Wish us luck !!

Hi,

We are going to start Asunra for our daughter in a couple of days hopefully,i have so many concerns regarding this drug,i have a few questions to ask.

I think i should start her on the lowest dose first,i.e 20mg/kg,and after how long should i switch to the full dose of 30mg/kg,if she tolerates the low dose well.

I know Asunra has to be taken on empty stomach,but morning doesn't seem like very ideal time,because a short while after taking Asunra she'll leave for school,and then she gets off at 4 PM,so she'll be away for almost half day and i'd be worried sick if there is any thing wrong with her,i am planning to give it to her when she gets off from school,at 4 PM ,she takes her lunch in school at 1PM,so her stomach must be empty,is that alright?At the same time i used to give her IP6,should i continue it or change the timing for IP6?

Her hemo has asked me to test het creatinine levels,and SGPT before starting Asunra,my question is once she starts Asunra,how frequently should we be checking her creatinine levels? Every 15 days? Every month? Or every three months? Are there any other counts or levels to be monitored while on Asunra?

What side effects should i keep watch for? Rashes i know about,what else?

Her ferritin checked on 2nd jan was 1409,unfortunately it has increased from 1259,i don't know if it was a little bit of cold she had at the time of test or something else,our pump wasn't working  very well either.

I know how important water is,as she spends most of her day in school,i am going to ask her teacher to make her take a sip every half an hour.

Any thing else i miss? please remind me,i hope Asunra will work well for us,Little Z herself is very eager to start Asunra as it would mean no pump .

Wish us luck,and thanks in advance for your replies.

Zaini.

Zaini,

Best of luck my dear   

We give my son exjade at 6am and then we let him sleep until 7am.  When he wakes up he has breakfast and I make sure he has a lot of fluid before going to school.  We urge him to drink water at school and resume giving him water when he gets home at 4pm. 

A few points to remember - do not use metal or clay cups and utensils while mixing exjade - we use a plastic cup and a plastic knife to mix it.  I usually break the pill into tiny pieces, put in just a drop of juice and crush the pill against the sides of the cup with the plastic knife.  Then I add the rest of the juice and mix it really well and have him drink it right away.  I put in a little more juice if there is any residue left in the cup.  He drinks this and falls asleep again. 

Little A started taking 500mg (20mg/kg) of Exjade on July 30th.  His dose was increased to 625mg on October 12th.  It could have been possible for his dose to be increased sooner but we picked up the higher dose when my husband and I went to Oakland in October and started it then. 

We were told to watch for a rash, little A luckily did not experience this symptom.  He did however have a lot of nausea for the first few weeks but we do not know if this was because of some of the other treatments he had this summer or if it was exjade alone.  At the time we were giving him exjade after he woke up - to alleviate this we began giving him exjade at 6am so that he could sleep for a while after taking it.  Little A was actually on summer holidays when we began giving him exjade so we were able to watch him at home for a month before he began going to school. 

Little A took his first dose of exjade at the clinic in Oakland - he was asked to not eat anything that morning - he was given a blood test before taking his first dose.  They gave him his first dose and then took another blood 1 hour after giving him his first dose of exjade.  These blood samples were looked at there and some were sent to Dr. Weatherall in the UK.  I imagine that  the purpose of these tests was related to their study. 

Since this time, little A has a blood and urine test every 3 weeks.  The following things are tested for each time:
CBC
Urine Protein
Urine Creatinine

Metabolic Panel including the following:
Sodium
Potassium 
Chloride 
CO2 
Calcium
Glucose
BUN
Creatinine
Total Protein
Albumin
Bilirubin
SGOT / AST
SGOT / ALT
Alkaline Phosphatase
Ferritin

As for the water just have her drink it whenever you remember, every sip makes a difference.  As you know, there may be a spike in her SF for a while.  I wonder if this may not happen too much for Little Z because she has been on L1/desferal combination for a while so she may have less iron in her organs compared to other thal patients. 

She may have some tummy ache for the first few weeks and she may lose her apetite for a while - but she will be okay after the first little while.  We don't notice any other side effects in Little A - other than the unbelievable change in his skin color.  IP6 had caused some skin color change - but exjade - OMG!!  I have emailed you before and after pictures. 

