STOP Exjade. As a center of excellence they must be aware that when ferritin is around 500, side effects are seen and Exjade should be stopped. why they didnot follow this protocol, I don't know. As a parent, we have to watch everything like a hawk. Thanks to this forum, I was aware of what to look out for.

I think this brings up a very important point. Patients are always guinea pigs, and the recommendations on how to use treatments such as chelation, will change with experience. As a group, we are beginning to understand why chelation was stopped when ferritin dropped to certain ranges (1000, 500, 300, etc.). All chelators are not equal in this regard, so we need to find levels at which chelation should be reduced or stopped completely for a short period. Exjade is still relatively new, so this cut-off point is still being researched. As parents and patients, you have to be ever vigilant in watching these test results each time. Small increases in ALT's are common, but when things escalate quickly, alarm should be sounded and the drug discontinued until the ALT returns to a normal range. Please note, that with serum creatinine, alarm comes much more quickly. A level of 33% above normal demands immediate cessation of Exjade.

Can we blame the thal centers? Hmm. They too, are constantly learning, but maybe we, as a group, have certain advantages in numbers and varieties of people, that the centers don't have. We may be a bit quicker to learn new things because so many people are contributing here. Whenever possible, do bring topics like this up to your doctors, so they are aware of what others have experienced.

Exjade is a drug that raises many concerns and monitoring must be done frequently to ensure safety in each patient. Older patients, especially, should watch their test results very closely.

Great Point Andy....The collective knowledge of this site is invaluable and your advise always..always helps to calm down the nerves and helps to look for right steps..Thank you.....

Want to give an update here....we split the dose (currently ~  12mg/Kg)) and gave 1/2 in the morning and 1/2 in the evening. Our daughter's ferritin is at 500 and ALT is around 30. The hemo did not tell us to split the dose....We followed Andy's suggestions & knowledge from this forum ....so, Thank you Andy and all the Thalpal friends for sharing your experience....

Bostonian,

That is great to know!  Once again, Andy has been more helpful than even the best doctors:)

Sharmin