Side effects (ExJade)

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Offline Zaini

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Re: Side effects (ExJade)
« Reply #15 on: November 24, 2007, 10:01:13 AM »
Hi Lyanne,

 I am so sorry to hear about your sickness, i hope you are doing fine now, i believe that Danielle was using exjade along with desferal,you can ask her about that,i hope she is doing fine.

ZAINI.
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Offline Andy Battaglia

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Re: Side effects (ExJade)
« Reply #16 on: November 24, 2007, 06:49:47 PM »
The combination of exjade with desferal is being studied by Dr Vichinsky but no information is yet available. The official position of Novartis is that since no studies have been concluded on the combination use of the two drugs, that they should not be used together. Of course, Novartis has no choice but to say this in order to protect themselves from possible lawsuits.

We do have several reports from patients who have used both drugs together and have had success in quickly lowering ferritin levels from dangerously high levels. Some doctors in the US are prescribing the combination. As always, the patients are the guinea pigs for this research. I would suggest that anyone deciding to try this combination, begin with low doses of exjade and see if the combination is tolerated before using higher doses. This decision has to be made by the patient and his/her doctor.
Andy

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Offline Manal

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Re: Side effects (ExJade)
« Reply #17 on: November 24, 2007, 11:06:33 PM »
Dear Lyanne :hugfriend :hugfriend

Very sad to know about your sickness, hope you have full recovery. Take care and eat well
Manal

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Offline Lyanne

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Re: Side effects (ExJade)
« Reply #18 on: November 25, 2007, 10:01:09 AM »
 
   Thanx Zaini and Manal, I'll be fine soon. Andy, thanx for clearing that up for me. Well, hope i'm one of those patients who are sucessful in using both drugs and does not have any side effects. and thanx guys!!!!!!!!  :hugfriend :wink
LYANNE :yahoo

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Offline §ãJ¡Ð ساجد

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Re: Side effects (ExJade)
« Reply #19 on: November 25, 2007, 03:07:44 PM »
Hi Lyanne,

I hope that you are feeling better now.

Get well soon :getwell
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Offline Lyanne

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Re: Side effects (ExJade)
« Reply #20 on: November 28, 2007, 05:46:06 AM »


     Thanx Sajid! :hugfriend :grin i'm feeling better now, hopefully i'd be okk soon...........
LYANNE :yahoo

Re: Side effects (ExJade)
« Reply #21 on: January 14, 2008, 03:47:28 PM »
Hi Lyanne,
Great to know that you're better now.
B thal Girl

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Offline Danielle

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Re: Side effects (ExJade)
« Reply #22 on: January 14, 2008, 04:18:09 PM »
I'm so glad you are doing better now, Lyanne!  :hugfriend

Yes, I was one of the patients using combination therapy of both Desferal and Exjade, and I was fine as far as combining the two.  The only problems I had were due to the Exjade on its own (severe rash and diarrhea), which eventually subsided.  I'm only on Desferal right now, though, because the recent surgery that I had required me to stay off of the Exjade.  I will be starting the Exjade again soon, though.  :)

As Andy had said, we are the guinea pigs, as usual.  There just hasn't been enough study for Novartis to give its blessing on combining the two chelators.  They're just trying to dodge a lawsuit.  :rotfl

Re: Side effects (ExJade)
« Reply #23 on: March 12, 2008, 05:19:08 PM »
Just saw this online and wanted to share it.

EXJADE Reports of Liver Failure, Deaths Lead to Label Changes
Date Published: Tuesday, March 11th, 2008
   


EXJADE has been linked to liver failure and deaths in some patients, prompting its manufacturer to add new warnings to its label.

EXJADE, which is known generically as deferasirox, is made by Novartis and is used in the treatment of chronic iron overload caused by blood transfusions for the treatment of anemias for adults, adolescents, and children aged six years and over.  EXJADE is also used in children aged two to five years who cannot be adequately treated with deferoxamine. 

It is recommended that therapy with EXJADE be initiated and maintained by physicians who are experienced in the treatment of chronic iron overload due to blood transfusions.  Recently, cases of severe liver problems— including some with fatal outcomes—have been reported internationally following the post-marketing use or commercial use of EXJADE.  Most cases involved patients who suffered from multiple medical conditions, including liver disease (cirrhosis) and multi-organ failure.  When taking EXJADE, liver function should be monitored monthly. EXJADE treatment should be ceased if there is any unexplained, persistent, and progressive worsening of liver function.d start EXJADE therapy.  A serum ferritin level is a marker of iron level in the blood.  The EXJADE use was stopped and the patient recovered. Based on the information available, the potential role of EXJADE cannot be excluded as having a link to the adverse reactions, however, after reviewing this case, Novartis and external medical experts agree that there are extenuating circumstances around this case.

Recently, a report of severe liver problems with altered brain function—encephalopathy—have been reported to the Food and Drug Administration (FDA) in the Unites States in a patient who had taken EXJADE for five days.  The patient’s hospital records indicated that the patient also had a history of alcohol use and had slightly abnormal liver function prior to using EXJADE.  Also, the patient was treated for a non-approved use of the drug while also having a serum ferritin level that was more than 10 times lower than the level recommended to start EXJADE therapy.  A serum ferritin level is a marker of iron level in the blood.  The EXJADE use was stopped and the patient recovered. Based on the information available, the potential role of EXJADE cannot be excluded as having a link to the adverse reactions, however, after reviewing this case, Novartis and external medical experts agree that there are extenuating circumstances around this case.

