Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Cari on May 18, 2011, 07:42:08 PM
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Hello Everyone,
I just received some info from our thal center in Atlanta. There is a lot of great info on it and I'd like to post the document but i just have a copy. Basically, talks about how exjade can be added to foods and even milk products. I've put it into a word document but it is inserted as an image so I'm not being able to cut and paste it. Any advice how to put it up so that you all have it?
Brochure talks about ------
THE PALATABILITY AND TOLERABILITY OF DEFERASIROX (EXJADE) TAKEN WITH MEALS, DIFFERENT LIQUIDS OR CRUSHED AND ADDED TO FOOD
Patricia Giardina MD, Stuart L Goldbeg MD, Joan Parkhurst Cain MD, Deborah Chirnomas MD, Jason Esposito, Carole Paley MD, Elliot Vichinsky MD
If anything i can type out the info and get it to everyone but it may take me a little time. Let me know if anyone would like me to email it to them..i can send over asap.
(The document is also attached below as a pdf file. It's a bit fuzzy but when I zoomed to 200%, I was able to read it clearly. It helps to rotate the document under View in your browser. (AB)).
(http://i71.photobucket.com/albums/i126/comicsetc/Reference%20pics/Exjadeinfood.jpg)
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Hi Cari,
You can modify your post and add the document as an attachment. Below the post you will see "Additional Options". Click that and you will see an option to attach a file. Browse your computer and select the file and post. It will appear as an attachment at the bottom of the post.
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Cari,
I just thought of another option. If the word document is all text, you should be able to select all, copy and then paste into Notepad. From there you can copy and paste it right into the post.
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From the foods tried, it looks like most food and beverages would be suitable for mixing with Exjade. Crushing the tablets also seems to have no negative effect. While the study was too small to draw any official conclusions, it is noted that all groups saw a drop in ferritin levels. It appears to be safe and effective to use whatever food or liquid that the patient chooses to take Exjade. I will also remind that splitting the dose into two and taking half in morning and half in the evening can also help to reduce nausea. It seems that the only really important rule is to take it daily. How and when you take it has little importance. I cannot justify telling people to take Exjade on an empty stomach. Take it with a meal if that works best.
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A link to this thread has also been added on our Facebook thalpal site. This is a significant development and should make life a bit easier for those dealing with Exjade stomach issues.
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Thank u andy!!! :hugfriend
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A link to this thread has also been added on our Facebook thalpal site. This is a significant development and should make life a bit easier for those dealing with Exjade stomach issues.
Hi !
I would really like to read this. Where do I find the thalpal site at Facebook? I have tried to find it, whit no luck.
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Our Facebook group can be found at https://www.facebook.com/home.php?sk=group_78504283219 or by searching thalpal in the search bar on Facebook. It has grown more active recently and we've had some very interesting discussions there.
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Thank you! Facebook is greate, and the same is this forum.
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Andy,
I think we should put the name of the group into the address,that way it would be easy to find,we can change it by going to www.facebook.com/username .
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Facebook doesn't allow that for groups as far as I can tell.
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I've been trying to mix exjade in pudding for lil A - it is really gritty and becomes an unpleasant texture...back to the drawing board...
I'm sure we'll all come up with something!
Sharmin
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That stinks...i hope we can do something with it to make it easier.
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For Lil Z,water is fine,but the relief is that now she doesn't have to wait to eat after taking Asunra,and if she has taken a meal,we don't have to wait for 2 hours to take Asunra.
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Hi ,
I cant read this here or on facebook. I s there another way?
Zahra
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Zahra,
Are you able to open the attachment at the bottom of the first post? If you can, increase the viewing size to 200% for better viewing. If not, you can download adobe reader for free at http://get.adobe.com/reader/
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what was the outcome of the trial in America for exjade in fooD? Would it be O.K. try it & does it slow down the need for blood transfusions?
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TREV
According to the uploaded study, you can mix food with exjade. But actually this does not have anything to do with the need of transfusion. It is only a new way to administer the drug, that is all :biggrin
Manal
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More info on this study....
http://www.clinicaltrials.gov/ct2/show/NCT00845871?term=exjade+AND+food&rank=1
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this is the article I meant to post. We will be starting exjade in a week and I'm sure I'll be looking for advice soon!!
http://www.thalassemia.org/index.php?option=com_content&view=article&id=502:poster-presents-results-of-exjade-food-study&catid=1:latest-news
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Cari,
Best of luck with exjade my friend.
xo
Sharmin
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Thank you Cari and Andy....i was very late in reading this great news.....I use to struggle to give my child medicine empty stomach early morning and then giving gaps before n after the medicine(Asunra). Now I can give the medicine anytime and with anything and that will ease out things a lot. Thank you once again.