Discussion Forums > Thalassemia Major

In Need Of Your Advise Andy

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Andy Battaglia:
The liver iron measurement is normally an R2* which is an inverse, so the lower the score, the better. 7 is considered the upper optimal limit. 15 is an indicator that there is a high danger of iron overload in that patient. Informational note: Heart iron was also once expressed as an R2 score but is now more commonly measured as T2*. R2* is the inverse of T2*. R2* (1/T2*). So, a low liver iron score is the target, while a high heart T2* is the target. (This was just discussed at the conference today). I cannot vouch that every country is using the same system of measurement.

Lena:

 That's why I was so perplexed and didn't know if I had to post--I did finally. We measure T2* here, but two years ago we started measuring R2* only for liver---btw mine is 1,0 and I keep on chelating with ferriprox and desferal both.

Lena.

Andy Battaglia:
Lena,

You are such an inspiration for all thals and to be honest, to me too.  :hugfriend

Emby:
Hiya Andy,

In my minds eye I feel you have gone on a 'Great Adventure' to some far away land equiped with your shiny armour, with a gleaming crested sword and sheild.....oops...should really be equiped with a note pad and pencil....or would a laptop/netbook be more accurate!....Anyway, in my minds eye, we are the ordinary folk waiting back home for some fantastic lotions and potions and all manner of cures... :biggrin!!
But really Andy, I thank you for taking time out again and thinking of others (you give advise to loads of other people with all sorts of conditions, not just us thalasseamics) and I know that what you bring back will be extremely valuable to all.

Ferriprox is available in syrup form in the UK, however I am a bit reluctant to give the boys this because of one young boys bad experience with it....maybe in the future.  I keep thinking tablets are better because they release over a longer period in the body and liquids might not be effective enough..... ???

About the blood.....I do mean 5 bags (averaging 250mls) all at once.  is that a bad thing? And only when you have the time to, can you please give me imformation about the spleen.

Keep well Andy, Big Hug
Emby       

Emby:
Hello Lena,

I completely agree with you about combination therapy. I think Ferriprox & Desferal work together brilliantly in reducing excessive iron in the heart and liver. I feel alot of people on here have benefited from it as well as our son.  All medication have side affects and some medications are more suitable for some than for others. Personally, I prefer this combination and our boys are okay with it too. Presently, with there low levels of ferritin they are enjoying having a complete break from the Desferal.
I can see from your photo that you are looking very well and healthy.  You seem to have a natural beautiful glow about you. I pray that you always keep well.

Take care.
Emby     

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