Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: exiled2006 on February 20, 2006, 09:11:59 PM
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Hello everyone,
My name is Arthur. And I am new here. Danielle led me to this site. I have a question about the new drug Exjade. Is anyone on it and if so what has been your experience with it so far? I just started it on Feb. 11th. About ten days now. So far I have been able to tolerate 2 pills a day, but 3 pills has been no good. (bathroom wise). That's as much as you need to know. You can guess the rest. I have heard of rashes but that's it. Does anyone have any further info on Exjade??
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I'm so glad you're here, Arthur! Good to see you. :biggrin
We have a handful of Thals who are on Exjade right now, so I'm sure someone can help you. :happyyes
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Arthur:
Please see my post on the Poll: Which iron chelator do you use? thread. I have been on it for about seventy days now. I started with the same GI issues and stomach cramps. However, during the past two weeks I am pretty much back to normal. I am taking 1750 mg per day.
So much easier than Desferal therapy.
Barry
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She dissolves it in water, as the orange juice didnt work out. The tablets dissovle better and faster with water.
Hope this helps...
Shikha Mitra
Try this little trick that one kind nurse told me when I was too small to swallow a relatively big Vitamin C pill.
She put the pill on a spoon and took another spoon and crushed the pill to powder by the back side of the other spoon(as if you place one spoon in the other only with the pill in between them). Then she told me either to swallow the powder with some water or disslove it in juice etc.
I guess exjade will taste better in jucie than water. This will make it more palatable and no changes in the composition of medicine occurs as this is only a crushed form of the solid pill.
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You guys are lucky to have access to Exjade, In Canada we have same old politics and slow pace of approval going on. Health Canada is tightlipped and hospital denies any news. I think it will be year or so until we may have limited access for few patients.
Damn those needles!!!!
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Just to add to the conversation, I am now the proud owner and user of Exjade! I've been on it for about 2 or 3 weeks now and so far so good. I just had my ferritin done yesterday, and it's 1100, so it has gone down (not sure if it's the Exjade or the Desferal, though). I'm still on Desferal, but I'm being cut down a few days for now. Once my doctor sees that my ferritin is going down more, I think he will cut me off of the pump. I cannot wait for that day. I've been waiting 25 years for this drug, and I thank the Lord that I'm living today to see it and be able to use it. :biggrin
Canadian_Family, I'm so sorry to hear that you guys don't have access to Exjade over there yet, but please hang in there. The day will come sooner than you know. I've been waiting for so many years, and now I finally have it in my possession. I know your day will come as well. :hug
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Danielle,
Do you know of anyone else using both desferal and exjade? I've heard people say that you can't use them together although I don't know what the reason would be for that.
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My doctor has specific orders not to cease Desferal just yet. He wants to make sure that the Exjade is working before removing the DES, because if the Exjade isn't working, then my ferritin will go up. I asked him about taking them together, because I have read that you shouldn't, but he told me that it's completely safe for a limited time. I'm not going to be on the DES for much longer. Novartis says, and I quote, "Deferasirox (Exjade) should not be combined with other iron chelation therapies as the safety of such combinations has not been established" (http://www.drugtopics.com/drugtopics/data/articlestandard/drugtopics/052006/301812/article.pdf) but my hematologist has had experience with his patients being on both and told me not to worry. I think Novartis doesn't want patients being on both, because they are afraid of the ferritin dropping too low. I was told that they know a lot about the chemical compounds, but very little about Thalassemia, so if there isn't an issue with the chemical compounds of the drugs being combined, then I'm going to take my chances on listening to a hematologist who is very Thal-oriented. :dunno
I'll have to keep my fingers crossed on this one. I'm in uncharted territories now. :rotfl
I also need to add that this doctor isn't the doctor that I've been complaining about. I have found a new hematologist who specializes in Thal, who is absolutely wonderful, and has been taking care of me very well the past month. I'm very happy with him, and I'm finally getting the care that I need. That's something that I've never had in my life.
So anyway, if something should happen to me, I'll leave a note for someone to tell you guys that DES and Exjade should definitely NOT be combined. :rotfl :wink
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I think the main reason doctors are reluctant to use Exjade along with another chelator is because Exjade hasn't been tested with other chelators yet. As always Danielle, you get to be the guinea pig.
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I think the main reason doctors are reluctant to use Exjade along with another chelator is because Exjade hasn't been tested with other chelators yet. As always Danielle, you get to be the guinea pig.
