Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Mike lawler on September 26, 2006, 05:35:15 PM
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Hi,
I'm new to the group. My wife has been taking EXJADE for 3 weeks. Three days ago she had a reaction, a severe rash all over her body. I took her to the ER and they treated her with Benadryl, adrenaline(EPI) and a steroid. The rash came back the next day, so we went to an other ER, UC San Francisco, and they basically repeated the treatment and gave us a prescription of a prednesone like drug. The rash is under control now, but I was wondering what others have done with the rash and after as far as restarting EXJADE.
Mike
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Hi, Mike. Welcome to the group. :biggrin
I had gotten that horrible rash as well. My doctor just lowered the dose and the rash went away on its own in about 7 to 10 days. Many people end up with this rash while taking Exjade. Most of the time it just resolves itself and doesn't come back after it runs its course. :)
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Thanks Danielle,
I wanted to get as much info as possible, since we are seeing the doctors tomorrow. You didn't stop the EXJADE until the rash cleared? My wife has severe reactions to most meds it seems, which doesn't help.
Mike
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No problem, Mike. :)
No, I didn't stop the Exjade. My doc just lowered the dose, and it went away on its own. Once it went away, my doc increased the dosage back to what it was before the rash. It never came back, and that happened back in April of this year. I've been told that the body just needs to adjust to the medication, but if your wife is generally allergic to medications, she just may continue to react differently to it. :dunno
Good luck to you guys. :hug
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Hi, Mike. :wavey
I never use EXJADE before, but I guess I'll be getting that kind of rash too if I am using the meds, since I had it quite severe in the injection site when having desferal. But I think Danielle's info is quite helpful, maybe you can try to have the dose reduces or if the rash gets too severe maybe you can stop taking the meds for a while until it went away & starts again with lower dose. Your wife is seeing a haematologist, isn't she? I'm sure that's an option the doc will consider for her case.
Anyway, I'm writing to you bcoz I have had terrible experience with the steroid drugs, prednesone. I wonder if how many of us here had been ever prescribed with prednisone? What exactly the use of the drugs anyway bcoz when I finally can manage to stop taking the meds, I found out that I'm okay without it, so kind of confuse why I should take it in the first place. :hmm
I think you should really ask the doc for clear explanation on how far the drugs would do her good, is it really that necessary to take the meds, is there any option you can have instead of taking that drugs, just ask anything you can think of! :rolleyes
Well, lots of luck then! :pray
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Hi Yenny,
What was the reason that you were taking prednisone? It is used to treat a variety of problems.
From http://www.medicinenet.com/prednisone/article.htm
Prednisone is an oral, synthetic (man-made) corticosteroid used for suppressing the immune system and inflammation. It has effects similar to other corticosteroids such as triamcinolone (Kenacort), methylprednisolone (Medrol), prednisolone (Prelone) and dexamethasone (Decadron). These synthetic corticosteroids mimic the action of cortisol (hydrocortisone), the naturally-occurring corticosteroid produced in the body by the adrenal glands. Corticosteroids have many effects on the body, but they most often are used for their potent anti-inflammatory effects, particularly in those conditions in which the immune system plays an important role. Such conditions include arthritis, colitis, asthma, bronchitis, certain skin rashes, and allergic or inflammatory conditions of the nose and eyes. Prednisone is inactive in the body and, in order to be effective, first must be converted to prednisolone by enzymes in the liver. Therefore, prednisone may not work as effectively in people with liver disease whose ability to convert prednisone to prednisolone is impaired
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Hi Andy,
I'm not quite sure why the doc give me prednisolone. :idunno
:hmm Well, back then I was studying in jakarta, I think I got too tired & was having infection in my throat, so my Hb dropped too low & I was opname for blood transfusion. The doc made some test & found out that my ferritin level is terribly high, so he administered IV desferal treatment while I was hospitalized. When I got home & check the drugs prescribed to me, it was then I learned that I was given prednisolone. I had been given the meds since I was hospitalized without me knowing it! and the doc didn't seem to bother telling me or my parents about it! :whyme Even when we go seeing him for checkup & asking for clear explanation on the drugs, he didn't say much & just prescribed me more of the meds. :mad Bcoz I've started taking the meds, I can't stop it by my own, right? I learned that this kind of drugs should be reduced slowly with doctor's advice until one who's taking it can really stop having it. So I continue taking the meds without really knowing why, actually! :nope who knows what the doc was thinking!?! :now
Even when I've got the moon-face side effect, the doc just reduces the dose a bit, I really can't stand it! So I stop seeing the doctor & go to Kuching to consult another doctor, she asked me why I need the meds, I told her I don't know, my mom assumed that the doc thought I was having auto-immune, I'm not.. even if it's true, how could he possibly diagnosed without any test whatsoever?
