starting Exjade

Hi,
My son will be two years old next month and we have been informed that he will be put on exjade at his next visit on the 6th of May which will be about 4 days before his birthday. His ferritin has been over 1000 for two months now. I have been fretting about all the possible side effects. I hope they arent a serious problem for him. I have been reading about how the ferritin goes up before it starts to come down in seriously iron overloaded patients. is it the same even when the ferritin isnt so high? When should I expect to see a decrease? Any tips on how to get a two year old to take it would be highly appreciated. Should I initially try a single dose or split dose? My doctor had initially okayed using the supplements and homeo meds until exjade and hydroxy urea are started. Is it ok to continue them? Even if the doctor disagrees? I think hydroxy urea will be started later so side effects can be judged seperately.
Wish us well.

Zahra

Hi Zahra
Start with a lower dose and build it up eventually to the required dose. My son Alhumdulillah hasn`t had any of the side effects other than an initial loss of apetite. I first gave his med with water but he puked, so I mix it with orange juice. After a few sips when he used to refuse to drink further I used to give him the same way I would give him antibiotics       ( 10ml medicine spoons).At the age of 2 my sons ferritin was over 2000 and 18 months of chelation later is still around the same figure. Everyone responds differently so only time would tell.

maha

Hi everyone,
My son started exjade four days ago. The first day was easy as he was really fascinated by the battery operated stirrer the doc gave him from an exjade starter kit. Day 2 the novelty wore off but he drank it. Day 3 he drank it so he could go out to drop his sister off at her bus stop. Day4 he refused to drink it. Since it was his birthday gave him one of his gifts on condition he drinks it.......still very reluctant , even though his sister mock raced with him to see who finishes the juice first. After an hour he only wanted to eat yogurt saying his tummy hurt. Vomited half way to his regular amount of yogurt . Went to sleep still complaining of tummy ache.
I know the leaflet says its a common side effect and just keep them hydrated but I cant help being concerned. I truly hope this will be temporary.
Interesting point is that his ferritin was 912 when starting . It had been 1234 and 1142( he had been sick so had jumped from 765 to 1234 in 4 weeks) the two months before. Doc said it will be more then 1000 in reality b/c he was transfused after the 912 sample was taken.
The doctor had recommended starting on 30mg/kg  which would be 375mg at weight of 12.6 kg. However the pharmacy had only the 250mg tablets and not the 125 ones so we have ended up starting on 250mg until the other ones become available so its already a lower dose.
Thanks for listening.
Zahra
PS: The doctor okayed the supplements and homeo meds so going to continue them

Hi Zahra,

I usually recommend a starting dose of no more than 1/2 of the needed dose and as low as 1/3. It takes a week or two to get more accustomed to the drug, especially with small children. Novartis recommends a starting dose of 20 mg/kg and not 30. We have found that an even lower dose works better when first beginning the drug. We have also recently begun to advise splitting the dose into two daily doses, as the result of the experience of several people who have tried this with their kids and found much less nausea. The whole dose is still taken but taken this lessens the stomach upset. It also gives a full 24 hour chelation, since Exjade has a half life of no more than 16 hours.

I would suggest starting again with a low dose split into twice daily. This is far preferable to quitting Exjade altogether. This has worked for many patients, and will likely help your son tolerate the drug better. Once he is used to it, you can raise the dose, but I would suggest to keep the dose split into twice daily.

Dear Andy,
Thank you for your prompt reply. I had asked the doctor about starting on a lower dose but he didnt agree. Sometimes it seems god helps and they didnt have the whole dose . The 250 mg they do have is about 20mg/kg and not 30mg/kg. The pharmacist says you have to throw away half the tablet if you split it to get the 375 mg recomended. That is prohibitively expensive. I didnt believe my ears when I found out the price. A nurse told me that this is nothing .They have one father who is paying Dh 40,000 a month for exjade b/c the childs ferritin is high. (weight high also?). Its insane! Anyway the doc then said to start at this dose and increase as it becomes available. I cant buy smaller doses by myself as Exjade is available only at this hospital in my city and only by prescription.
If the insurance company doesnt approve soon maybe I can get Asunra from Pakistan.
In the meantime I am thinking of giving it another shot tomorrow. Maybe it was just a one time thing. i havent missed a dose yet.If it repeats I will contact my doctor and get him to prescribe a smaller dose and agree to split dosing. One more question though. How long should he have not eaten to give the second dose of the day? Thanks again for all your invaluable help.
Zahra

Hello Zahra,
 
I hope your little one gets better at accepting his medicine. Keep trying.

