Practical experince of taking Exjade with meals.

Our daughter is almost 2.5 years now and so far we are giving her Exjade with juice (mostly mango juice)on an empty stomach. We are very compliant, but AK does not like it and each day is a challenge. She constantly complains that her tummy hurts.
We are now planning to go to India for a month and I know that giving her Exjade there will be very challenging. Mostly because it is a family get-together and there will be 5 kids running around. We know by now that AK is more resistant to Exjade when there is company, even if we were to go in a different room.

Under the circumstances, my plan is to split the dose. Perhaps give her 125 mg with her juice in the morning and the rest mixed in soft foods like pudding/ice-cream/milk/curry etc. (we alternate 250mg one day and 325mg next day).

Now my question to the group is-
1) Does any one have practical experince of giving/taking exjade with meals especially milk products.
2) What kind of foods would you recommend.
3) Any other suggestion/advice.

Thanks

We have been giving exjade with food for a few years now and we are finding it to be much easier than it ever was on an empty stomach.  Mixing it with food has been very tricky for us - as it is very gritty and powdery so we have stuck with putting it in juice. We give him the exjade/juice with his meals and have him drink it 

We began splitting his dose a month ago - and in that time his ferritin went from 700 to 400.  We have not increased his dose since 2008 - we are quite sure that splitting the dose has increased the efficiency.

I think that splitting her dose will make the juice less gritty, not upset her stomach as much and it will be more effective.

Best of luck and enjoy your trip!!

Sharmin 

I love hearing these positive reports about splitting the dose. This method was developed right here by thalpal parents, but I am sure that Novartis is reluctant to change the recommendation because marketing controls the decision, and marketing thinks once a day is magical, when all anyone really wants is practical and effective.

Keep those reports coming.

Hi all
I have been giving asunra to my daughter after meals since 2 months she is 2.5 years old we are giving her 300 mg daily . 200 in the morning and 100 in the evening her latest ferritin is 1668 nd before 3 months it was 1880 so it really helps us .
Best regards

supergirl,
Our daughter's ferritin is around 600. My child takes exjade mixed with water. currently she takes 250 mg one time daily. To take the med, she bites into a chocolate piece (M&M, Lindt, Hersheys' or cadbury kind of  milk chocolates or chocolate covered nuts whatever she decides) and then sips into the water mixed with exjade. after that she takes another bite of chocolate/chocolate covered nut and finishes the med and then last bite of chocolate. she gereally gets 3 M&Ms or 1 piece of milk chocolate or 1 piece of nut. when her dose goes up, we split the dose and follow this procedure morning and evening (after coming back from school but before dinner). Earlier we used to wait for 1/2 hr before eating anything but in last 6 months, we did not follow that. SO far it has been working great. The only problem has been to find a chocolate that she is not bored off.

Best of luck...

Hello!

I'm determined to do it properly but I don't find the way. How many time do you have Exjade on Water? In my case, I take 3000mg and it takes at least 45 minutes to dissolve. This time is the one I can't find. I mean, I'm quite good at taking ferriprox but "waisting" time waiting for Exjade to dissolve is something I can't manage.

Do you think it would be possible to put Exjade with water hours before? I mean, maybe I could do it before going to sleep or before going to work so as when I wake up or come from work I just have to take it. It would be around 7-8 h. I used to do it with Desferal when I went to parties years ago and there was no problem but I don't know if it would be ok with Exjade.

I've done it a couple of times but I am not sure it keeps its effect on ferritine so I just do it sometimes when I go to hospital since I can't wake up so early.

About taking it with meals... I have done it a couple of times also but as I said I'm taking 3000mg so I drink a lot of water with Exjade and I need some time to be a little bit hungry after Exjade.

Kisses,

Laura.

Hi Laura,

I don't think that you should let the Exjade sit while it dissolves. You can stir it yourself to mix it up, and I just saw this on the Exjade site. I don't know if it's available everywhere, but it mixes Exjade in about 3 minutes.
http://www.us.exjade.com/patient/mixer.jsp

You can also use most liquids. It doesn't have to be water. You can also crush the tablets and mix them with soft foods. You can also divide the dose into two and take twice daily, once in the morning and once later in the day. This can make it easier to take and this method works well for chelation.

Thanks Andy!!!

Hello again!

I've just had a look at the mixer but I can't see the way to get one of those.

Should I ask for it to my doctor? I haven't been able to find how to get one on the web.

Thanks a lot,

Laura.

Yes, ask your doctor or your pharmacist.

Laura,
we use a plastic straw to break the tablet after putting it in water. When the tabs starts to disssovle, I just stir the med with the straw. My daughter uses the straw to drink it. so, you don't need anythign fancy....Just don't use anythign metallic....

 Andy's susggestion of splitting the dose is really good. We always do that whenever we go from 3 to 4 tabs each day - we use 2 tabs in the morning and 2 in the evening.

Hello again!

I've just had a look at the mixer but I can't see the way to get one of those.

Should I ask for it to my doctor? I haven't been able to find how to get one on the web.

Thanks a lot,

Laura.

When my specialty pharmacy was Medco Accredo, they sent me one of those mixers with the very first shipment.
Nicole

Do you think it would be possible to put Exjade with water hours before? I mean, maybe I could do it before going to sleep or before going to work so as when I wake up or come from work I just have to take it. It would be around 7-8 h. I used to do it with Desferal when I went to parties years ago and there was no problem but I don't know if it would be ok with Exjade.

Laura, Eileen Scott of Cooley's Anemia Foundation recently said that Exjade should be taken within about 30 minutes of being dissolved.
Can you drop it in the OJ/Water before you shower and get ready and then drink it before you leave for the day?
I drop it in the OJ about 30 minutes before I wake up my son, and then it's ready for him.
Nicole

Thanks everybody!

I'll keep you updated about my advances.

Hugs and kisses,

Laura

  Hi  Andy
            Kindly   guide   me  while  splitting  the  dose  of   asunra  how   to  take  in  morning  empty  stomach  or  after  breakfast  similarly  in  evening???
  Komal