Exjade & hearing loss

Hello everybody. Im new herre and my first and most important questio is: Does anybody suffer from loss of High frequency hearing under chelation with exjade? Im 42 yrs old and I went from Desferal s.c. and i.v.  to ferriprox and since 2005 Exjade. Since almost 3 years I have this Hearing-problem and besides my liveriron continues to rise. Dont know the nmbrs exactly but we have made a Squid every year, last one 2 weeks ago,and its seem not to work out for me. My decission is to turn back to ferriprox or to combine the two of them. Need Help on this...

As with desferal, Exjade can cause hearing loss. It is not a common side effect, but it can occur. I don't think that the effects of years of desferal use an be discounted, ether, so it could be either drug or a combination that has led to this. The three chelators currently available can all be used in combination of two of the three, so Ferriprox and Exjade can be used together. This is being done at some of the US centers and has also been trialed in Greece. Results are good and somewhat comparable to the Ferriprox/desferal combo. With liver iron rising, a combination is in order. The one precaution with Exjade/Ferriprox used together is that white cell tests are advised on a weekly basis. One other thing that can be tried is splitting the Exjade into two doses, taking half in the morning and half later in the day. This will give a true 24 hour chelation period, which cannot be accomplished by once daily dosing. We have seen this method used by patients for over 4 years now and it definitely works. Iron stores drop, and side effects are lessened, as only half a dose is taken at once.

Ok thank you. Next question, if I combine Exjade and Ferriprox whith wich one do I start? Exjade in the morning then 2 times Ferriprox? And how much of each? Mg/kg.? My weight at the moment is 65kg

  Oh I forgot the most important Question. How can i get my hearing back on a normal level again!??

Can you give me some idea of what your iron load currently is? Ferritin plus liver and heart scan scores would help in advising you.

Ok here some numbers: Ferritin 2800, Transferrin 190, Tranferrin-saturation 115% LDH174 U/l
g-GT29, GPT(ALT) 46.U/l  GOT(AST)40U/l , Cu86µg/dl, Zinc 96µg/dl, nt-pro BNP 66pg/ml and
 Vit.D (25-OH) 34ng/ml

The ferritin does need some work. Combination chelation can get your iron low enough so you can use one chelator only. If your liver iron is high, either desferal or Exjade should be one of the chelators, with Ferriprox as the other chelator. Because you are concerned about the possible side effects of Exjade, it might be best if you take Ferriprox full dosage, 3 times daily and then also take Exjade 3 times a week. Split the Exjade in half and take twice daily. Make sure you get your white cells tested weekly and observe to see if your ferritin drops, before taking Exjade more often. Once you get your ferritin lowered to below 1000, you should be able to take Ferriprox only.

Hi Andy, today I got my prescription for Ferriprox. My Dr. told me to take 1000mg 3 times dayly.
So just to be shure, did you mean that I should "alternate" with exjade 3 times a week?
 OR take the whole week Ferriprox AND additional Exjade on 3 days? And how much? my weight is 65kg. Are 1500mg OK? If its so should I just replace the morning dosage?
 I mean, Exjade(morning) then Ferriprox (evening & Afternoon)
And when do I take my Calcium? Are two hours after the last intake (evening) enough?
PS: I´m alergic on Desferal (since 94, it came out of the blue, I react with several anaphylaction)
Please answer as soon as possible because I should start on Monday 07.07
Thank´s 4 your help.

Because of the possibility that Exjade has impaired your hearing, I feel you should only take it 3 times weekly, but take Ferriprox full dosage every day. The dose of 1500 is good for now. Try this combination and see how things go. Once your ferritin gets below 1000, you can most likely cease the Exjade and rely only on Ferriprox.

Calcium can be taken right after a meal. You should take calcium and magnesium together in a 2:1 ratio of cal to mag and you should take vitamin D (2000-5000 IU) along with this to ensure better absorption of the minerals.