So the doctor in Kuching told me that I didn't need the meds & that she said really didn't understand why the doc I was seeing before gave me that meds (well, at least she's honest with what she knew & what not). So she help me reducing the dose of the meds until I can safely stop taking it. That's the story.. confusing, huh?! I felt being treated kinda like a lab guinea-pig by the doc, which was driving me crazy :madno
I dunno, Andy, I'm really confuse with my own condition. :banghead Not quite sure how to handle it right & having lack of resources for it, it's really hopeless for people like me in where I am... :'(
Sorry Mike, I'm kinda getting 'what should be your discussion' off track. Don't you have any advice for Mike, Andy? :biggrin
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Hi Yenny,
I have been corresponding with Mike with personal messages and even mentioned Danielle's experience. I also gave him a short reply at http://www.thalassemiapatientsandfriends.com/index.php?topic=342.msg3234#msg3234
Some people also get intestinal discomfort when using exjade. I think one reason people are experiencing problems is the same thing that happens when patients first start using L1 (ferriprox or kelfer). The intitial dose is too high and the body reacts. It does seem that patients starting on lower doses and then working up to a higher dose have fewer symptoms than those who start on a high dose immediately. When starting these drugs, ask the doctor to start you on a lower dose until your body gets used to the new drug.
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Thanks for your help. You have a great group website.
Mike
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EXJADE Reaction Update
I wanted to let you know the results of the doctor visit today at UC San Francisco. The resident doctor that we have been seeing said that after a reaction they typically stop the EXJADE. I mentioned the input that I received from this group and was it possible to restart after the rash cleared. The resident left to consult with the staff doctor and he said that with a severe reaction like my wife experienced (she had rash that was solid red front and back of her upper body), they would not continue the EXJADE. The staff doctor said that it was possible that the next reaction would be worse and possibly life threatening. Her current iron is at 1500.
Mike
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After reading this thread i'm nont sure what to do.
I'm on Exjade since 20 of this month. After gastrointestinal problems and abdominal pain i developed a skin rash to day ago.
My doc say it is an reaction to one of the substances of Exjade. He told me to stop the drug until the rash desapear. Than i have to restart.
Shel i start with a lower dose????
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Hi Gabri,
When Danielle developed the rash from exjade she did stop and then resumed with a lower dose and then worked her way back up to the previous dose and it did work. Her rash was terrible but was gone with two weeks or so. I would suggest letting the rash totally clear before resuming exjade at a lower dose.
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Thank's Andy,
do you know for how long time she takes the lower dose?
Thank's again
Gabri
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Hi Gabri,
I just went back and read Danielle's post on the subject and she didn't even stop exjade.
http://www.thalassemiapatientsandfriends.com/index.php?topic=442.msg3251#msg3251
I had gotten that horrible rash as well. My doctor just lowered the dose and the rash went away on its own in about 7 to 10 days. Many people end up with this rash while taking Exjade. Most of the time it just resolves itself and doesn't come back after it runs its course.
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You guys are lucky to have hands on Exjade, Its like a holy grail in Canada; Approved but not available. Even approval is associated with tons of restrictions. Just makes me frustrate soemtime.
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Hello All,
We had a detail discussion with our doctor yesterday re. Exjade. It is not prescribed for children under 6 in Canada for the following reason.
