Side effects (ExJade)

Hi all,
This is my first massege at all, I would like to introduce my self, my name is emad from State of Kuwait. and I am 37 years old Thal. Major Patient.
could anyone give me more details about the side effects of  Exjade? and is it suitable with older age patients?

thank you.

Hello Emad,
to the site! Feel free to ask more question that you have in mind and do tell us more about yourself.

Exjade is mostly recommended for patients above 6 years of age.

Most of the patients don't suffer from serious side effects. Some patients may experience temporary rash or upset stomach problem, but that goes away with time by lowering the dose and then eventually bringing it up back slowly.

However your serum creatinine should be monitored regularly with the use of Exjade and it should be stopped if the level increases with time. Similarly patients with renal problems should avoid it or use it with their doctor's advice and supervision.

Hi,
Welcome,i am on exjade and so far have only had a few minor side effects.I have had diahorrea
(sorry to go into detail!) and that was only after taking it for 3 weeks in the beginning,but it was only for a couple of days then went away.I also had minor headache which sometimes comes & goes but is handleable.I think if you can put up with this few minor side effects it beats having painfull needles each night.I know though another side effect is a skin rash (which i didnt have) so other patients on here maybe able to shed some more info for you.Good Luck with the exjade,keep up updated on your progress.

Hey elturkait,
Since its relatively new on the market, i am not sure if anyone can truly say what the side effects are. I guess that it will be a learning experience for all of us based on the feedback seen here. Some of my friends using it have said that they ferritin levels have actually gone up so far, but I guess that its early days yet.
good luck though

Hello Emad,

Welcome to the forum,I don't know much about Exjade, as my daughter is on a combination therapy of Desferal and Ferriprox (L1).Do tell us more about yourself,I hope you would find this forum very helpful.

ZAINI.

Hi everybody,

Actually, i send my 1st massege before start the exjade treatment, and with this 2nd massage i am already on exjade Low dose  (2 tablet /1000 mg daily/ and my weight is 57 Kg) with non-use a desferoxamine (Desferal) for 2 weeks till now.
My ferritine level was 927 before started treatment, but i dont know what happend with it after next few weeks.
my total health situation is very good, but  i am woried about the next step when my Doctor start to increase my dose (it could be 1500 mg daily).
but i have one question i need the answer for it, ...iron chelation.
which is more effect ? , desferal or exjade?

Thanks for all,

Hi Elturkait!
     WELCOME! hope you find all your questions, answered. To answer your question which is more effective i think they both are working great, same effect and same intensity, but so far desferal has few side effects than the exjade, in my own opinion, i've been using  desferal since I was just a child and so far the only side effect i can tell it's painful from the needle and from the bump you will have after the pump has been removed. now that i have turned 30 i'm using combination therapy with desferal and exjade, and like Sydney said i have been experiencing the same things as she had, and just realizing that these are brought about taking exjade....... but i think this is just minor rather than the effects of not having chelation at all........ especially now that i'm having problems again with my liver......by the way i'm just taking 500 mg of exjade every other day...

Hi Lyanne,

Your comment is news to me as i had heard previously that the exjade had to be used by itself and  should not be combined with any other chelator. the only two allowed for combination (done in the UK with good results) is desferal and ferriprox.

Has anyone else been told this?

حياك الله welcome to your seconde familly
        Dear Emad am a father of a child who was thalassemia major and i did for him an BMT..I am also from state of kuwait and still treat my son in SABAH HOSPITAL .
         I have a good news for you and all the thalassimic PpL in state of kuwait ,, Professor Lucaralli he will visite Kuwait in 24th november i don't know how long he will stay in kuwait but am going to take my son and my doughter to meet him in the airport i wish i see you to talk more and also you can ask Dr Hisham in Sabah hospital (NBK) a bout the Exjade ..
 
 PS: MY PHONE NUMBER 9026225
                                        khalifa
                                  state of kuwait
                            one for all and all for one 

Good to have you with us! I have been on Exjade since last January. My ferritin levels had not changed much from what they were on Desferal. but I have only been on 1000 mg. of Exjade all this time. I was finally put up to 1500 mg. just recently, and my ferritin level has dropped to 2300, lower than it has been in 3 years. I also started using a plastic spoon to stir it.

Exjade is good for older people - I am 56. I had a little difficulty getting used to it at first, but I am fine with it now. I just felt like my whole body was down, and like I had the flu. I was nauseated. That eventually went away, and I don't really feel any side effects now. When I recently added the third pill, I started to feel the side effects again, so I went back to 2 pills until I had a transfusion, and just generally felt better. Then I added the third pill again, and I haven't had any trouble. I am really excited to get my ferritin level down lower.

It's good to meet you. Good luck with Exjade, and I hope things go well for you. Jean

  Hi B thal girl,

        No one told me that it should be combined with desferal, why is this bad? is there any bad side effect when you take exjade while still using desferal? i'm worried.....    , but my hema did prescribed 3x a week of exjade and 2x a week of desferal....

To Lyanne,
In regards to your question about using desferal & exjade togther,there has not
been enough study to see what effects it has using both togther,but i know
Danielle (and you can ask her) takes both togther,but most doctors are against this.
so i have been taking exjade on its own and so far exjade has worked for me.

To Lyanne,
Sorry if i scared you but from all the forums/ information seen so far it seems that exjade should be taken on its on. I am on combination but with ferriprox. Maybe its okay for you but I just wanted to know if things had changed and they didnt publish it.

so maybe andy or danielle can help?

Hi welcome to the forum I'm from kuwait ow saba7 hospital too and yes i highly recomend that u talk to DR.Hisham about exjade

and actually im still suffering from side effects of exjade like fever and vometing :S
I've been on it for 4 months now

   Hi! B thal girl and sydneygirl,

           Sorry for the late reply I was hospitalized due to infection which leads to lowering my hg and I was needed to be blood transfused again, 2 units and stayed in the hospital for antibiotic treatment. Anyway I'm doing great again tho i'm still under medication.I wanna thank you guys for anwering my question i just got shocked upon knowing the info, anyway is it really that bad taking exjade and desferal at same time?what if i use it alternately (this week exjade, next week desferal)
is it still not a good idea?
           Ei......... Andy what are your thoughts on this?