I agree, Andy. I think that is the main reason. Unfortunately, I think most of us are considered guinea pigs. Especially the older crowd, because Thalassemia is only becoming more widely known now. When many of us were little, even Desferal was considered "venturing into the unknown." :happyyes
All I know is that I've been waiting for an oral chelator since I was 5 years old, and if I have the chance to finally see what it's like to not have to worry about that painful pump every night of my life, I'm going to try it. I cannot say what it's going to do to me, but whatever happens, I'm sure they will use the knowledge to help others in the future. :dunno
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I also need to add that this doctor isn't the doctor that I've been complaining about. I have found a new hematologist who specializes in Thal, who is absolutely wonderful, and has been taking care of me very well the past month. I'm very happy with him, and I'm finally getting the care that I need. That's something that I've never had in my life.
Hey Danielle,
Well done!!!! :yahoo
Really happy that you are getting some 'quality' care now .... keep well.
Poirot
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Thanks, Poirot! :biggrin I'm very happy about it myself. I think it's about time that I get the care that I need. :happyyes
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Danielle,
It is so wonderful that you are having some positive things happening in relation to your health - you deserve it after all the traumatic things that have happened to you. Hope Exjade does the jpb with no side effects, and to have a caring doctor! That is what we all hope to have. :clap :yahoo Jean
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Hi
To those who have started with only Exjade and not doing any combination therapy..
Can anyone tell me how long it take for the Exjade to show results?
Suppose you have started with Exjade with the SF at a certain level, then how long does it take to show that there is a change in the SF reading?
Anyone who was on the trail maybe able to help, since the regular availability of the drug is just about 3-4 months..
shikha mitra
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Some say that it takes a few months, but I had results in 6 weeks. My ferritin 6 weeks prior to Exjade was 1600, and 6 weeks later it was 879. :biggrin
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Hi Danielle
But you are also taking Desferal along with Exjade. What is the dose of Exjade that you are taking? It has to be per body weight right?
shikha Mitra
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I'm on very little Desferal. Desferal itself, even at high doses, never reduced my ferritin that much in such little time. I'm only on 2 grams of Desferal, subq, once or twice a week. The amount of Exjade I am taking is 1750mg. Yes, it goes by body weight. Exjade dose should not exceed 30mg/kg body weight.
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Hey Danielle,
Did the Exjade rash clear up and have their been any other side effects?
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Yup, rash is completely gone. :yahoo You were right, Andy. It went away between 7-10 days. :biggrin
No other side effects ... yet. :grin
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That's a great news. Good going Danielle. Exjade is the thing for you now! :woot :yahoo :clap :flowers :jumping :thumbsup :party
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That's great news Danielle. I am so glad that rash cleared. You had it worse than most people but even then it cleared up quickly.
We'd like to hear from every single person on Exjade about side effects, if any, and also on what it does to your ferritin levels. Many people will soon be making a decision on whether to switch to Exjade and your feedback will be of tremendous help.
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Hi Danielle,
Great News.
Is Exjade recomened for small children, say age between 3-5 years.My daughter is on the combination of Desfaral + Kelfer
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Thanks, Sajid and Andy. :hug
Alpa, Exjade can be used in children 2 years of age and older. :happyyes
http://www.pharma.us.novartis.com/product/pi/pdf/exjade.pdf
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Hello All,
Is there anyone in India who is taking Exjade?
My niece(16 months) got her Ferritin level checked and it was around 1300. She will need to start Iron Chelation now and I was wondering where is it available in India and how can we get it.
The doctor in India where my niece goes for Thal treatment has mentioned Kelfer, but I want to know if Exjade is a better option. I know it is new but I think Kelfer has some side effects which might happen to some and not to other's. I also know Exjade has some side effects as mentioned in the thread but I think it looks a better option than Kelfer. Although, I am NOT a doctor, this is just what I think.
-Narendra
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No, Exjade is not available in India and it will also not be possible for you to get it for her from the USA.
L1 is a better option in India. The amount of L1 or the dose of Desferal vary from person to person. Some do well with a combination therapy, while some are only on L1 and again some are only on Desferal. L1 is widely used in UK too, but for some unknown reason, it is not used in the USA.
L1 is much cheaper than Exjade.
L1 can react adversly in some patients, so it is to be take under supervision. Joint pains and very rarely neutrepaenia can takes place with L1.
So chelation is a process of trial and error.. what suits one might not suit another.
