Ferriprox-exjade combination therapy

 

hi lena

good luck for you....

u take 4 pills of 500 mg ?

i take 2 times 1,75 g.

       filakia panos

Efxaristo(=thanks)  Pano,

I take 1,250 daily. (1X500)+(1X125), twice daily.

Take care,
Lena.

A question to  people on exjade:

first of all I would like to state we have split the dosage in two. According to studies, exjade is not so strong as first believed to be and it is considered now best if the dosage is split twice daily. Thus you get a round clock chelation.
So,  I am taking it early in the morning, then eat breakfast after half an hour and then take it again in the evening and 2-3 hours afterwards I eat my dinner. Is that o.k or should I get exjade  2-3 hours after dinner, before going to bed? 
Another thing is the vit.c. We have raised the question of when is right to get vit.c but we have talked about desferal. But what happens with ferriprox-exjade combination therapy? In this case, I think, it is o.k if the vit.c is split in two as with these two chelators you get chelation all day long.
So there is no question to get the vit.c when starting the pump as you don't have one.
Of course, I suppose you people on exjade, get vit. C, don't you?

Any other piece of advice is welcome, too.

Lena.

Technically, desferal is the only chelator that was ever studie with vitamin C use, so most doctors won't recommend using vitamin C with Ferriprox or Exjade. ApoPharma has been clear about this when I have talked to them. Even though it may seem safe, because there has been no study, the official word is they can't recommend it. Personally, I have no trouble recommending vitamin C to thals in doses up to 250 mg daily. Also, because vitamin C washes through the body rapidly, I suggest splitting the dose in two.

I am not surprised about this new advice for taking Exjade twice daily. The half life issue was always a bit shaky, and the 24 hours coverage was not the maximum coverage that it could be if the dose was to be split in two. Also, we may very soon see amendment to the prescribing information for Exjade to allow its use with meals, so I don't think there is any problem with the way you are taking it, Lena.

Hi Andy,

Splitting the exjade is a new idea I just read, I think it is great since a lot of kids are having stomach problems with exjade. Splitting may help them overcome these problems.

Why is Exjade once daily? Because Novartis interviewed patients and asked them about a once daily chelator. Too simple. Of course everyone will say yes, but if they phrase the question, what about a once daily chelator, but the price you pay will be in your stomach, whereas twice daily with half dose will reduce stomach upset, which would you prefer? But they were so focused on the once per day, that they didn't really think it through. As I mentioned, the half life does reduce the effect as the day passes, and by the end of the 24 hour period, the chelating effect will be greatly reduced, but if it is taken twice daily, there is no increase in dose, but most likely there will be an increase in overall chelation, just as there is when you take a dose of desferal for 18 hours instead of 12 hours. The same dosage provides added chelation by stretching the dose out to ensure more of the 24 hour period is covered. Every doctor at the conferences stress that the goal should be chelation 24/7, and that was a strong hope with Exjade, but if half the dose is washed out in less than 24 hours, how much chelation can really take place during the latter hours? Splitting the dose in two will give a longer chelation period and may even have the potential to eventually lower the required dose for patients on maintenance dosing (maintenance dosing should be the goal for everyone using chelators).

hi lena

since abouth a year i take green tea caps. plus 80 gr vitamin C

i take 2 or if i use IV desferal 3 times a day......

they help me to reduce the foodiron and gave me the vitamin C i need.

                                                                        filakia panos

Thank you Andy,

you once again answered my questions.
My doctor said that if I experienced any stomach problems, switch exjade intake from before to after breakfast, considering that my breakfast is very light. But up to now there are no stomach troubles for me--hope that continues to be the case. You said, they are considering to suggest taking exjade with meals-that would be a very good idea because it would be much easier to drink it as an apple juice together with meal, let's say.
And of course you are right, the longer the chelation, the better the outcome. I will also stick in taking vit c in two doses, that seems better, as now with two oral chelators I practically get chelation  all day long.I have, though, taken the initiative to start with a lower exjade dosage and gradually raise it to what my doctor has suggested.

Pano,

I have rejected the idea of using any more supplements as my ferritin level can do without them.
Thanks for the suggestion, though.

Everyone, please, bear with me, my considerations and my constant questions. I promise to bring them to the lowest  limit...

Lena.

Lena,

Your input and questions are of much help in guiding others, especially since you are often pioneering new directions in managing thalassemia, and your results are of great interest to all, so please don't even think about not asking all questions. The questions posed are what drives this group.

Thank you, Andy.
 

Lena.

Lena,

I am so late in wishing you the best of luck, but i hope you are doing well my friend. Please check the kidney and liver funtions (at least monthly) until you are totally sure that the two chelators togather don't affectthese organs in particular

manal

Manal,

thanks a lot for your wishes. Yes, some tests are in order now. Luckily in my Unit they keep a very close eye on these so I only have to worry whether exjade will suit me and have a good outcome. For the time being I am on a low dosage but from tomorrow I will raise it to what is normal for me.

Take care,
Lena.

This would be really really great if kids can take exjade with meals,because finding time through out the day when the stomach is empty is getting very hard,because of schooling and everything,IP6 is also to be taken on empty stomach so right now its almost impossible for us to think about splitting the dose of exjade,if it will be allowed to be taken with meals,that will solve the problem.

Zaini,


now that I am personally involved with exjade I try to think alternative solutions to ease things.
What about taking it in the morning(first dosage) and 2-3 hours after dinner before going to bed(the second one)? I am telling this because we have now established that two dosages are better than one as far as chelation is concerned. I think it is better to give priority in splitting exjade than being concerned how to take IP6. --- my humble opinion ---

Lena.

Thanks for your opinion Lena,it means a lot I guess i'll start splitting the dose after Z's upcoming ferritin test next week,so that is there is any fast drop in future,we'll know that dose splitting made that difference,another thing,she is taking 600 mg Asunra right now,and we get these here in 1 tab of 400 and 2 tabs of 100 mg,would that be ok if i give her 400 mg at one time and 200 at the other? Or should i ask Novartis to let me buy all 100 mg tabs?

Zaini.