EXJADE

HAPPY NEW YEAR everyone!

Just wanted to touch base with my situation.

I am a thal intermedia but have only had one transfusion in my life when I had my son 6 yrs ago via C section.

In April 2010 I had a liver MRI and showed a ferritin level of 1450..my Dr started me on 1250mg of Exjade in June.

Dec 2010 I had another liver mri which showed my ferritin at 450..the Dr's are thrilled and dropped my dose now to 1000mg of Exjade.

I have tolerated it very well..I take it about an hour after dinner as my Dr said that would be fine and prevent any stomach upset. I have had no issues other than its a pain in the butt to take every night.

My biggest fear is all the negative stuff I have read online about the toxicity and death from Exjade,,

I go in for blood work every 4 weeks...

I guess I just need some reassurance

Hi Joanne,

I would think your Exjade use will only be temporary, although it may have to be repeated from time to time to keep your iron down. With a ferritin of only 450, you probably won't need to chelate much longer, as long as the liver MRI shows no deposits. You won't be on long term high dosage, so you shouldn't have anything to worry about. Since your iron load is caused by absorption from food, I would suggest drinking tea with meals, as it helps inhibit iron absorption and is also a mild chelator. Green tea extract can also be taken as a supplement and has a stronger chelation effect than drinking tea. There is also a supplement called IP6, that is made from the bran of grains and is very safe, that is also a mild iron chelator. Avoiding citrus and other vitamin C foods with meals can also reduce how much iron is absorbed. It is better to take citrus between meals so the vitamin C in it doesn't cause more iron to be absorbed. Reducing the amount of iron naturally can help you avoid or at least prolong the periods between Exjade usage.

Andy, why was her ferritin level so high? was it because of thalassemia? should thal minors also get liver MRI done?

Joanne is thal intermedia but does not normally transfuse. Her Hb is lower than what a minor would experience, and the lower the Hb level, the more likely that there will be excess iron absorption from diet. Most minors will not experience this, as their Hb level is higher and it won't set off excess iron absorption.

My HB was 85 and in Nov it was 99...It barely ever goes over 100..

would the Exjade cause it to drop more?

Chelation shouldn't cause the Hb to drop. In fact, free iron in the blood can cause damage to the red blood cells, so removing the iron with chelation should extend the life of your RBC's.

If anyone knows of anything specifically different about Exjade that could cause a lower hemoglobin level, please reply. I will mention one thing but this happens in less than 1% of patients. Exjade can cause gastrointestinal hemorrhage and this would cause blood loss, leading to lower Hb levels. This is not common and I think there would be some indication if this was happening.

You are right Andy,

I know two thals who have faced gastrointestinal hemorrhage - one of them, in fact, went through surgery to mend her stomach and the other just stayed a few days in hospital. Apart from that, I know many thals in my unit who have gastrointestinal problems and have not mentioned it as they weren't aware that exjade can cause that. Generally speaking, gastrointestinal problems due to exjade are many and may vary from light(stomach burns) to very serious(gastric perforation -if I use the right term).

Lena

funny I was off Exjade for 3 weeks and just went back on 3 nights ago and I am really feeling the heartburn type pain! Is it ok to take a pepcid?

I dont think I had that the first time around..thats why my Dr told me to take it on a full stomach..

I had that same burn starting from stomach and going up  when on exjade and my doctor told me to take a stomach pill (nexium) first thing in the morning that covered me all day long and this really solved things.

Lena

Exjade is well known for stomach and intestinal issues. Pepcid is OK. They do say to avoid antacids that contain aluminum, so steer clear of those.

Zantac and Lactaid are also recommended to take with Exjade.  Along with stomach burn do you all have loss of appetite as well?  I didn't know about Nexium, I will ask Lil A's doctor because Lil A has very little appetite.

Sharmin