1300 SF is not too high, but obviously chealtion ought to be started soon.
Maybe your neice's doctor could start with a combination therapy and monitor her carefully.
Hope this helps. If you any other questions, please ask.
shikha mitra
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Narendra,
I don't know how much truth there is to it, but I have been told that within one year, exjade will be sold in India...possibily by another company as is the case with kelfer. if so, expect a much lower price than in the US.
you still have a bit of time to make a decision and perhaps you can talk to mr feroz about his niece who has only used kelfer and has developed very well. if you need, I can give you his email address.
if you do choose kelfer, demand only a very small dose for the first month or so while the child gets used to it. most doctors are stupid idiots...yes you are and you know it...when it comes to prescribing kelfer..I can tell you half a dozen people in this group than can give you better advice on starting kelfer than any "well trained" doctor on this planet...and if any doctor wishes to respond, please keep your smugness to yourself cause you haven't got anything to say that this new yorker won't shove back in your face....when we hear the horror stories of patients starting on kelfer and doctors giving way too high a starting dose we really wonder if there is anything in your heads besides medical text books...for God's sake, talk to some damn patients before you kill them! read through the posts in this group and see what your patients think of you...why do so many patients think doctors don't give a royal crap? every morning when you look in the mirror ask yourself this question before you deal with one single patient...show some compassion and for God's sake use some common sense....why start a patient on the maximum dose of any drug before seeing how well they tolerate it? my doc started me on 1/6 of my current dose of synthroid before moving me up slowly to my current dose.....stop taking short cuts and think about your patients rather than your 6 weeks of vacation every year....and why? why do so many of the doctors from poor countries flee their native lands for the riches of western medicine rather than tending to their countrymen?!!! I don't get paid for this and I have a hell of a lot more compassion for the patients than most doctors do.
OK, I'm done venting for now but some day I will tell the world what the doctors did and didn't do for Lisa and why she would still be alive if the had a clue....it's been over two years but I still am not ready to lambaste the doctors responsible for their completely uncoordinated care and their way too late reaction to her problems. I have no doubt that Lisa would still be alive if the doctors gave a crap about what they do....and maybe I'll share some of my own horror stories of my hospitalization for 18 days for a burst appendix and tell you why only my own stubborn determination kept me alive in spite of the well-trained surgeon's best attemtps to kill me...well, he only got more incompetent and ended up getting sued for sewing a woman's intestines to her uterus. explain that one away...this is the hospital's top surgeon? wow!
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Shikha,
I can tell you why L1 is not available in the US. I will say a few words an you can put them together.
Novartis. Political donations. big company has lots more money to pay politicians than small company. exjade approved in record time...every single doctor at the TIF conference recommending kelfer as a superior chelator for the heart. yet FDA still dragging feet on L1. it all adds up to...drug companies are the only industry more profitable than the oil companies and they say what does and does not get approved....we can talk Oliveri til we are blue in the face but her studies have been throughly discredited by 15+ years of kelfer use in India.
it's all about money and even with exjade it's money talks and the rest of you walk. $3500-$5000 per month for exjade... :wtf
just compare the price for kelfer in India to ferriprox everywhere else. what an eye opener that is. Thank God for Cipla...if it wasn't for them my Indian friends wouldn't even be alive and quite frankly I wouldn't even be sitting here posting to you. my early friendship with Indians and Lisa are 50/50 responsible for my commitment to this group and is why my very first conference had to be in India. without the help of Cipla, supplying kelfer to Indian thals, the people who were alive to befriend me and make me more than an observer in this group, would have died many years ago...even now I mourn my dear friend Gurleen and miss her so very much. knowing how much my friendship meant to her has been such a driving factor for me and I cry every time i think about what a rotten fate life brought her. :sadyup
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Yes Andy.. all that long drawn controversy about L1 in the USA.................
I too think L1 is a boon to so many patients and has helped them to stay alive.
It just needs a careful monitoring. It might suddenly act up on some people if the dose is not correct or even otherwise.
Even Exade is not a proven drug yet as Desferal.. we still have to wait and watch how effective this Exjade will be.
So my advice to Narendra would be, as I said to start with a combination therapy of Desferal and L1.. and ofcourse the body weight of the patient has to be considered when the dose of the drugs are to be prescribed. Since Desferal is too painful for a small child it is always good to use an oral chealator along with it.
