Wish us luck !!

I put a glass of orange juice in the microwave untill it is warm. I take it out the micro wave and I drop the tablets in it.

Dore, the warm juice could have an effect on the exjade..the chemicals may change, i don't know but it will be better to use the juice at room temperature till you know for sure that this is okay

manal

Dore,

Perhaps we have more tests done because we are part of a study and also because Little A is on combination therapy.   The research team in Oakland has instructed us to do these particular tests.  

We have been breaking up the pill because we find that it dissolves faster - and I thought (perhaps in error) that if the pill dissolves quicker then my son drinks it before it has a chance to be degraded by the medium that it is mixed in.   The techs in Oakland have told us that the reason exjade is taken on an empty stomach is that exjade is very quickly degraded if mixed with food or drinks.  We were told to mix it and have my drink it as quickly as possible so that the juice does not degrade the exjade.  I will find out whether it is okay to break the pill up before placing it in the medium, in the meantime perhaps it is best for everyone to place the pill into the water/juice whole.  When I spoke with the doctor in Oakland over the phone I had even asked him about the possibility of using a pill crusher (we have not done this).  He said that he did not know of any reason not to do this nor did he recommend that we do it.  He did not have an issue with us breaking up the pill however. I think that the warning is against chewing the pill because perhaps the saliva in the mouth may make the pill less effective.  I also think that they want the pill to be taken in its entirety because exactness of dose is of concern.  Again, these are my assumptions.   I am not sure what breaking the pill can do to compromise the effectiveness of the pill - the pill breaks up once placed into the juice anyway.  I will try to get information on this as soon as possible, and no one better to answer than Novartis.  

I would be cautious about placing the pill into heated juice - I assume if anything that could alter the effectiveness of the pill.  I would stick with cold or room temperature.  

Zaini, again I am hopeful that everything will go well.  You can take comfort in the fact that we have many 2 year olds on exjade and little A is taking exjade/desferal in combination.  My prayers are with Little Z - and I am hoping that she will tolerate exjade very well and that her iron levels will drop.  

Best,

Sharmin

I have placed a query, I will post the answer as soon as I receive it.

Sharmin

Hi Canadian Family,

Your two cents are very valuable for me  Evening time sounds better right now,because she spends her day in school,so it would be difficult for me to keep a watch for anything unusual ( which hopefully won't occur) ,and i don't know if her school has a doctor present whole day,so they'll eventually call me,and her school is on 30 minutes drive from my place,so it's better that she'd be home when she takes it.Yes she is very eager to get rid of the pump,i hope that will be the case.

About the juice,which juice do you guys use? Fresh ones or carton packed,i am asking because when last time a doctor from Novartis came at our hospital he said " PLEASE DO NOT MIX ASUNRA WITH CARTON PACKED JUICES" i asked about the "Nestle Pure Orange" we have available here,which says no sugar and no preservatives? his answer was a big NO ,he said only home made freshly squeezed juice or water ( water he recommended is best).I am planning to dissolve it in the water first,then if she can't take it,i'll switch to home made juice.

Thanks Dore ,

For your input,plenty of water is my concern also,let's see how much she can take in.I would also advise you not to put the pill in warm juice as heat can effect chemicals.
We recieved our box of Asunra today,the leaflet inside is quite scary,but i can't help not reading it again and again  to make sure that i understand everything and won't forget anything.I am hopeful that it will works as we have seen a few kids on the forum who are doing fine with exjade.

By the way,i couldn't find the instruction about NOT BREAKING the pill on the leaflet,it just says the tabs should not be chewed or swallowed whole,as Sharmin said the pill breaks up once placed in the juice anyway.

We have done tests for creatinine and SGPT and will recieve results in the evening,so Inshallah she'll take her first dose tomorrow evening.

Thanks Sharmin for posting the query,do inform us about their reply.

Zaini.

Dear Zaini,

I have received a response to my query.  I have been told that there is no logical reason for not breaking the pill before dissolving it in the medium.  The only reason it is recommended to dissolve the whole pill in water/apple juice/orange juice is because this is the only way that it has been administered thus far.  Although it may be completely safe to break and even grind it in a pill crusher - they cannot recommend it because it has not been administered this way in the studies. 

When my son received Exjade in Oakland they dissolved it in juice from a carton so we have continued to do the same.  After reading your post Zaini, I think that I will be making a few changes.  We will now dissolve it in water and place it into the water whole  

I believe Novartis is doing studies to determine other ways that exjade can be safely and effectively administered.  I will post the results when I receive them. 

Best of luck to my sweetie, little z   

Sharmin

Oh, by the way - little Z - I am also glad that you are saying goodbye to the pump.  This is the change in thalassemia management that we can celebrate

Sharmin

Oh, by the way - little Z - I am also glad that you are saying goodbye to the pump.  This is the change in thalassemia management that we can celebrate

ME TOO ! .. so pleasedont forget me when you are gona celebrate  okiey ....

