nervous about exjade :(

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Offline red

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nervous about exjade :(
« on: November 14, 2007, 10:28:26 PM »
Hi all!  I would definetly appreciate some help!
My doctor, for the past 2 1/2 years has been suggesting exjade to me.  But the thing is, i'm extremely nervous about taking it..because..I heard, and have read, that its very different for every individual, and that there could be chances of kidney damage.  Another problem for me, is that i've also heard/read that it might not be effective, and even if it is it could take a few months to find out.  I'm 24 and been on the pump since i was 4 or so..so..I'm not sure if this is just my 'attachement' speaking, or a genuine intuitive feeling.  It just seems to me, that Desferal has been working so incredibly for thal for so long, and it's side effects are pretty much slim to none, or about the same for every individual.  So exjade, seems a little 'chancy' to me. 
I dont know everyone..my doctor is extremely set on me taking exjade.
Another note...i've changed my diet so i really dont have that much iron intake, and i also go to the hosp. every 3 weeks now, with 2 units.  This has only been for the past 3 times.  But about a month 1/2 ago..my ferratine was around 1400..but now its 1942.1!  I dont know how this could have happened in that short of a span!, cuz i use the desferal to its normal standards. 
uhhhhhhhhh...i dont know..i'm kinda weirded out here.  Your help would be GREATLY appreciated :)

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Offline Andy Battaglia

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Re: nervous about exjade :(
« Reply #1 on: November 15, 2007, 01:54:26 AM »
Hi Red,

Don't be too concerned about the change in ferritin levels as ferritin levels can change because of other reasons, such as having a cold or infection, and the tests are not always totally accurate. See how it looks at your next test before you alter your chelation routine.

Some patients do get elevated creatinine levels while using exjade and this can be a sign of kidney disease. Patients with a prior history of kidney problems should discuss this with their physician before using exjade. All patients who do use exjade should have their creatinine levels checked at least once a month. If you haven't had high creatinine levels in the past and no kidney disease then you are a good candidate for exjade. I know many patients who are using exjade and also doing quite well in lowering their ferritin. It does seem that it takes awhile for ferritin to drop while using exjade, but after talking to dozens of patients who use it, what I have observed is that this happens because it takes some time to reach the maximum dose, as slowly raising the dosage is proving to be the best way to minimize the short term side effects, which include the rash and stomach discomfort. We also know several patients, including Danielle who are taking both exjade and desferal and having no problems with the combination, so if you're concerned about your ferritin rising when you start exjade, it is possible to continue with desferal too.

One thing I want to point out is that it is the consensus of top thal doctors that using more than one different chelator during your life is a better long term plan, as it reduces the long term side effects of the chelators. Desferal is known to cause hearing and vision problems in some patients over long use. L1 has very serious side effects in a small percentage of user (although, if more research is done into this, it may be found that the drop in white cells associated with L1 use, may actually be due to the white cell count dropping for other reasons. One member here was taken off L1 for some months when it was in fact the result of hepatitis C, which the patient was not aware of but the doctors were. I have noted that several patients I know have been taken off L1 when there was some other reason why the white cell count may have dropped. In most cases, L1 can be started again once the white cell count has risen). L1 is an excellent chelator that has been shown to extend the lives of thal patients better than any other chelator, largely due to its superior ability to remove iron from the heart. Unfortunately, it is not available in the US, other than in hardship status cases for patients who cannot tolerate other chelators.

It is absolutely up to you which chelator you choose and you brought up a point about attachment to the pump which is very valid. I have talked to many patients who have experienced some separation anxiety from their pumps once they started an oral chelator. It is very understandable, as patients view the pump as a protector and it isn't easy to abandon it. (By the way, anyone who has permanently abandoned a working pump, please let me know. Their are always patients asking for them and the cost is extreme for many patients.  I can arrange for postage for anyone who wants to mail a pump). It may be time for you to consider an oral chelator, and as I said, you can continue desferal with either oral chelator, so that will give you a chance to see how well you tolerate exjade before committing to it. Start at a low dose and see how it goes.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: nervous about exjade :(
« Reply #2 on: November 15, 2007, 07:04:18 AM »
Why is L1 not available in U.S? It has worked miracles for patients here,definitely increasing the life span,why such a miracle drug is not available there? Is Novartis not working in U.S? It would be strange since it's a multi-national company.

