starting Exjade

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Offline zahra

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Re: starting Exjade
« Reply #15 on: May 14, 2010, 07:13:17 AM »
Hi all,
Today is the 8th day.I got the 125mg exjade on day 6 so have been giving that in evenings so its a split dose albeit unequal. Still taking 250mg in mornings. I just wanted to mention that the stool colour changed on day 4 so it seems the exjade is working now. Day 4 is also the only day my son has had stomach discomfort and vomited, after that he has been ok. The doctor had said the skin rash usually appears b/w day 10 and 15 and goes away in 15 more days without leaving any scars and without discontinuing exjade and that is the most common side effect. I hope he doesnt get it .Lets see how things go on from here.
Zahra

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Offline Manal

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Re: starting Exjade
« Reply #16 on: May 15, 2010, 01:07:00 AM »
Thanks Zahra for the update, best of luck

manal

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Offline Zaini

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Re: starting Exjade
« Reply #17 on: May 17, 2010, 04:20:43 AM »
Best of luck Zahra :thumbsup

I hope your little one won't experience any skin rash,Lil Z never had any such problem Alhumdulillah.

Zaini.
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Offline Sharmin

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Re: starting Exjade
« Reply #18 on: May 17, 2010, 02:58:19 PM »
Best of luck Zahra,

Sharmin
Sharmin

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Offline joanne

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Re: starting Exjade
« Reply #19 on: May 22, 2010, 02:26:43 AM »
Hi everyone..I have THAL intermedia but don't transfuse...

I had an MRI done on my liver at the Toronto General Hospital by Dr Ward and he has advised me that my iron in my liver is 14.5

I will be starting Exjade and feel very nervous..Can I maybe get some feedback on Exjade??





Sincerely



Joanne
 ps why can I not use metal  cuttlery?

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #20 on: May 22, 2010, 02:42:51 AM »
Hi Joanne,

The metal cutlery is just a precaution. It was believed that since Exjade chelates iron, that it could react to the iron in cutlery or containers, thereby reducing the effect of the drug. There is no danger. It's advised in the hope that avoiding metal means the drug will give you its full potential.

Regardless of what the doctor advises, start Exjade on a low dose of 1/3 to 1/2 the required dose. This gives your body a chance to get used to the drug. Novartis advises 2/3 dose for starters, but my observation has been that patients do better when they slowly build the dose over a 2-3 week period.

Your liver iron does need to be addressed. Has your heart been checked with the T2* test?
Andy

All we are saying is give thals a chance.

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Offline joanne

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Re: starting Exjade
« Reply #21 on: May 22, 2010, 04:11:15 AM »
Thanks Andy...yes and all was fine with my heart...what do you mean my liver needs to be addressed? isnt that why Im going on Exjade?

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #22 on: May 22, 2010, 02:44:50 PM »
Yes, Joanne, that is why you've been prescribed Exjade. When I respond to a post, I try to respond so that anyone else reading it can also benefit. It may be stating the obvious, but I do try to make use of every teachable moment. With intermedia, many people are not aware that iron overload can occur, even when not transfusing. Of course, this is the direct result of excess iron absorption from the diet, which is why a low iron diet is often recommended, along with drinking tea with meals, as it helps to inhibit iron absorption. Foods rich in vitamin C, such as citrus, should be avoided with meals, because they increase iron absorption. As far as the liver iron level, your doctor probably already explained this, but this level should be lower than 7 and the lower the better. You may already be aware of all of this, but I do try to answer so that many people can benefit.

One more tip about Exjade that I want to pass on, is that many people have had problems with nausea, so in the past year, quite a few people have tried splitting the dose and taking half in the morning and half in the evening. This does seem to decrease the nausea, so if this becomes a problem for you, it's something to consider.
Andy

All we are saying is give thals a chance.

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Offline joanne

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Re: starting Exjade
« Reply #23 on: May 22, 2010, 08:54:46 PM »
thank you for your wonderful advice Andy!!! :)

Will any tea do?