Narendra, first of all it is very important for one parent of the child to read about Thal, the various treatments that are available, the various chealators used etc.. that is the most important factor in caring for your child I think. Ultimately these children become their own doctors. :smile2
From my own experience and whatever little I have heard from experts, method and dose of any chealator will vary from patient to patient and even reactions will vary. So it is all really a trail and error method. Sometimes at the onset L1 can have a reaction like severe joint pains... which might dissapear after the drugs are stopped and re-continued after a break or a smaller dose is given. Some patients might not react at all. And very rarely Neutropaenea can occur. So it will need careful monitoring for some time.
But I think a combination of L1 and Desferal is the best option available today.
shikha mitra
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And Andy... I meant to also ask, how is it in Maldives...?? Are they also having a conference?
In case you meet anyone who can answer my question... if the stem cell of the baby of a Thal major can help the mother ?
I know it can be too far fetched... but maybe someone can answer my question. :smile2
You have fun and take care....
shikha mitra
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Wow Andy! That was really something against those less caring doctors.
Take it easy! I guess the heat of Dubai is catching on you! :biggrin
There's still the Maldives conference to go to. You might get to face the fact that nothing much has been done since last year except Exjade!
Well, I pray I am wrong.
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Shikha,
Everything you said is so true. My only question is if patients, parents and friends know these things, why don't the doctors? Obviously any med should be started out with a lower dose yet we keep hearing about patients having serious abdominal reactions to L1 when first starting becuase the initial dosage is too high. Please doctors, stop rushing the patients. They have totally messed this up in maldives, thereby depriving their patients of a life-saving chelator....I am planning on raising a little hell when I get there.
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Not the heat of Dubai that has got to me so much as reading post after post about how little the doctors seem to know or even care to know about thal. Is very frustrating. If I, who have no training can learn, they could also take some time off the golf course and also learn.
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In case you meet anyone who can answer my question... if the stem cell of the baby of a Thal major can help the mother ?
shikha mitra
I am wondering the same thing too and i agree with you. Hopefully there is a way that the stem cell could help a Thal mother.
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Hello all,
Great news about exjade,hoping that it can reach all countries ,especially developing ones as Egypt
i am trying to find it hear ,hope i can find in shaa Allah
Best wishes for u all :wink
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I don't know how much truth there is to it, but I have been told that within one year, exjade will be sold in India...possibily by another company as is the case with kelfer
Thanks Andy and Shikha for your replies regarding ExJade in India.
I also found out from some doctor's in India that Exjade is NOT available right now. Here is what he quote's -
"ExJade is currently marketed only in USA and Switzerland. Novartis informs me that marketing in India will start end 2006"
Just wanted to update the post so other readers can get information about this too.
-Narendra
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Hello to all
I read and hear that "oh when is Exjade coming" "I can't wait for Exjade to arrive" I'm on Exjade thank god" "In my country Exjade isn't being trialed" and "In my country Exjade is approved" but we must thank our stars for the fact we are still here living and living a healthier lifestyle because if it wasn't for Desferal we wouldnt be here at all.
Never forget that Desferal is the "gold standard" of chelation therapy even though we all hate injecting ourselfs and in some contries to date Desferal is still non obtainable, that's the wonder drug that kept, keeps and will keep most of us going.
Miaki
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Well put Miaki.
What is Exjade, how successful it will be in long term, what are its side effects. I will leave future to answer that. Atleast I know "Desferal" and its experiences. I hope Exjade will work wonders for all Thals.
Thanks
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All I know is that most people (including me) find it better to swallow pills than poking needles. It's really hard for us and especially small children to go on with this every night. Furthermore the availability and price fluctuations during shortages in developing countries makes it more unpleasent.
So it's not wrong to wish for something convinient. However, we might experience the availability and price issues with Exjade too.
And about that Desferal comming early than Exjade; well that's our tough luck! I mean, if Exjade had came before Desferal then I can assure you that no one would have liked to switch to Desferal like they are willing to, for Exjade.
Just my minor thought. Keep cool :biggrin
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When I was younger all I heard was that a tablet would be out in 10 yrs time. A short time later my mother was popping me with pills & then the pills went away. But I knew nothing and kept counting those days, weeks, months and years for this new wonder tablet to appear - that was 27 years ago & I am still waiting just like everybody else.
I have traveled & seen how many patients around the globe can't afford to get Desferal or that Desferal is not available in their country. (That in it’s self is a crime) I have a few times sent packages to various countries that would deliver pumps, desferal, syringes, tapes & whatever other medical needs are needed.