ZAINI.
^*^Xaini^*^

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Offline red

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Re: nervous about exjade :(
« Reply #3 on: November 15, 2007, 09:04:23 AM »
Andy,
thanks very much for your response! 
I might have misunderstood you about the combination approach.  Did you mean that as taking exjade and desferal on the same day, or such as 1 month exjade 1 month desferal?..or so forth.  I've contacted exjade about the combination approach and the pharmicists there informed me that it is very unadvisable.  They said that exjade is not meant to be taken with the desferal.  But you said that Danielle was taking this approach and that she is fine..so i'm a bit confused as to whether exjade is stating this to protect themselves from accusations, or if doctors are going on their own proffessional opinions about the combo? 
Also, do you have any recomendations as to how to bring ferratin levels down besides being compliant (or is that the only way)?
Thanks again!

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Offline vic

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Re: nervous about exjade :(
« Reply #4 on: November 15, 2007, 01:45:10 PM »
my husband and I went to a small conference that talked about chelation.  the only combination therapy that he said was ok was L1 and desferal.  there have been no studies done on exjade and desferal and he did not suggest it.
also, L1 is not recommended for kids (thats what our doctor says)  its desferal until he turns six and then we can try exjade.

another point:  we are very compliant and are so disheartened at how slowly his ferritin is goin down. 

October ferritin:  1990
November ferritin:  1909.

a lot of hard work, and seeing very small results.  christian has one 500mg vial as he is only 20 kg.  he will go to 2 vials when he reaces 22 kg.

cheers vic

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Offline Zaini

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Re: nervous about exjade :(
« Reply #5 on: November 15, 2007, 03:48:36 PM »
Hi Vic,

Zainab is using L1 since last one and a half or two years (i am sorry i can't recall the exact duration),and it's doing good for her ,she is on combination therapy of desferal and L1,and she is six years and 8 months old ,so she must be below six when she started L1,is there any particular reason doctor told you that L1 is not recommended for kids?

ZAINI.
^*^Xaini^*^

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Offline Andy Battaglia

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Re: nervous about exjade :(
« Reply #6 on: November 15, 2007, 06:46:16 PM »
I don't know if there have been any official trials using exjade along with desferal but is has become more common in the US. Exjade was first approved in the US, so doctors here do have more experience administering it to patients so they may also be more willing to try it in combination with desferal. In the US it is also approved for age 2 and up, whereas in many places it is approved for age 6 and up. I did also see mention of the combination in the talks from the recent California conference and it did sound like it was being tested on patients, although I don't know if any formal trials are underway.

Our member Dallaschick, was put on the combination of desferal and exjade after going into congestive heart failure after a period of slacking off on chelating. She was put on both exjade and desferal in order to quickly lower her ferritin, as congestive heart failure in the top killer of thals and her situation was critical. The combination did work and she was eventually able to return to work.

Doctors in other countries have been much more reluctant to use this combination until there is more record of its use, just as children under 6 are not allowed to use exjade in most countries. As time passes and the record of exjade use becomes more thoroughly studied, I expect that these restrictions in other countries will be lifted.

As far as the actual method, both drugs are taken on the same days, but usually desferal is taken fewer days than when desferal alone was being used. With L1 and desferal, it is common to use L1 daily and desferal 2-3 times weekly. The only other things I can suggest for lowering ferritin are low iron diets, drinking tea with meals and trying the supplement and natural iron chelator, IP6. There is no easy way around compliance and non-compliance eventually results in death.
Andy

All we are saying is give thals a chance.

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Offline red

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Re: nervous about exjade :(
« Reply #7 on: November 16, 2007, 03:30:10 AM »
did you sayyy..  :evilplan ..death??
sike i'm kidding!
thanks again!  :)

 

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