If I think of anything else I will let you know.  Feel free to ask me any questions that you may have - you can PM me, email me and even call me - anytime. 

I hope that everything goes very very well for little Z.  I am also glad that she will have no more needles.  I hope that she has no side effects and her iron levels drop quickly.  God bless our little angel. 



Sharmin

Hi Zaini
Wish u all the luck with Asunra. Sharmin has explained almost every little detail. In any case you will receive the type of tests  and their frequency along with your prescription of Asunra. Asunra is best given on an empty stomach first thing in the morning. If you find this difficult you could give it at night three hours after dinner and see that she doesn`t eat anything afterwords. Don`t worry. Hassan did not experience any of the minor side effect also Alhumdulillah.

Sharmin, Why do you break the pill into pieces They dissolve in minutes. Actually clear instructions are given along with Asunra that you shouldn`t chew, cut or break the tablet and one has to calculate their dose to the nearest whole tablet.

Another info Zaini
In India, when you buy three boxes of Asunra you get one box absolutely free. Do ask about it.
maha

Hi Zaini,

The official instructions for Exjade are, " Recommended initial daily dose is 20 mg/kg body weight, taken on an
empty stomach at least 30 minutes before food."  It doesn't say it has to be morning. Morning is when people have an empty stomach but other times can work. Ambareen switched to night time to relieve the nausea she got. Each person is different, so find the method that works for her and best of luck to little Z.

Hi zaini ,
its nice to hear that she is now going to start asunra , may asunra will play a big role to controle her ferritin and keep controled her ferritin in normal ranges ... best regards for you and litlle Z .
And a Message for Little Sis :
Hi Little-Z ,
Wish you all the best of luck for Asunra , i hope, wish n pray that you tolerate with Asunra 100% completely and no side-effect will come in your way to asunra ..  i m happy to hear that you will never face the needles again for Desferal and that is wat most comforting and satisfying thing for your Bhayya Umair , hope that you will do way better with asunra than the desferal ... please be regular with your medicines and take your medicines on time ... Take good Care of your self as your mama is doing but it will be more happy moment for me when i will hear that now you are taking care of your self with your own effort.... Best regards, wishes and wish better than the Best of Luck ( means = best for everything in life ) ....

Take care
Umair

 Hi Zaini! goodluck! I hope it goes well ! 

Zaini, Best of Luck to you and Little Zainab....

My daughter's hemo says that most people are tolerating Exjade well. so I am sure Zainab will be fine.

- Bostonian

Sharmin, Why do you break the pill into pieces  They dissolve in minutes. Actually clear instructions are given along with Asunra that you shouldn`t chew, cut or break the tablet and one has to calculate their dose to the nearest whole tablet.

Hi Maha,

I have been breaking the pill into pieces so that it would dissolve faster.  I thought that the concern was to not have the patient  chew the pill in the mouths, and to use the entire pill.  (The pills here come in 500mg and 125mg that I have seen).  I had spoken with our doctor in Oakland and he had felt that it was okay to break it into pieces before dissolving it - but thank you for brining it to my attention I will ask the technicians and perhaps they can check with Novartis (who is running this trial).  I will let all of you know their response.  Thanks again for bringing this to my attention.  

I am glad to hear that Hassan is doing well with Exjade



Little Z,

May everything go very well for you!!

Love,
Sharmin

Thanks Sharmin,Maha,Andy,Umair and Lyanne,

Your replies were really helpful.

Little Z weighs 27 kg,so her initial dose should be 540 mg,but for some reason her hemo gave us the prescription of 400 mg   i intend to start with 500 mg,but Novartis sales person said he'll give us the medicine as prescribed,means a box of 400 mg tabs,he said if you want to give 500 mg then give a quarter piece of a tab along with a whole tab,but we can't give you anything other then prescription,getting a new prescription from her hemo is a new headache,so i think i'll go with his advice.

I only knew about creatinine levels to be monitored, CBC we do at every transfusion,which is more or less every 3 or 4 weeks,all other tests you mentioned,should i get them checked every three weeks? which one of them you think are MOST important?