I feel for the younger generation of thal patients coming thru now days. When I go to clinic for my own transfusion & hear the poor child in the treatment room crying, I close my eyes & try to block out the memories of my childhood. (Not that I had a bad childhood but the memories of nurses & doctors pinning me down to poke me with a needle to “make me better” mentally that didn’t make me better if anything it %$&^@#$ me up. My generations of thals were guinea pigs. They didn’t know what was expected of thals & how we would survive & if (like we have) they think we are miracles. When doctors hear I’m a thal patient they say “and your still alive?” I look at them sometimes & respond “ Hell yes – why don’t I have a right to LIVE?”
As we know L1 is an oral iron chelator but again works better in partnership of Desferal. As much as we don’t want to think about it Desferal will always be around. But what makes me think is what a lovely coincidence that when the patent for desferal ran out exjade was suddenly appeared!! :huh
My minor thought’s on such a major topic……
:smile
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Miaki
I totally agree with you.Hats of to you guys.
When ever we take our small daughter of transfution not only her but we also have a terrible time when she is candalised. Sometimes or rather most of the time its very diffcult for the nurses to find her vain, so she has to be pricked twice or thrice. Hats off to the nurses also, they are very patient and nice.
Talking of not getting vain while pricking, Can any one suggest a better way to find the vain so that just the one prick can be the correct vain.We heard from some one that if the child gets a nice hot water bath the vains are visible and its easy to prick ( Which we do always before going to the hospital). Also we apply Emla cream on the hand , so that while pricking it does not pain the young one.
Miaki, I am very happy to read that you have almost in the 3rd decade.It gives me immence confidence and happiness that our daughter will also have a very long and beautiful life. After all, God is always Kind.
Bye & Good Luck
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Alpa
My daughter had a same problem (vain detection) two years ago. To overcome the problem; hospital used to call a specialist in infant. Sometimes we were lucky or otherwise. I think over the period of time this problem will resolve itself as the child grows.
Good Luck.
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Hi Alpha
There is a swab that enhances the veins. You simply wipe the area and under a light your able to detect the veins. (I have a packet at home which I picked up in Italy Polermo afew years ago at a TIF conference. I will post with more details when I find it) If anybody knows what I'm on about please post.
Also you can try using a wheat pack. Heat the wheat pack in a microwave once your at the hospital and place on the area your going to use.
I wanted to mention something that I should of memtioned from my last response. That we should never loose sight of the wonderful work our nurses and doctors do. Its must be hard on them as it is on us.
Regards
Miaki
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What is the cost of Exjade per gram in USA? Does any one know this? Who are the suppliers of Exjade? Is it directly from Norvartis or are there distributors? Norvartis seems to be very tight liped to talk about price as they want 200 million dollor per anum, may be their target. This is what I find from google search only.
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Hello Mustho (and everybody else)
Please click on the following link that I came across regarding dose, cost, and anything else you want to know regarding Exjade - ICL670 - Deferasirox (which ever one it likes to go by)
Hopefully some of this info might help clear the air with dosing, costing and trial outcomes.
Regards
Miaki
http://www.ptcommunity.com/QUIKReports/content/Deferasirox.pdf
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hi everybody! im new to this site. i would like to say that i am a proud user of the Exjade. i've been on Exjade for about 2 months now, and havent experienced any serious side effects. only stomuch akes once and a while. im taking 1000 mg every morning with water. althought i prefer orange juice; it's just that it doesnt dissolves as quick as water.
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Hi Turbo215
Welcome to the group and thats great news about your Exjade not giving you any side effects....With the stomach aches you can try taking a antacid to help ease the pain...
I am on Deferiprone and have been on it for nearly 2 yrs and am doing quite well on it actually...The same goes with me..NO side effects what so ever...My ferritin has dropped dramatically in the 2 yrs I have been on it...My ferritin is in the low hundreds...
Take care good luck and speak soon
Smurfette
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Antacid is not allowed to be taken with Exjade due to the Aluminium in the Antacid. People need to avoid taking anything that has Aluminium while they are using Exjade
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Hi, havent been so active lately(->at all ;) )
I recently started on Exjade. I have had all the signs(all over the body). Thank God, it is all over.
I dont know the effect yet, I will know later this week.
