Wish us luck !!

Thanks everyone,

Lena,

She is taking Asunra aka Exjade,according to Novartis Exjade is to be taken alone,i know there are people who are taking desferal and its working,but i haven't heard of anyone taking Exjade and Ferriprox together.

Andy,

Yes i think i'll increase her dose.

Zaini.

Zaini,


does she take ferriprox too? if not, why?

Lena.

A combination of Exjade & Ferriprox?

Never heard before..

Zaini: Don't feel quilty. I do the same. What Lena says makes sense to me, but there is always a voice which said "why don't we give it a new try".

As for the ferritin. Has she have any side effects? I have read the update from Novartis, you can go to 40mg/k when Exjade isn't doing his job yet. However: Do remember that it took me 8.5 months before I saw THE drop.

I am glad to hear the transfusion went well!!

xxx Dore

Thanks Dore,

Z hasn't reached even 30 mg/kg,so my first goal would be that,and luckily today i had a chance to have a little chit chat with the ward doctor at the hospital,and he said that when patients start Asunra,we usually ask them not to expect any thing until one year,and its been almost 6 months Z has started asunra.

Zaini.

Zaini and Dore,

In our hospital there is a liittle girl of about 9  who has been taking ferriprox and exjade together for 6 months or so now and she is doing well. Of course I have to agree with you that she is an exception. Not many thals are on this combination.

Lena,

I am very much interested in any reports about using Exjade and Ferriprox together and the results. Most doctors have been wary of using the two drugs together, so this is a rare case. If you can get any information about how well she does on this combination over time, please keep us informed.

Zaini,

Another issue is that the first thing exjade does is remove iron from tissues - such as the liver, the skin and releases it into the plasma.  In order to actually see how well exjade is working you would need tests that can measure actual iron levels - and I know that these tests are not available to you.  I actually think that lil Z is doing better than ferritin results indicate - remember some patients see huge increases in ferritin levels when they begin using exjade but lil did not have this happen.  I believe that her tissue iron levels are much lower than what you may think that they are, especially because she has not transfused for too many years and then she was on combination L1/desferal treatment from such a young age.  I hope that ferriscan is available to you soon so that you can have some reassurance. 

Remember in the past lil As ferritin levels and actual liver iron levels were very different.  I think that the ferritin level readings will appear lower during the next 6 months.  Best of luck with what you decide with her doctor.

Much love to you and lil z,

Sharmin

well, i dont know from where i got this argue about using Exjad+Ferriprox in combination therapy but i m sure its true :
doctor's avoid using these medicines togather bcoze if one or both medicine react a lil wrong and patient get side-effects of on or both medicine then that will be dificult to figure out that it was bcoze of which medicine and if that is bcoze of both medicine .. both meds have their side-effect mild and worst both kind of , so they dont like to use both meds togather, and i think its never been tested anywhere , i mean no trials at all ...

Best Regards
Take Care
Umair

Andy,

In Greece we try a lot of new things but never without close monitoring. Up to now this little girl is o.k , no side effects, she avoids desferal hindering her growth (and I think this was the main reason the doctor replaced desferal with exjade), she has also gained weight, as she was skinny and had no appetite while on ferriprox and desferal. I will get more info on this and let you all know.

Umair,

we are always  critical on everything new. What about the desferal and ferriprox combination? Have we not been critical and suspicious on that too? I know I personally had been. But look at the results of combination therapy! If a side effect happens while on desferal-ferriprox combination, wouldn't you raise the same question? which med to blame? and if your reply is that we know which is which and what side effects each drug has, I will say the same for exjade and ferriprox: we are aware of the side effects of each drug. To tell you the truth originally I was not so much for exjade but I try to keep an open mind. As for Novartis it is logical not to propose a combination of the two drugs: the company tried from the scratch to pass exjade as an "orphan drug".

Anyway, let's see what the course will be.

Lena.

Sharmin,

I do agree with you about tissue iron level,but what worries me a bit is that we have seen cases where people were religiously compliant but they still ended up having iron in their organs,and since we don't have any means to measure organ iron,this thing sometimes worries me a little,specially when Z puts her hand on left side of her tummy and complains of tummy ache,it may be nothing,and it doesn't happen often enough,but when she complains about pain in a specific area rather then whole tummy,it worries me a little that who knows whats going on in her body  .

I asked the doctor about T2* and Ferriscan,they are not available in Pakistan,he said he went to last thalassemia conference and there he met people who design software for T2*,he came back and told this about the head of hemotology at the hospital,but he said costing was an issue and as knowing affordability issues,this was obviously not going to be profitable for them  although they have all the setup and machinery available ,they only need the software.

Lena,

I was really interested in the combination of ferriprox and exjade as they both are oral meds and are easy to take,but i was told that as they both work at cellular level and remove iron from tissues ,there is no need to take them together,but this would be a great advantage for people who either have desferal allergy or are on exjade but had severe iron overload in heart,do keep track of that little girl.

Zaini.

you're right Lene, but i was talkig to the aspect of countries where there isn't a good facilities to keep a close watch on subject ( patient ) body's reactions .. people who r living in the countries where is monitoring is not soo good and accurate shouldn't try these complicated ways of treatment ...  but  at all wat you said .. thanx for correction , God Bless You ...
let's hope for better results   in treatment of thalassemia and Chelation ...

Best Regards
Umair

had no appetite while on ferriprox and desfera

That's pretty strange. I could eat day AND night while I took 3x3 times ferriprox. Since I started Exjade I lost 10 kilo's & add 2 on my weight again.

same on me doore.....

i get 25 kilos heavyer with the ferriprox......
from 70 to know 95.........

                         panos

although they have all the setup and machinery available ,they only need the software.

Zaini, in my country here, they don't have the software, but they just send the CD of the MRI scans to be interrpruted in Australia and then they write the report there and send it back to Egypt again

manal

Manal,

Thanks for telling me this,i'll definitely talk about this with the doctor.

Zaini.

You are welcomed Zaini, good luck. I hope it will work.

Can Sylivia (ferriscan) comment on this.

manal