I am very worried because I have a 5 year old son..so I am worried about something happening to me...do you think the Exjade will help remove the iron?


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Offline Andy Battaglia

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Re: starting Exjade
« Reply #24 on: May 22, 2010, 09:27:24 PM »
Hi Joanne,

Yes, Exjade is good at removing liver iron. If your heart iron was also a problem, I might suggest some desferal, also but like many with intermedia, your liver was first to get the iron load. Exjade should work fine. I was curious about something. I have often read that non-transfusing intermedias can get iron build up in their organs that is not reflected in their ferritin levels (the ferritin level will look OK but the organ iron may be high). Did you have any ferritin tests and if so, what was your level? This info is helpful when advising others with your condition.

And yes, any tea will do and milk is also something of an iron absorption inhibitor, so adding milk is also fine. Vitamin C supplements should be kept low and citrus is OK to take between meals. If you have any questions about what foods to minimize, let us know.

And we all want to see you around to take care of your son, also, so feel free to ask anything. One bit of info that would help is do you still have your spleen?
Andy

All we are saying is give thals a chance.

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Offline joanne

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Re: starting Exjade
« Reply #25 on: May 22, 2010, 10:45:16 PM »
Andy, I dont remember my ferritin level but I know its very low...I will get the numbers and post them!


Thanks for your help!

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Offline Manal

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Re: starting Exjade
« Reply #26 on: June 02, 2010, 01:43:23 AM »
Andy,

I remember from last year conference that i copied the findings that were investigated in a study that discussed LIC in thal intermedia. You can check the numbers below

http://www.thalassemiapatientsandfriends.com/index.php?topic=2863.0

Quote
* Unreliable readings of ferritin in Thal intermedia were also discussed and how same ferritin has a different LIC in thal major and thal intermedia patients. I was able to copy the readings and you will find a great difference in the LIC range

Ferritin                         LIC mgFe/dry weight TM         LIC mgFe/dry weight TI
500                                       2.7                                 5.8
1000                                     5.4                                    11.6
1500                                       8.2                                 17.4
2000                                       10.9                                 23.2

These numbers really shows that we never depend on serum ferritin in TI for detecting iron overload

Also increased LIC is correlated with PHT in thal intermedia patients

manal

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Offline zahra

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Re: starting Exjade
« Reply #27 on: June 03, 2010, 11:12:35 AM »
Hi everybody,
Its now almost a month on exjade for my son. the first week was 20mg/kg and then 30mg/kg. This was taken in an uneven split dose of 250 mg in the morning and 125 after the afternoon nap. Ferritin at three weeks had gone down just a little ( as expected) from 912 to 896. My son does have tummy aches sometimes , especially after the morning dose and has vomited twice. I have noticed that this doesnt happen if I suceed in putting him back to sleep after giving him the medicine as advised in a post here. The doctor prescribed zofran.......I haven't given him it. Putting him back to sleep must have less potential side effects .:) I do wonder however if I should be concerned about any damage to his stomach ,like the doctor hinted at possible ulcers. I mean does a mild transient tummy ache and occcasional vomiting really indicate that? and if so what should I be watching out for and how is it preventable?
Thanks for listening
Zahra

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Offline Zaini

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Re: starting Exjade
« Reply #28 on: June 03, 2010, 02:27:09 PM »
Zahra,

I can't say anything for sure,but i can share my experience,its been more then a year my daughter started exjade,and she does have tummy ache often,and very rarely she throws up too,but in last summer we did her annual ultrasounds and everything was ok Alhumdulillah,and we are due for another annual round of tests and ultrasounds,other then that our doctor never showed any concern about occasional tummy ache being something serious.So i hope there is nothing harmful in these occasional tummy aches,as they are very common side effects of exjade.

Zaini.
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Offline joanne

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Re: starting Exjade
« Reply #29 on: June 09, 2010, 12:56:01 AM »
Hi everyone..just wanted to let everyone know I started Exjade and so far so good...I also started Vitamin E tonight :)

 

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