Fed-up

Okay am seriously fed-up of my iron-chelation issues:

1) Desferal - either by pump or IV, give me WORST body rashes + my hand/fingers get swollen.

2) Ferriprox - increase my appetite, I start gaining weight.., and it gives me nausea/stomach-ache

Now option left is Asunra/Exjade.. I don't want my ferritin to increase.. shall I start Asunra =(?

Ayesha,

in my opinion the most certain thing is that if you start exjade as a monotherapy, your ferritin will go up. In my opinion again, the best ever combination therapy is ferriprox/desferal, with the best results ever.

Try to handle the side effects of desferal and ferriprox discussing it with your doctor.
Of course, it's up to you - this is only my opinion based on my experience.

Lena

  my suggestion is same as lena...

I think that Exjade is amazing. At first your ferritin may go up but it's a wonderful med for most people with bringing it down. I have never had such good ferritin levels in my life before Exjade. I was always in the 2,000 to 4,000 range with Desferal no matter how compliant I was and now after being on Exjade for a few years I am in the 400 to 600 range. It varies.

I had some issues with rashes in the beginning but I just had to decrease my dose for a bit and the rashes went away for good. I don't get sick or anything on it, although I know some people experience this. I definitely think you should give it a try, though.


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Danielle,

you certainly are an exception to the rule. Here in Greece people who start on exjade, turn to leave it in the end because their heart and liver T2* rates drop after a while - I, of course, am talking about exjade as monotherapy. It is, nevertheless, a solution when your ferritin does not come down inspite of your compliance with chelation when on desferal. But when your ferritin drops with a combination therapy, then you should stick to that. That is only my personal opinion, of course.

Lena

Hi Lena,

I was actually on a combo therapy for a while when I was doing both Desferal and Exjade and that is how I got my ferritin into a decent range before stopping Desferal completely. I do agree that Exjade may not be the best for everyone, but I don't think I am the exception to the rule, considering that there are many Thals who swear by Exjade and say that it has saved their life. I'm sorry to hear that it hasn't had the same benefit in Greece, but I do know that here in the U.S. it is used by many without issues. There will always be some people who do not benefit from  certain drugs and Exjade is no different. I'm sure Exjade is not going to work for everyone, but someone isn't going to find that out until they try it, if other chelators aren't doing the job.


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Ayesha....
don't say that.. try to look it in a different perspective, and be positive.. okay.

Love- Joyce!

My son's ferritin has dropped from 2000 to 280 for the period of two years. It fluctuated at first and continues to drop. He takes only Exjade. The dose is 33mg/kg. So I think that Exjade is working with my son, fortunately. The administration is very simple (I follow the ideas from this forum, thank you) that the taking time should be regular, i.e. I give him at 6:30 every morning with water not before or after, and he should finish as soon as possible. I am following Andy's advice that I reduce the dose to the maintaining dose. I hope that  my son will continue to benefit from it.
I wish everyone a successful chelation.

Souly

Really good to hear that souly, Hopely ur son will benefit from it for a long period.
 Keep up the good work!

Ayesha,

Seems that we are in the same ship

It's your choice what decision you make. But please know that Exjade can increase levels of ferritin for even a year before it goes down. But remember that when it goes down, it goes down very quickly.

Oh yes, while typiing this I eat tortilla chips. just because I took Ferriprox not long ago and it has brought me a feeling of hunger. That's the thing I absolutely dislike of it.

Warm wishes, D