Now that I am off needles I feel like there is something missing. Maybe we dont miss it until it is gone :biggrin
Take care
Kochi
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Congratulations on getting Exjade! :biggrin
Now that I am off needles I feel like there is something missing. Maybe we dont miss it until it is gone :biggrin
Take care
Kochi
As far as needles are concerned; I'll be glad to miss them right away!
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Flower there is an antacid you can take that doesnt have the aluminium in it..Its called Rennies and they are really good...all they are calcium and magnesium...
they will help with the heatburn...
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HI Andy and Danielle, I thought I should write as to where our Rochester patients stand on Exjade. One patient is doing well and ferritin going down 100 points a week another patient is going up. He already threw away his pump and his mother is very worried, Is there any chance that exjade will not work on some patients? He has been on it for 5weeks. He takes 4 pills a day and the doctor said the most he could take is 6 pills a day. HE did not get a rash but is in the bathroom alot. I have been told that the iron does not bind in the urine but in the bowel. I told him to come to this site and seek some answers. Thank you for all you do. God bless you all. Love Lisa's Mom Shirley Cammilleri
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Hi Shirley,
I know one patient who was on exjade for 5 months before her ferritin went down. It is all related to the dosage. Her dosage was gradually raised until the ferritin finally started to decline. The patient whose ferritin has gone up will probably need to go to the higher dose once his digestive system is handling it better. Everyone I know of who has been on exjade has lowered their ferritin, some much quicker than others. If he can tolerate it he should go up to the higher dose soon.
I'm glad to hear from you Shirley. I've been hoping you're well. I don't know if you've read any of the posts about my trip to Maldives, but it was Lisa who introduced me to the patients there and I know she'd be so happy to know I got to meet them. They were all very special to her and she did a lot to help them out. I think she'd be really glad to know her work continues.
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Hello,
I have a couple of questions about the Exjade. My son is on Exjade now for a couple of months. He is only 3 years old. He start with a 1 (300mg) pill a day but it didn't work so we had to increase the dose to 3 (350 mg) pills daily. He didn't have any rush when we start the pill. When they increased the dose his liver enzymes rice up to ALT - 169 AND AST - 89. We stopped the Exjade for about 3 weeks and his Ferritin was 1650. We start the Exjade again when his liver enzymes comes down to normal. After 2 weeks on Exjade his liver enzymes is elevated again up to ALT - 141, EST - 86. I think he can’t tolerate the Exade. It's anyone out there had the same experience. Should we stop Exjade and start L1/Kelfer (which I think is not available in USA) or stat the pump. Any advice will be appreciated.
Thanks.
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While going through this site, I find that it says that people with a damaged liver should avoid all dairy products (including milk). I just want to add to my previous post that my son is drinking a lot of milk, 3 to 4 8oz bottles a day.
Could the consummation of too much milk, be the problem of his elevated liver function?
Does anyone have any viewpoints on this?
Thanks,
Emily
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Hi Shirley, it's good to see you around. :hugfriend
If it wasn't for Lisa, this group wouldn't exist, so all the "thank you's" go to her. :)
There is definitely a chance that Exjade will not work for some patients, but 5 weeks is definitely not enough time to make a final judgement. I wish he hadn't thrown his pump out, though. That was not a good decision. :(
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Could the consummation of too much milk, be the problem of his elevated liver function?
Hi Emilly,
Exjade can cause an increase in liver enzymes. If your son doesn't already have a problem with liver function, it is most-likely not the milk. If his doctor is not concerned about the liver enzymes being elevated, I would stick with the Exjade.
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Hi Danielle,
Thanks for the response. He never had a problem before he start the Exjade. His doctor is a bit concern and he wants us to stop the Exjade again, till his liver enzymes are back to normal. My question was: Could the consummation of too much milk, be the problem of his increased liver enzymes?
The liver has to work harder to break down all that fat in the milk.
Emily
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Emilly, it shouldn't be the milk giving him the problem, if he has a fully functioning liver. It's most-likely the Exjade, but it should be closely monitored by the doctor. If his liver enzymes go down each time he stops the Exjade, then that is most-likely the problem.
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Hey, i am new to this forum. Jus found out while googling for something. I am a beta thals major and needing transfusion every 4 weeks.
I am on Exjade (more known as ICL 670 in this part of the world, Malaysia). Started it in Nov 2006, been taking it around 3 months i guess but stopped 1 week in between that period. It didnt start off that great for me as i had rash for almost a week and i needed to use the toilet more than usual. After 1 month of using it, i went for a test and results came out that my liver enzime is 5 times more than usual :( Stopped it for a week and restarted again after my enzimes went back to normal on the 2nd test.
