New to Exjade

Hi everyone...i'm new to this site (but not to the MSN one) and just wanted to ask about anyone who has started exjade treament about their experience so far.

I'm 18 years old, live in Sydney Australia and have been on exjade for approx 3 months.

I also wanted to know if anyone has been on exjade, but it hasn't worked for them and have had to return to their old treatment cause i'm worried that this might happen to me since my doctor had to put me on a higher dose since my ferritin went up tp 4000 (its since gone down with the new dosage)

Thanks,

Stacey

Hi Stacey,

Welcome to our new home.   

I started Exjade about 4 or 5 months ago, and it's been working well.  I had some stomach issues in the beginning, when I was taking the medicine in the morning, but those symptoms went away when I started taking it at night instead.  Also, I ended up with a really bad rash in the beginning, but it went away about 10 days later, and I've been fine ever since.  I don't have anymore problems with it. 

My ferritin has been slowly decreasing, but not as much as I'd like it to.  I think I just need to give it more time.  Try not to worry about it not working for you.  It will just give you added anxiety that you don't need.  Most people do really well with Exjade, so the chances are good that it will work for you.  Just continue taking it as often as your doctor prescribed it, and give it some time.

I hope it works out for you.  If you have any questions, please don't hesitate to ask.   :hug

What did you do to take care of the rash?

The rash usually passes in a week to ten days.

Thank you for the sugestion to take it at night it really helps.  I had quit takeing it because of it bothering my stomach(which hasn't been right since b4 they took my gullbladder but that story is in another post).  But After reading about how you take it at night I started doing that and it is so much better!!!!!

As far as ferritan levels going up my hemotologist had told me that that might happen when I first start takeing it regularly because the medicine is pulling out the stored iorn to remove it and so it is in circulation which may result in a higher blood feritin. 

I am allergic to desferal and have been on L-1 on and off for years.  But when I found out about exjade being fda approved I asked about it and now I'm on it.  The L-1 (ferriprox) was alot easier to take what I've read has said that exjade is more effective in removeing iorn and I figure if it's fda approved its got to be better for some reason especially since L-1 has been "in study" for so long.

Desferal is not a choice for me but if it were that would be my choice since it has been around the longest.

If anyone has any info regarding L-1 v/s exjade on saftey and efficacey and long term use please let me know.

 

Hi Mei Ren,

I was wondering that since you don't go for transfusions then why are you into chelating iron?

Is your Serum Ferritin increasing even without transfusions? Normally this should not happen if you are not transfusion dependent?

Am I right? Can anyone clarify this?

Take care, Peace!

First, they both have the iron buildup from years of transfusions. Second, because their Hb levels are far below normal, their bodies will absorb far more dietary iron than needed in an attempt to furnish iron for the new blood cells being produced, just as it happens in many untransfused intermedias. When Hb is so low, the bone marrow goes into a state of overproduction and the gut can absorb iron at a rate up to 100 times normal. That can add up to a lot of iron and is the reason why a low iron diet is highly recommended.

Thanks for the great info Andy!

Hear that Mirracle sisters!

You can reduce your iron absorption (hopefully Desferal too) with just taking care of what you eat.


Take care, Peace!

Hi everybody,

i want to give a short introduceing of  myself. I was invited by christine to join this forum.
Im 34 years old and thal major. Congratulation for this nice helpfull site.

Sajid, it's not so easy to keep away from iron in our diet because moste things contains iron. Its good to know what contains the most iron (liver, red meet, cereals....). To reduce iron absorbment its good to drink black tea during meals. Also calcium (in milk and chees...) inhibit iron absorbment. Vit C is good to take far from meals (2 hours befor or after meal) because it increase enteral iron absorbment. It's also good to take 250 mg Vit C 30 minutes after starting desferaltherapie because it helps to eliminate more bodyiron.

Hope it bring some light
Gabri

Hi Gabri,

Welcome to the family!

Thanks for the info. We had a good discussion on this at http://www.thalassemiapatientsandfriends.com/index.php?topic=113.0

Check it out. I hope you find it usefull!

Take care, Peace!

GABRIELLE!!!

Welcome! :hug

I was wondering when you were gonna join us  

I hope all is well with you,and please do read my posts regarding Lauryns progress (or lack there of with her hemoglobin dropping)

 

Cheers  

Christine