1. The clinical trial data for children under 6 is not enough to prescribe a exact dose.
2. The risks and side effects are still unknown (long term), for children under 6 the rate of growth is highest. To avoid any possible interference with their growth rate; exjade is held back as it cannot be compromised.
3. The tolrence level of Exjade is less in children under 6, possibly due to amount of liqiuid one has to take.
Health Canada has designed a program to watch the ongoing trial and prescription/side effects of exjade and will review it in two years.
Regards
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I sometimes wonder how medicines ever get approved for children. Is exjade even being trialled on children anywhere? When desferal was introduced, there was nothing else available, so the choice was that or nothing and obviously nothing carried more danger. But now that we have desferal, will other chelators even be studied on young children? The rationale may be why risk it when there is a drug that can get them to the age when they can switch to another drug, so why make young kids guinea pigs. The parents who have to administer the needles may see it differently.
But maybe for a better idea, we should ask the parents. If your child was given the chance to test a new chelator that had already been tested on adults, would you be willing to allow your child to take part in the trial? What do the parents have to say?
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Hi Andy,
That is a very interesting question. I honestly do not know what I will decide when the time comes for Lauryn to chelate.
In all honesty, I trust the Dr.s at Phoenix childrens, and they seem to think it is safe enough for her. Same thing with Hydroxyurea. they dont know if there are long term effects, but at the present time,(for thal kids) it seems to be working.?
In a nut shell, yes I would try Exjade for Lauryn,and take it from there.
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To answer your question Andy, Yes I will have my daughter participate under a watchful eyes for scientific and trial purpose. But please note if it is just for the sake of getting rid of needles than absolutely not.
Regards
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Hi, here in Australia where Exjade is now approved and on pbs its now being used successfully by almost all the patients in our unit including children under the age of 6. Just thought I would let you know. By the way, I have been on it now for almost a month and there are no words to describe how wonderful it is to use this simple method of eliminating ferritin. Its a Godsend. I will keep my fingers crossed that all the thal patients around the world will also be using it as soon as possible. Its the best Christmas present I have ever received. Christmas blessings to all......
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Hi Siena,
Do you know what is the youngest age that exjade is being used on in Australia?
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Hi Andy, I will find out more and get back to you on that one. My next visit will be in 2 weeks time. Merry Christmas.....Siena
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Hi everyone, I live in Australia. My son Jia, now 3 years and 4 months, is on exjade. He took it for a week and had bad rash. So, we've been instructed to stop it for a week. We will start with exjade again in 2 days. He has never had any other form of chelation before. This is the first one. I shall tell you what the outcome is after the next round of exjade and whether the ferritin level drops.
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Hi all
As some of you may know I was using L1 recently in combination with Desferal. My ferritin levels had dropped whilst on this method of chelation.
It has been about 6 weeks now that I have been on Exjade and things are going ok. I also developed the rash but not as bad as some reported cases. I didn't stop taking Exjade as my case was very mild and only lasted 3 days. However I must say that I do suffer alot with diarhia especially when I eat fatty foods. My ferritin levels have dropped since being on Exjade.
I will keep you posted.
Miaki
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Jia is now back on exjade again. It has been 3 days, and the rash hasn't come back. He'll go for transfusion tomorrow, and we can check his ferritin level then too. Hope for the best.
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HI freinds
my son Abdulwahab ferritin level is 1900 i talk with Dr javed a bout it he told me when you come for next check up we will see what the best drug for him or to take blood from him and throw it and this procedure must do it evey month as i think.. my quistion is is the EXJADE good for the post bone marrow transplant ? if no what the best drug for him? ...
thank you
khalifa
state of kuwait
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my quistion is is the EXJADE good for the post bone marrow transplant ? if no what the best drug for him?
Hello Khalifa,
I know of a patient (whose Iron level was around 25000) who is on Desferal after his Bone Marrow Transplant but his Iron level is NOT decreasing much (currently is around 2300) after taking it for 5 years after BMT. His doctor has also suggested to remove blood from his body now to get rid of the Iron level. This patient is in India and as most of us know no one in India has got on Exjade yet, so don't know if Exjade is recommended for post BMT.