@ zaini
i wana say that let her teacher to know that she needs to drink  too much water soo please permissionn her to drink water in her class without sending her out side the class to drink water ..tell her teacher to remind her after every 30 minutes to take half gllass of water ( without going out side ) ... also tell Lil Z to ask if her teacher forgot to tell her to drink water ... and also that she need's to drink a lil more water than her regular/routine ... if her teacher wont to help in this case , just knock the door of principal's office, i hope principal will understand better and he/she will pass the order to all teachers of Lil Z .... i will share more if i got anyother idea ...

WISH YOU ALL THE BEST FOR ASUNRA !!.

Best Regards
Take Care
Umair

Hi,

Those leaflets are different! We will start with a course of Dutch. In the one I got is written that:
1) los de tabletten niet op in bruisende dranken of melk
2 Kauw niet op de tabletten, breek ze niet en*maak ze niet fijn*; I think they make a type mistake here: maaL ze niet fijn
3 Slik de tabletten niet in hun geheel door


1) Do not dissolve the tablets in fizz drinks or milk
2) Do not chew on the tablets, do not break them and  *do not make them fine*; or do not crush them 
3) Do not swallow the whole tablet

I want to say also something about the side effects. If your child never had a (bad) side effect from desferal, she will tolerate Exjade well.

I am deadly allergic for desferal. It took my breath at an evening in Oct/Nov 2006 and my whole skin turned into red ulcerates . I was at home with my mother at that time.  When I started with Exjade three months later I started to get ALL side effects what are writting in the leaflet. I do not know of I had also a kidney failure at he time, because no tests were done. I decide to stop when I lost my sight. I lost the count, but if I am right then this is my 4th try.
(My ear tests came back as pretty good a few weeks ago)

My pharmacist told me that he believe that I only receive too high doses of desferal in a specific time. I still want to try desferal again, but no one is with me. I still prefer desferal above Exjade.

Btw does someone experiences tingles in their feet? I develop this thing after I started with Exjade. It really annoys me. It is like your feet does not get enough oxygen, but it is a bit different.

Sharmin,

Yes it would be time for celebrating,lets see how she does with exjade,and lets hope her ferritin will go down soon enough.I received her creatinine level and SGPT results.

Serum Creatinine = 0.6 mg/dl
Normal ranges are from 0.65 - 1.1

SGPT (ALT) = 22 IU/L
Normal ranges are from 3 - 33

So i guess these are normal ,right ?

Umair,

Thanks for the advice,i am going to ask her teachers to give her that favor ,i am sure they won't mind it.

Dore,

This is strange ,these leaflets should not be different,there is nothing about not breaking them or not crushing them written on the one i got.

I think i should stop ferriprox from tomorrow morning? As she'll recieve her first dose tomorrow evening.

Zaini.

I was wondering; have Asunra and Exjade any other difference except the names?
This information has been always in the leaflet. But these packs of E. have a bigger leaflet with more information, i think. It says that the last update was in July 07,but I believe it must be 08.
Btw, with the change I could also see where they came from. They are from the UK and they coming from exactly the same place as deferiprone! (L1, ferriprox, kelfer)

I have homework for all members: read the leaflet very good and tell me of they wrote something about 'not crushing the pills' ?

The reason you will see different inserts with the meds is that there are different requirements in every country. Exjade is manufactured by Novartis and Asunra is manufactured by Novartis India. They are produced for different markets in different countries and each will have different info included, depending on the requirements of that country. For example, the information required in Canada is the most in depth for Exjade, and includes information not seen in other markets. This information can be seen in our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=1928.msg16165#msg16165

The Canadian information includes reports about deaths in Exjade users with prior kidney and liver disease. Any patient with a history of these diseases should be closely monitored while using Exjade.

The Canadian information includes reports about deaths in Exjade users with prior kidney and liver disease. Any patient with a history of these diseases should be closely monitored while using Exjade.

Reports about deaths due to renal or hepatic failure are included in our leaflet too,and that was the most scariest part,this gives a little comfort though,that those patients had prior kidney or liver damage present.

Zaini.

Thanks 

She'll take her first dose today.

Zaini.

Wishing you all the luck!!!!

Can I just comment on this too....

Before stopping Exjade, I used to  take it at 5pm, just as soon as I got home from work... My mum would put it in the cup and dissolve it for me with some room temp water...

I took it about 1 hr before dinner, cause taking it later at nite meant that I had to wait later to go to bed, so I asked if it can be taken before dinner and my heama said yes and so did my clinical nurse...

Get little Z to drink plenty of water and make sure that she is eating well...

I am the only patient here in sydney that I know of that it didnt agree with me... Maybe cause of what my body has been through and didnt have a proper break from me being sick last august/sept. Not sure... But I did give it a go...

I hope this helps and keep us posted..

With love and