Splitting exjade dose

Hello friends,

Just thought to share this experience with you, Littlie Miss A as already most of you know is suffering with extreme nausea and vomiting to an extent that she cannot even tolerate the smell of food. The lack of food has drained her energy to a level where she is simply not active anymore.

Well, the doctor has asked us to split the exjade dose 125mg in the morning and 250 mg at night. We are advised to stop exjade for one week before starting with the split dose. The doctors do have concerns with her weight (currently 19.2Kg or 40lbs only) and have asked to give her energy drinks to start with.

As most of you know, how picky eater she is, we are still trying to find a energy drink like 'pediasure' that she would take.

Dear Canadian Family,

I am sorry to hear that Lil Miss A is not able to eat.  I hope that this issue is resolved very soon as she needs energy to grow and thrive.

We went through a very similar situation for a few months.  We went to Hawaii for a vacation in November.  During the second or third day of our vacation lil A told us that he did not have an appetite.  We thought that it would resolve quickly as he usually eats very well - when on vacation he is always asking for snacks or looking for restaurants that he would like to dine at. 

Beginning that day, lil A had no appetite for our entire vacation and on the flight home he was in excruciating pain.  We took him straight to the hospital on our return.  Nothing was found, but his lack of appetite and nausea continue for nearly 3 months.  He continued to play hockey and remain active but he did not want to eat anything.  The thought of food would make him feel sick.  He was extremely irritable and did not want to attend any social events that involved food.  We discontinued exjade for a week at a time on two different occasions.  We took away all supplements for two months but the problem persisted.  An ultrasound revealed enlarged glands and it seems that he had a viral parasite in his stomach causing the enlarged glands and swelling of his intestines causing him to feel bloated and 'full' all of the time.  The doctor gave him *Florastor for 3 days, and within a few days he started eating yogurt and fruit.  A week from then he started to eat like before, his appetite returned and we are on our way to getting better.  I would say that he is now 95% better than he was before.  He still has aversions to certain foods but on the whole he is gaining his weight back and improving. 

During the time that he was unwell I kept his nutrition up with grapes, whole wheat crackers and small amounts of anything that he found appetizing.  I also let him have mandarine oranges once in a while.  Small amounts of Vitamin Water each day also kept his energy up during that time.  He continued to be active, but the doctor said that he enjoyed being active because when he was active the blood flow was all over his body and kept the pain away.

Best of luck with lil Miss A Canadian family, I hope that everything is resolved and all better soon.  We also learned to make sure that lil A eats something within half an hour of having exjade - always - and this has reduced any exjade related irritability in his stomach. 

Please keep us posted,

Sharmin

Canadian Family.

I am sorry to hear about Little Miss A,i hope the issue would resolve soon,and she'll be back to normal  .

Zaini.

Thanks Zaini and Sharmin,

An ultrasound looks like a good idea if things do not get better.

Regards

CF,

I will be very interested in knowing about any changes in little miss A"s appetite during her week off of Exjade. Some of the older thals I know in the US had to quit Exjade due to the never ending nausea. Fortunately, they were able to switch to Ferriprox under the compassion program.

Also, if anyone has experimented with taking Exjade with food instead of on an empty stomach, can we get some feedback on the nausea issue? We need to know if taking with meals reduces this problem.

In the end, I think what we see here is why we need a better choice in chelators. In my opinion, starch desferal has the most potential of any chelator in development, and is one of two drugs of interest in development for thalassemia that really deserves funding, with the other being the HbF inducer that Dr Susan Perrine has worked on for over 20 years. Underfunding is a serious issue, and needs to be more significantly addressed by the thal organizations and establishment.

Also, if anyone has experimented with taking Exjade with food instead of on an empty stomach, can we get some feedback on the nausea issue? We need to know if taking with meals reduces this problem.

Hi Andy,

Thanks for your feedback, we had experimented exjade with food. Infact, little miss A will only take exjade after 1 hour of food and not in an empty stomach. Our observation is that this helps temporarily and the nausea comes back. Lots of patients in HSC are taking exjade with food but most of them have stomach problems like diarrhea, bloating etc. It would be nice if other members can also share their experience.

This poor chap I know in HSC is facing severe diarrhea and nothing is helping him.

You had hit the nail about under funding, sometimes people ask me about the cure of thalassemia and I tell them 'if we can stop the worldwide wars for only one day and the money saved is invested in finding the cure of thalassemia than there will be millions lives saved'.

Hi Canadian_Family,

Sorry to hear about Little Miss A's stomach trouble. How is she doing now? Did the ultrasound shed some light?

ABout splitting Exjade, in Boston, I know few children here who have their exjade doses split up into two. They have been taking it like that for more than a year. Jen explained that to me in lay man's term as their ferritin was not going down as much as their body was processing the exjade faster and it was not giving exactly 24X7 chelation. One of the kid now had ferritin below 1000.

Hope you can get the nausea under control for Little Miss A. Good luck !

Thanks Bostonian

Well the ultrasound came okay and we are happy to report that after one exjade free week, little miss A is eating again. She had her meatballs today and did not complained at all. It is quiet established now that exjade is causing the nausea problem. We hope splitting can resolve the issue.

Little Miss A is very responsive to exjade, even at only 375mg, her ferritin comes down very quickly. The next big question is what would be the impact on her ferritin after splitting the exjade dose and whether splitting resolves the nausea problem. Stay tuned.

Canadian Family,

I am glad to hear that the ultrasound was fine and that lil Miss A is eating again.  I hope that splitting the dose will get rid of her nausea - and be even more effective in keeping her ferritin levels low. 

Best of luck and please keep us posted,

Sending my love to the little Princess A,

Sharmin

Glad to hear that everything is turning out fine,must be a relief to know that ultrasound was normal,i hope splitting of dose would solve the issue for both Little Miss A and Little Z .

Zaini.