I am using 1125 MG, 2 big tablets and 1 small tablet.
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Hi all :biggrin
I have been a bit lazy lately hehe. My doc has increased the dosage. I now take 4 big pills a day. Its like swallowing sand hehe
Take care :hugfriend
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I'm so excited :yahoo Exjade will be soon available here in the Phiilippines and I'm dying to try it out already, just hope that I would not have any side effects and will be a good alternate when desferal is not available. :grin There will be a product launching of Exjade come March 2 and hope I can afford it and be able to buy it ASAP! :smiley
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Congratulations Lyanne!
I wish you all the luck on getting Exjade and hope that it will suit you perfectly. :goodluck
Take care, Peace!
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Hi all :biggrin
I have been a bit lazy lately hehe. My doc has increased the dosage. I now take 4 big pills a day. Its like swallowing sand hehe
Take care :hugfriend
Wow, taking 2 is already like hell to me. But well, at least it is better than desferal :biggrin
I'm so excited :yahoo Exjade will be soon available here in the Phiilippines and I'm dying to try it out already, just hope that I would not have any side effects and will be a good alternate when desferal is not available. :grin There will be a product launching of Exjade come March 2 and hope I can afford it and be able to buy it ASAP! :smiley
The highest side effect you probably get is increase of liver enzymes and also serum creatinine. The price what i heard is RM 2800 (800 USD) for a bottle of 500MG 35 tablets. ??? I am not sure too as i am under the free trial program.
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Thanx Sajid and Tifosi! I really hope it's not that expensive or else I couldn't afford to buy one. I would update you on how much is the selling price is, when the product have already been launched and available in market. will definitely tell you how is it working for me. I still hope it would work for me
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Hi! I'm new to this site. I've been on Exjade since Sept 2007. My ferritin went down once only in the beginning and then has continued to rise. What am i doing wrong? I'm already taking the maximum dose for my weight. Any help would be appreciated.
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Hi Polly and welcome,
What dose of Exjade are you taking, mg/ per kg body weight?
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30mg
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Hi Polly,
Your experience follows the pattern of many other patients who have also reported an increase in ferritin after starting Exjade. Most also report that this levels out and begins to decrease after 6-12 months. Since Exjade is still fairly new, doctors are still learning what the effective dose is for lowering ferritin. Although in most places, the maximum dose is 30 mg/kg, some doctors in the US, including Dr Vichinsky are using doses as high as 40 mg/kg in some patients. This is more likely to be used in patients with severe iron overload. I would suggest to give it a few more months at 30 mg before making any changes.
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It's around RM2800-RM3500 for 28 tablets 500mg pack in Malaysia.
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Thanks Andy, My ferritin has gone up to 2600. Tomorrow I'll have new results. This ferritin level is high for me and my previous Dr said that when it is above 2000 that is when damage occurs.
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Got my results 3300. I've gone back onto desferal. This is the second time i've tried exjade. I guess this drug isn't for me! What do you think of the other tablet? I'm worried about side effects.
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Hi Polly,
Just out of curiosity, what's your desferel now going to be? Like you I have seen increases in my ferritin :( However, my problem is not as severe as yours. Im sorry to hear that you're back on desferel, then exjade is not for everyone. All the best with your treatment and in the future.
Nick
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i've been put on 4g subcutaneous. Its okay. I kind of feel relieved to be back on desferal. I guess it's better the devil you know!
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On the subject of Exjade and how long it takes to show a reduction in ferritin in some patients.
I talked to a friend in Hong Kong this past week who was on a one year trial of Exjade and continuously saw her ferritin rise. After the trial, she was finally able to get some compensation to help cover the costs, so she resumed Exjade. Since her first worrisome year on Exjade, in which her doctor told her to be patient, her ferritin has dropped in half, from 7000 to 3500. It took some time but she eventually had a significant reduction. Her doctor had told her what we have heard often. Initially, the iron being released from tissue and organs can cause an increase in serum ferritin but this will eventually correct itself. Serum ferritin is not the ideal way to measure iron concentrations and a liver scan would be of much more value for this purpose.
I would recommend that patients have patience when using Exjade.
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ferritin at 7000 is extremely dangerous. I do believe that Exjade was clearing iron from my tissue as my hormones became regular but i can't risk damage to the heart. I've got 2 children!