  As you know, there may be a spike in her SF for a while.  I wonder if this may not happen too much for Little Z because she has been on L1/desferal combination for a while so she may have less iron in her organs compared to other thal patients.  

I hope this would be the case,because elevated SF levels are scary,although we know they come down eventually.

As for time, right now i am going to start in evening,because she'll be at home after that,so i'll be able to keep an eye on anything she complains about.But please tell me what should i do with IP6? Is it ok to give it with Asunra or should i change the time?

Sharmin, Why do you break the pill into pieces  They dissolve in minutes. Actually clear instructions are given along with Asunra that you shouldn`t chew, cut or break the tablet and one has to calculate their dose to the nearest whole tablet.

Unfortunately for now,i'll have to do that,untill the first box ends,or either i'll have to stick to 400 mg,which won't be enough,what do you guys think?

In India, when you buy three boxes of Asunra you get one box absolutely free. Do ask about it.

I'll check this with Novartis.

Thanks Umair for your comforting and sweet message  .

Thanks everyone for your input,i'll definitely be needing more help and guidance in future.

Zaini.

Thanks a lot Bostonian I hope your little angel is doing fine  .

Zaini.

Hi Zaini,

This is the list of tests that the doctors in Oakland gave us.  I think that it should be okay to do them before every tranfusion when you have the cbc done. 

Give the IP6 at least 1/2 hour after exjade.  This morning little A received his Exjade at 6am and I gave him IP6 at 7am - and he will have breakfast at 7:30am.  I will give him another IP6 at 4pm and again at 9pm. 

I think that it is a good idea to give her the exjade in the evening for now so that you can watch her for the first few days.  That is a good idea with any medication.  I know that she will do very well


Best,

Sharmin

Zaini, wishing you all the best and i hope that it works good for our sweetie

manal

Manal.

Thanks for wishes,we need them.

Maha,

Can you tell me the price of Asunra in India?

Zaini.

Hello Zaini,

I thought I would give my two cents. My Daughter had a hard time taking Exjade in the morning, she was continuously nauseated throughout the morning and vomited in the class (They had to put the bucket right next to her). We were giving her Exjade one hour before the breakfast. After discussing with the doctor, we are now giving her Exjade two hours after the dinner just before sleep, this has actually helped the nausea and vomit problem. No matter what time you choose, please make sure the timing is consistent. One tip is to put the whole tablet in Juice (Apple or orange) atleast 20 minutes before consuming. We had found that eliminates the chalky texture of Exjade, and turn the mixture into a smooth liquid. Use glass or plastic utensils for preparing the Exjade.

We were also advised not give any other medication with Exjade, atleast two hours apart. I am not sure if supplements qualifies for that.

Watch for the color of feces (it may turn black/dark brown, which is a good sign).

Creatinine levels are checked monthly.

Drink 2L of water every day (as per doctor recommendation).

I don’t recall anything else, will update if it comes to me.

GOOD LUCK, I am sure Zainab will love to get rid of that ole’ stinking pump…. Bye Bye Pump.

First Sharmin,

They have never test:
Metabolic Panel including the following:
Sodium
Potassium
Chloride
CO2
Calcium
BUN
Total Protein (I am not sure about this)

They do not talk about this in the instruction leaflet, do they?

But the instruction leaflet says it isn't allowed to break the pills. Why do you break them?

How I do it:

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.
Ok, I do not know of that is allowed. But. it really works fast  If someone ever contact Novartis, ask them about this 
At the other side, my father came with this truc and he should know  it can or not, because his a chemist/physicst.

Today it was such day that I could not drink any tea after the 30 minutes and only one cup of tea in the hospital. When I was home I had a lot of cups of tea. Somehow you should manage it to let your daughter drink plenty enough of water. Mybelly hurts when I forgot that.

CF: I also think you should not take your supplement shortly after Exjade.

Also I believe that Exjade in the evening would be the best time for her. I think she can still feel nausea. I found out that I must to eat immediately after the first 30 min to avoid that. And I got some anti-nausea pills left from the heavy flu.

Bonne chance!!!

P.S. I do not remember the name, but there has been a new chelator which should come in trails in 2009. Suddenly they took it all back and they are back in one of the earlier stage of test. I try to say that they are still getting further with all the medical stuff.