Do give us an update on your son's visit to the doctor and what he mentions for getting rid of the Iron. Abdul Wahab is quite young and his Iron level might NOT be a major issue as this boy's who is around 18 years now, so don't compare both cases directly. I just wanted to let you know what I have heard.
-Narendra
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Dear Narendra
thank you for exeplination but also me i heard there is some who have BMT is unders desferal also some of them they have blood remove every month ..
khalifa
state of kuwait
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In the US, Exjade is approved for use with children 2 years and older. The suggested dosage is also based on body weight, the same as for adults.
From http://www.drkoop.com/ency/93/guides/000058_7_6.html
In 2005, the drug deferasirox (Exjade) was approved for the treatment of transfusion-related iron overload in patients ages 2 and older.
From http://www.us.exjade.com/index.jsp?usertrack.filter_applied=true&NovaId=3350119478090341153
Pediatric Use
Of the 700 patients who received Exjade during clinical studies, 292 were pediatric patients 2 to <16
years of age with various congenital and acquired anemias, including 52 patients age 2 to <6 years, 121
patients age 6 to <12 years and 119 patients age 12 to <16 years. Seventy percent of these patients had
β-thalassemia. Children between the ages of 2 to <6 years have a systemic exposure to Exjade
approximately 50% of that of adults (see CLINICAL PHARMACOLOGY). However, the safety and
efficacy of Exjade in pediatric patients was similar to that of adult patients, and younger pediatric
patients responded similarly to older pediatric patients. The recommended starting dose and dosing
modification are the same for children and adults. (See CLINICAL STUDIES, INDICATIONS AND
USAGE, and DOSAGE AND ADMINISTRATION.)
Hopefully, this will soon be followed in other countries so that all thal children can have a chance to have a life without the needle.
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Exjade is recommended as a replacement for desferal in patients 2 years and older. Use for patients following a bone marrow transplant was anticipated when the drug was approved in 2005.
From http://www.pharmexec.com/pharmexec/article/articleDetail.jsp?id=185693
Although Exjade was primarily tested on patients with thalassemia, it is also indicated for others who need frequent transfusions. Patients with sickle cell disease and hemochromatosis, a hereditary disease in which the body absorbs too much iron from food, also need iron chelation therapy, Mackenzie said. It could also be used after transfusions following bone-marrow transplants, Bridges added.
As Narendra mentioned, bloodletting or phlebotomy, is often used in post BMT patients who have high ferritin levels. It has been shown to be an effective method of lowering ferritin levels.
From http://www.bloodjournal.org/cgi/content/full/90/3/994
In the 41 treated patients, adherence to protocol was only 72% ± 23% despite treatment being designed to maintain an almost completely normal life. Psychological rather than medical difficulties were encountered. No cases of graft failure, prolonged anemia, or protein depletion were seen, while it was possible to achieve normal liver iron concentrations (Fig 1). The speed with which this can be accomplished will also be affected by growth rate, natural low intensity iron chelation, variability in iron distribution due to BMT, and variability in iron absorption over the years. This study clearly shows that a moderately intensive phlebotomy program is safe for thalassemic patients after BMT. Other reports confirm the feasibility of regular phlebotomy after BMT...and this form of therapy is likely to be much safer, cheaper, and more widely applicable than alternative iron chelation therapy.
One factor that will affect how much blood can be taken is how high the Hb level is maintained. If it is towards the anemic side, it reduces the amount of blood that can be taken at one time.
Khalifa, Dr Javed will be able to tell you if they have experience using exjade with post BMT patients. If the chelation route is taken, it may be much more desirable than desferal.
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THANK YOU Andy for al this exepelnation and i thing to make bloodletting or phlebotomyfor the patient who he have BMT from a donner who he have THALASS.MINORE (like my son his donner is his sister who is thalass. minore) the Hb normally for this kind of PpL who have thalas. minore not go more than 12.5 some time 13.5 .. on my oppinion :huh i think Dr javed he will use either desferal or exjade :dunno any way it's not really high .. i will wait until next check up :( and see what will happened
khalifa
state of kuwait