Since October 31, 2007, there have been a total of 36,797 patients treated with EXJADE:  31,444 since its approval and 5,353 who were treated in clinical studies, pre-marketing.  Of these patients, there have been a total of 24 international reports of liver failure.  Of these international liver failure reports, 21 cases occurred post-marketing and three occurred during clinical studies.  Patients in Canada reported two of the 24 reports of liver failure.  No patient with normal liver function or without additional life-threatening complications of their underlying disease has developed liver failure.

EXJADE has not been studied in patients with liver problems and must be used with caution in patients with severe liver problems.  If you have any questions about the relationship between EXJADE and recent reports of liver problems or about EXJADE in general, please talk to your doctor or pharmacist or contact Novartis Pharmaceuticals Canada Inc. at:  1-800-363-8883.

Although a clear relationship between EXJADE and severe liver problems has not been established, the Consumer Information for EXJADE has been updated to include this important safety information related to current findings linked to liver complications. For more information on EXJADE, the Consumer Information document can be located at:  www.novartis.ca.


Re: Side effects (ExJade)
« Reply #24 on: March 12, 2008, 05:49:46 PM »
B Thal Girl,

The liver problems for exjade users have been reported as stated above. In majority of patients the problem was pre-existing and worsened by the use of Exjade. A standard protocol before starting exjade is to check liver function through blood test and weekly test after starting exjade for three months. Once it is established that exjade is not interfering with liver function, the frequency of blood test can be reduced to monthly.

My daughter is using exjade for almost 50 days now and we have only experienced anxiety as a side effect but she is getting better.
Regards.

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Offline Nur

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Re: Side effects (ExJade)
« Reply #25 on: March 14, 2008, 04:13:37 AM »
Dear B Thal Girl,

May I know where is this article from?

Thanks.



Nur

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Offline Andy Battaglia

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Re: Side effects (ExJade)
« Reply #26 on: March 14, 2008, 05:35:19 AM »
This warning was issued in Canada. Once again, Novartis is delinquent in publicizing this warning. They took their time with the warning about kidney failure and once again, and only "Following discussions with Health Canada, Novartis..." has acted. I could not find any new information about this on their site. This is crucial information, and patients using Exjade without proper supervision should pay very close attention. Liver ALT tests and creatinine tests must be done on a regular basis.

My biggest fear with Exjade is the same as with L1. Many patients will take these drugs without proper supervision and run the risk of serious side effects. Please do not use either drug unless you are under the care of a doctor familiar with iron overload. Anyone using Exjade should make sure their doctors are aware of these findings. Don't wait for Novartis to inform them.

http://www.hc-sc.gc.ca/dhp-mps/medeff/advisories-avis/prof/_2008/exjade_2_hpc-cps-eng.php

Quote
March 7, 2008
Subject:    Reports of severe liver problems with EXJADE* (deferasirox)

Following discussions with Health Canada, Novartis wishes to provide you with updated safety information regarding reports of severe liver problems with EXJADE*...
    *  Cases of hepatic failure (some with a fatal outcome) have been reported internationally following post-marketing use of EXJADE*. Most of these cases involved patients with significant comorbidities including liver cirrhosis and multi-organ failure.
    * As indicated in the currently approved EXJADE* Product Monograph, it is recommended that liver function tests be monitored monthly. If there is an unexplained, persistent and progressive increase in serum transaminase levels, EXJADE* treatment should be interrupted.
« Last Edit: September 13, 2008, 04:32:15 PM by Andy »
Andy

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Offline §ãJ¡Ð ساجد

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Re: Side effects (ExJade)
« Reply #27 on: March 14, 2008, 06:17:12 AM »
Great! :rolleyes

My PLTs and WBCs stay low so I can't use L1.

My ALT stays high (178 currently) and now I know I won't be able to take Exjade when it is on the verge of our reach in Pakistan. :frustrated
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Offline Danielle

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Re: Side effects (ExJade)
« Reply #28 on: March 14, 2008, 07:32:18 AM »
Quote
EXJADE has been linked to liver failure and deaths in some patients

WHAT? :faint2

Re: Side effects (ExJade)
« Reply #29 on: March 14, 2008, 12:52:37 PM »
Quote
Dear B Thal Girl,

May I know where is this article from?

Thanks.

Hi Nur,
Andy gave you one website but I actually got it off a newspaper report.

canadian family,

I am a patient just like most people on this site. i also experience fear when hearing about the various side effects of the drugs. I have found though that the reporting is a bit one sided at times and the "horrors" of one drug is always highlighted while the "true stuff happening" is hidden.

Every thing printed though always help to make sure that we are aware of what we should be monitoring ourselves, as in my case i know that I must be monitored regularly to ensure that my neutrophil counts remain over a certain level.  Just because a particular drug is working for me does not mean that I would close my eyes to its side effects. I try to do ALL my testing an a timed basis to ensure that i remain healthy.

We are each others keepers so if something comes up we should let everyone know, we cannot wait on the drug company to come forward as we know that it may never happen.

Sajid,

My counts go up and down at times as well, the important thing is the monitoring. I know that you are strong and will continue to be so keep focusing on things and they will go the correct way.

So please lets continue to support one another. We are all one big family!


 

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