Does anyone have any problems when taking Exjade?

I have been taking Exjade for about a year now, and I still find it really hard to take because I feel really sick once I've taken it and I sometimes am...    I feel terrible asking about this because I know that I am lucky to receive this medication and it is much better then having to have desferal all the time...but I was just curious if anyone has experienced anything similar...?
Best wishes to you all, take care!


~x~

Hi Stacey_Lou,

Are you following the instructions completely?

http://www.rxlist.com/exjade-drug.htm

HOW TO USE: Stir the tablet(s) into water, orange juice or apple juice until the tablets have completely broken apart and are well mixed into the liquid. If your dose is less than 1 gram, stir the tablets into about 1/2 cup (3.5 ounces) of liquid. If your dose is more than 1 gram, use about 1 cup (7 ounces) of liquid. Drink all of the mixture immediately, then add more liquid to the empty container and stir to get any drug that may remain. Drink all of this rinsing liquid immediately.

Take this medication on an empty stomach at least 30 minutes before food, usually once daily or as directed by your doctor. Do not chew the tablets or swallow them whole. Always mix this medication into liquid as directed.

Certain antacids that contain aluminum may decrease the amount of medication that your body can absorb. If you take an antacid, wait at least 2 hours after taking this medication.

Use this medication regularly in order to get the most benefit from it. Remember to use it at the same time each day. Dosage is based on your medical condition, body size and response to therapy.

SIDE EFFECTS: Nausea, vomiting, diarrhea, dizziness, headache, fever and abdominal pain may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. 

Nausea is a common side effect of Exjade, so this isn't unusual and isn't something to be worried about unless it gets severe. Do not use any metal container or utensil for mixing Exjade. Make sure you stay well hydrated also.

I would also like to hear from others who have experienced nausea while using Exjade and what they have done to deal with it.

Hi Stacey-Lou,

My son began taking Exjade at the end of July.  He started at 20mg/kg, in October he began taking the full dose 30mg/kg.  He also experienced nausea after taking exjade.  We mix it in orange juice and have him drink it immediately.  What seems to have helped is that we give it to him 1/2 hour before he has to wake up - so he sleeps for an hour after taking it.  This way he sleeps off the tummy ache and is able to eat when he wakes up.  He sometimes feels a little 'ichy' after he wakes up, but on the whole he feels much better now then he did initially.  Making sure that you drink a lot of water during the day will also be helpful. 

I hope this helps:)

Sharmin

I heard too that some take it after three hours from dinner and just before they sleep to avoid feeling any nausea, but i think this way goes better with adults as theycan control their food intake more than kids

manal

guys i am not in habit do drink water in excesses what are the adverse reaction if you do not take water with asunra aka exjade.
what is approximate quantity of water to be used in 24 hours

Can Exjade cause joint pain? Or is it still only caused by iron overload. Today and yesterday the pain is a way to worst. I cant do anything. sitting is driving me crazy too.

@ Ahmed ( AKA DJockey )
i know only 1adverse reaction of do not drinking much water  that is " Dehydration " , may other members will let you  know abt more adverse effects of drinking less water while taking exjade/asunra .........
every thal should take 6-8 glass of water daily , another thing abt water is , we feel thursty when we got dehydrated , so try to drinking water every hour will save your body from getting dehydrated ....

@ Dore
i dont knwo exjade caus joint pain but i know that iron could be a reason of  joint and bones pains ,

Best Regards
take CAre
Umair

Ahmed,

Not drinking enough water can effect your kidneys anyway,whether you are on exjade or not,but when you are on exjade ,as we have read so many times that it can effect your creatinine levels ( which represent kidney funtion),so it's better to take enough water to help your kidneys,Nothing is hard if you set your mind on it set reminders in your cell fone for every hour,and take a glass of water every hour.or at least half glass every hour.

Dore,

I am really sorry to hear about your joint pains,i don't know if exjade can effect joints,we have heard about Ferriprox  that it can cause joint pain,but i am not sure about exjade,between,how's your ferritin going?

Zaini.

Stacey!!!

I can relate to your sideffects from Exjade!!! As of 14/1/09 I have been told to stop taking Exjade due to the severe side effects I have been having from it... I have tolerated it for 4mths ever since I was out of hospital in October 08..

