Discussion Forums > Thalassemia Major
Little Ari
Andy Battaglia:
Cari,
The ALT is 10 times normal. The other levels are double. If Ari is taking it once per day, try splitting the dose and taking half in morning and half later in the day. Keep him well hydrated and if at all possible, get the tests done early in the morning, as the results won't be affected by activity. Tests run later in the day tend to have higher levels and may not be as accurate. I would also suggest delaying taking Exjade that day until after the tests are run. If he continues to have high readings, he may not be able to tolerate Exjade at this time. The other oral chelator is Ferriprox and has only become available to patients in the US at the beginning of this year. I don't know if there are age restrictions on the drug's use here. Desferal can be the last resort, but it is tried and true as a chelator.
Cari:
Thanks for your responses!. Initially, the doctor didn't recommend us to split the dose and we were having a hard time splitting the dose because ari was going to daycare, we were both working and we were nervous to send the exjade to school. However, I was finally able to convince the doctor to prescribe the 150 mg tablets so I could easily do this.
I will try your methods andy, hopefully, it works. I am hoping they reduce the dosage before going straight to desferal. The worst thing for me is that we are so compliant:-( there are so many parents that don't even care she miss doses!. I make it a point to hydrate and ensure he has all of it and here we go with another dilemma.
I hope he ....WE can adjust to desferal if we need to.
Sharmin:
Dear Cari,
I hope that Ari will do well with the reduced and split dose of exjade. For now it may be best to keep him on a very low dose. A low dose won't work to reduce his iron but it will remain in his body to bind free iron. The low dose will also be less likely to cause the side effects. Sometimes temporarily stopping exjade and trying another form of chelation is helpful. Likely, you will be able to resume exjade at a later time. There are more options available every year. If you consult Dr. Vichinsky he may be able to tell you about the latest oral chelators being investigated.
If you require desferal - perhaps desferal can be used in combination with an oral chelator so that you are not using it very often. Hopefully adjusting the exjade dose and splitting it will resolve the problem but if it doesn't we have many tricks and methods that we found helpful when our son was little.
Let me know if I can help with anything,
xo
Sharmin
Cari:
Thank you Sharni!
So here are the results for the past few weeks. The ones on the bottom are the most recent - they seem to have dropped from the last time. They have kept him on exjade until the doctor gets back from vacation.
November 17
ALK 157
ALT 352
AST 133
OFF OF EXJADE FROM 2nd WEEK OF NOVEMBER THROUGH DEC 8
December 8
ALK 165
ALT 69
AST 63
PUT BACK ON EXJADE FOR 2 WEEKS
December 22
ALK 242
ALT 620
ASR 97
December 29
ALK 219
ALT 89
AST 50
So i'm not sure if this is a good sign or bad but I wanted to share and see if anyone had any insight. Thanks in advance!!!!
Andy Battaglia:
That's a huge drop in the ALT and very encouraging. Perhaps his body is finally adjusting to the med. I would suggest splitting the dose so his body does not have to process the full dosage so quickly.
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