I'm due to start exjade as soon as i hear back from the Dr., maybe even this week. I just wanted to remind everyone to not use metal utensils or metal containers to mix exjade. Also, when Andy mentioned splitting doses I thought about purchasing a pill splitter, because I normally cut pills in half with a knife. After researching I noticed some pill cutters use a thin blade to cut the pill, so just be aware of this also.

Take care of yourselves.

Zahra,

The updated Exjade prescribing information is attached to the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1928.msg16165#msg16165 

DOSAGE AND ADMINISTRATION-----------
• Recommended initial daily dose is 20 mg/kg body weight, taken on an
empty stomach at least 30 minutes before food.

30 mg has been shown to cause problems when starting and the prescribing info reflects this. However, in actual use, changes to the administration of Exjade come sooner. Dose splitting is a new idea but this has already reached the doctors and many doctors are now recommending this, especially where young patients are involved. At least one small study has recently been launched to see the effect of taking Exjade with meals, so we may see even more refinement of the instructions as time passes. Currently, the "take 30 minutes before a meal" instruction stands (but I would like to hear from anyone else who may have tried Exjade with meals or taken it with something other than water, apple juice or orange juice).

If you can get Asunra, it is the same drug and far cheaper.

I should add that Novartis does supply Exjade in different strengths, so physically splitting the pills may not be necessary. In the US, Exjade can be found in Tablets for oral suspension: 125 mg, 250 mg, 500 mg. Asunra is also available in various size tabs.

I am curious,

Zahra,

has the doctor even mentioned Ferriprox to you?


Lena.

Hi Andy,
it would be great if they could give exjade with foodas it will probably reduce stomach problems significantly. Exjade is available in different strengths here also (usually). Its just our luck that they ran out just now. They hope to have more of the 125mg ones in a day or two. I have read the information in the link and showed it to one of the junior doctors at the hospital. It made him really wary about being the one to introduce us to exjade . He even warned the doctor who did that i probably know alot and left quickly. ;) You guys are great!
Zahra

i splitt my dose in 2 and

take it with a meal....  panos

And I would like to add that Panos has had very good success lowering his iron load, so perhaps taking it with meals has no negative effect on the chelating ability of Exjade.

It has always been the patients who have discovered new ways to use their chelation. It has been the doctors and drug companies who have adopted these methods after proven by patients.

Hi Lena,
The doctor did mention ferriprox and desferral but prefers exjade. Perhaps this is b/c they are associated with the cleveland clinic and ferriprox isnt allowed in the US yet or b/c they are part of an exjade trial. Or maybe its just b/c its once a day.Just guessing.
The good news is that though I had to use a syringe to get the exjade down today (b/c of huge protests) there was no vomiting and no complaint of pain either. Hip hip hooray! Maybe its b/c he fell back asleep soon after drinking it??? I will try to put him back to sleep after exjade again tomorrow.
Thanks for asking
Zahra

Hi Bobby,
Can you please find out if it is ok to cut the pill in half. The pharmacist didnt seem to think so. She said you have to throw away what you dont use immediately. Maybe you can buy the pills at half the dose to split it up???
I know about not using metal utensils but am really curious about why the medicine is sold in metal foil blister packs???
Zahra

Zahra,


It is o.k to cut the pill into two and use half now and half later. I know for sure. In fact, I suggested,  in this forum,  splitting the dose in two, when my doctor suggested this to me stating it is better for 24 hour chelation. It seems lighter for the stomach,too. We have members in this site who adopted the dosage splitting and their kids accepted it better than the one dosage effect.
Pity your doctor does not prefer ferriprox as it is very good medication,too.

Good luck,
Lena.