 My side effects were really bad diaorhhea and weight loss.. I have lost alot of weight and due to that my potassium levels were dropping... It wasnt worth me taking supplements were I was just losing too much fluids...

I am back on desferal again, my last option!!! I will see how things go with desferal again... Please every pray for me  . I am not looking forward to it...but its my last resort!!!!

I will try it for a month and see how it goes... will keep you all posted!!!!

Exjade was just too much for me..I went down to 500mg a day and still was sick on it...

I have lost a total of 12-14kgs and my size 8 clothes are getting big for me...And I am not a real tall person either...

All my blood works are normal too... except for the potassium which is low, but with time and tablets will be back to normal..

My ferritin is pretty good too..

Just letting you all know where I am up to...

Will keep you posted in due time..

Take care all
 

Theodora,

I am really sorry to hear that exjade is n't working for you,i know going back to desferal must be a little bit hard,but i know you are so strong,you can do it    you are an inspiration for all of us,looking at you i think that my daughter would be this old one day,inspite of what doctore told me about life expectancy in the beginning.

Stay strong ,we are here for you  .

Zaini.

Zaini!!!

Its doesnt bother me going back to desferal, would of been great if I could go on something else, but I have no choice... Its the fact that I have had some really bad reactions from the desferal in the past and hoping not to get them!!!!

I am tough, I dont let something like that stop me... Its part of life and I have to deal with it..No matter what!!!!!

I am not affraid of a little needle..I will see what happens and go with the flow...

I hope that some of my misfortunes help others make the right decisions!!!!  ( misfortunes )

Well I know what your going through as a parent, cause 40 yrs ago my mother was told the same thing about me, by a doctor... He told her just to not bother with me cause in 6mths time I would die...

I saw that doctor about 20yrs ago and I went up to him and said hello to him.. He didnt recognise me at first, but when I told him who I was... His jaw dropped and didnt have anything to say...

So no matter what anyone says when your child is born with Thal Major not to bother with them... They dont know what the hell they are talking about.. I proved them all wrong and so will
your little precious ones..

Thank you all for your encouragement and support...
 

Take care all
Theodora

Theodora,

I wish that exjade had worked well for you, especially in because desferal has given you a hard time in the past.  I know that you will continue to do very well - and I have complete faith in you.  As Zaini said, you are our inspiration my dear and I look up to you.  Our children have much to learn from you - and as people we all have a lot to learn from you. 

I am praying that things go well with desferal for you.  It is a good thing that more and more options are available for chelation these days, so that people can try them and determine what works best for them.  Hopefully starched desferal will also be an option one day. 

Good luck smurfette


Sharmin

Hi Teadora,

I feel very sorry for you.    I know how bad you can feel by taking Exjade. In the past I lost even my sight for 10 minutes, but it was very scary.. I have lost 7 kilo's since the the start of Exjade in September. It is ok. It is the weight I had before i started with high doses of ferriprox what let me feel hungry all the time.
This is my 3rd or 4th try with Exjade. I am now in the stage of headaches all the time. My dosage is at the moment 1125mg, but I am thinking of reduce the dosage to 1000. What was the highest dogase you tried?  Btw every 2 weeks I try take +125mg. Maybe I will try to take them after dinner and see of there's any difference.

Unfortunately, Exjade is my only option to get the ferritin down.

Zaini: My ferritin stays stable. It is still 2400. And my hgb was exactly the same as 1.5 weeks ago! It was 5.5 so that's 9.9 In this hospital it is impossible to let only your ferritin checked. So I will do that here in the local hospital 3days for my next transfusion. I hope I can make it to return to a montly transfusion scheme. And that is also better for the fe (when i stay at this dosage).

I prefer to think that my pain was caused by the iron. After the transfusion it became so terrible that I could only lay on the sofa. I did not take any painkillers. I have taken too much of them since September. I even succeed in sleeping the whole night with a hot water bottle.

In the past I had this pain only during or after transfusion. It seems that it was coincidence....

Good luck with desferal. Do you take it IV or.... ?

Best wishes from the Netherlands, Dore

p.s. Why this high ferritin? Because my child doctor undervalue this issue. I can not blame my parents. They trust that doctor; he was pretty famous. I can only blame him and hope that other patients dont experience this problem now.