starting Exjade

Thank you Pratik.....thats why Lena always stresses never to stop chelating..

Thank you Pratik.....thats why Lena always stresses never to stop chelating..

Yes exactly. Keep it low dose, but never stop chelating!

It's a key to enlong your quality life.

-P.

Hi All,

Thanks a lot for sharing excellent information about Beta Thal.

My daughter is 3.5 years old her weight is 14.25 KG, her Ferritin is approx. 2200. Doctors tried Exjade last year but it didn't work for her as her LFT shoot up in two weeks. They stopped the Exjade immediately and after 10 months they have started again today just to see if she can cope up this time or not.

I am not sure is it good to start Exjade at this Ferritin level or not but my daughter is very relaxed to get the oral medicine.

She has been prescribed with 312.5 mg dose which I think its correct to start with. As recommended on forum we are going to split the dose and give her one in the morning and other half in the evening just to lessen the side effects.

I got a pill splitter to cut the medicine it dose have a small blade which I think it should not harm.

We are not sure what is best time to give the medicine i.e after meal or before 30-60 mins evening meal.

We are planning to give half dose in the morning which would after she is up from her bed and we are planning to give her empty stomach with no sugar orange juice.

Please advice what she should eat during Exjade, we really want that this time her LFT stays normal and she will be on Exjade.

Any replies would be really appreciated, Many Thanks

Wish you all good luck and good health.

Best Regards,
Atin Arora

Splitting the dose is a wise idea. Morning and Evening time is good. You can give Exjade after food (breakfast and Dinner), no harm in it. The dosage seems fine given her age, weight and ferritin level. Exjade can be mixed in water, orange juice etc. Do not use fizzy drinks.

There is no specific food requirement if you are taking exjade.

The one thing I will add is keep her well hydrated. It does make a difference in the liver scores.

Thanks a lot for your prompt replies, I will keep you posted on it.

Best Regards,
Atin

Hi All,

This just to let you know my daughter started Exjade with 312mg of dose and its been 2 weeks she is taking happlily.

LFT results are normal - which is good.
Serum creatinine is also fine.
Urine creatinine protien ratio shows high which is approx 60

Doctor wants to continue for this week and check the resuts next week. We are spliting the dose (morning / evening )

Please could you guide me how we can get Urine creatinine ratio down? Trying to keep her hydrated.

Many Thanks and wish you all a very healthy life.

Regards,
Atin

Atin,

It may just be because the drug is new to her, but continue to concentrate on hydration, and make sure she is well hydrated when she is tested.

Thanks Andy,

I thought to let you know about this week results.

My daughter (Aadvika) was well hydrated at the time of test so Urine creatinine protien ratio came normal.

Serum Creatinine was also normal. Thanks for the advice.

Her LFT gone up this time any suggestions to bring it normal. It's the first time she will go for 4 week test and we really want the results to be normal so that she can continue to next one month.

Really appreciate for your reply.

Many Thanks,

Atin Arora

LFT's will rise with activity during the day, so get tested early in the day. Continue to keep her well hydrated and I encourage the use of liver friendly herbs like turmeric and nigella in cooking.

Thanks Andy for the suggestion.

Her test gets done first thing in the morning , We will use more Turmeric in cooking and add Nigella.

Much Appreciated again, lets keep our fingers crossed.

Hi Andy,

Her LFT is gone up little bit again

ALT = 116
AST = 82

Please suggest is it ok to use Turmeric, Nigella seeds and Milk Thistle

2 times Turmeric + Nigella seeds with Honey
1 tab of Milk Thistle with food.

You reply will be highly appreciated. Many Thanks

May god give you all a health life.

Best Regards,
Atin

Yes, do try the herbs and see if they help.

I would definitely try Milk Thistle. I've been taking it with good Exjade doses (splitting it) and fortunately, my ALT/AST levels are staying around 40. Hope it will be same for your little one.

Best,

-P.

Thanks Andy, Pratik,

Much appreciated for your response.

Last week results were ALT 191 and AST 125, I immediately introduced 1 tab of Milk Thistle each day for 1 week and today her LFT results shown good results.

This week her ALT is 100 and AST 60 which is down approx by 50%. I am sure its because of Milk Thistle. Thanks to you all members for great research on herbs.

Please advise shall I continue giving her Mile Thistle, doctors are questioning if Milk Thistle is supressing EXJADE effect on Iron chelation? ALso she is just 3.5 years old , its ok to give her Milk Thistle at this age whereas its written on capsule not to be given under 18 years old.

Thanks all for great information and I wish for everyone great health.

Best Regards,
Atin