Poll: Which iron chelator do you use?

 


Nah, if you need me, I'm here.   

I am on Desferrioxamine TRYING to do it 4x a week. Now that I've got the Chrono, which is much smaller than the Graseby, I will use it for over 24 hours or more, carrying it around with me to work, etc. It's more effective and I don't have to prick myself so many times which after so many years, is still very traumatic for me.
I did try to go on L1 / Ferriprox early last year but came down with very serious agranulocytosis which I spent weeks in ICU and many more in hospital and almost took my life away for. My case was presented at the TIF conference in Dubai. One of the poster presentation.
Now that I've fought for my life back, no way am I goiing to go back to L1 although I would love to have an oral chelator that works for my heart. I'm very jealous of those who can go on L1 and Desferal because it works both on heart and liver. My ferritin level is as high as 5000+. It used to be higher! My MRI shows that I've got moderate liver overload and mild heart. I'm scared and am trying to do my desferal as much as possible becuase that's my only option to keep me doing the things I want in my life for now.

Yes, that is definitely the best feature!  I wouldn't care how big those pills were, even though I gag easily.

If you cant swallow big pills then you can just break open the capsule and dump all the powder into a spoonfull of honey, the powder by itself is extremly bitter so dont try it.

While your at it you can also have brandy with it ;) I am kidding

Oh my God, I'm so sorry to hear that happened to you, Eponine.  I'm very happy to hear that you made it through that alive, though.  I'm glad to have you here.   

I would love to go on an oral chelator myself, but I'm willing to hold off until I find there are no serious complications.  I'm hoping that Exjade is showing some promise out there.  Have you talked to your doctor about that one?

I have the Crono also, and I adore that pump.  It's so much better than the Graseby, and much smaller like you said.  I still get lumps, but they aren't as bad as I used to get them with the Graseby.

Have you talked to your doctor about your high ferritin level?  Would you ever do any intravenous Desferal therapy to get it down some?  I'm not sure what the protocol is over there, but usually when ferritins are really high over here, the doctors will tell us to do extensive IV therapy through a mediport.  I'm thinking of getting my mediport put back in, but I'm not a big fan of them, as I've had two already.  One had a severe infection, and the other had a clot.   

I know what you mean about being scared.  I feel that way also, and try to do my Desferal as much as I can, but I find myself slacking at times.  I try to at least put it on 4 days a week, but it's not good enough. 

If you ever need to talk, or vent, we are always here for you.   :hug

If you cant swallow big pills then you can just break open the capsule and dump all the powder into a spoonfull of honey, the powder by itself is extremly bitter so dont try it.
While your at it you can also have brandy with it ;) I am kidding

LOL I think I'll try the brandy, Ashish.   

Hi Danielle

When my wife was in India, she was taking Kelfer. Good stuff. Brought her Ferretin down from 950 to less than 200. She did not have any side effects. She has not had to take any since she has been in the US.

She was transfused 5 weeks ago and her Hb is 9.8 right now and Ferretin at 400. We go back in 4 weeks to have the next round of tests. She enjoys tea with her meals. Tea slows down the absorption of iron from food.

Will keep you posted.
Regards
Bharat

what i am hearing is that exjade/ICL670 is not effective in removing iron from the heart. is there anybody on this site who is/has been on exjade/icl670 and has measured their cardiac iron level using T2* both pre and post using Exjade/ICL670? How were the results?

In a report issued in December and reported on the CAF website at
http://www.thalassemia.org/bodies/body252.php
the first clinical evdience is given that exjade does remove iron from the heart in humans.

"In an analysis of 22 patients with thalassemia (16) and anemias (6) receiving Exjade 10-30 mg/kg/day for one year in a clinical trial, mean MRI T2* scores improved from 18.0 milliseconds to 23.1 milliseconds (p=0.013) and correlated with significant reductions in liver iron and serum ferritin, both measures of body iron stores. T2* is a cardiac imaging test that reflects the iron content of the heart. A T2* score of less than 20 milliseconds is considered a signal for excess cardiac iron. As cardiac iron burden is reduced, T2* score increases."

These are early studies and the patients currently using exjade are the bigger trial group. Hopefully, we will soon hear more about this. It was unsettling that at the conference in Dubai, we could not get any commitment from one of the doctors conducting trials about exjade's effect on heart iron, other than it had worked in gerbils. Although he felt very sure that the positive results would follow in humans, he could not tell us that they had any data to prove it yet.

Danielle:

I probably waited longer than I should have for the release of Exjade, which was December 1, 2005 in Ohio. My ferritin was 3,421 that day. I was doing phlebotomies every three weeks to reduce the iron instead of using Desferal. However, the phlebotomies were not that effective. My hematologist was campaigning to get me on Exjade for several years. I filled out the paperwork on the day it was released and it took about a week to get it through EPASS. They Fed-X it to our house.
 
I have experienced relatively few side effects. I have experienced a little bit of rashing, however it is very minor. I have had some abdominal pain and diarrhea. Again, this is not severe but the abdominal pain can be distracting. For me, this is easy compared to intravenous Desferal. I did that for about two years until my level dropped to normal levels and then did the phlebotomies to try to maintain it.
 
I am taking 1750 mg per day. (The dosage is calculated by weight.) The 500 mg tablets are a little larger than an antacid and the 250 mg tablet is about one-half of the size of the 500 mg. They cannot be chewed but must be dissolved in orange juice, apple juice or water. As far as the taste, I like it much better with orange juice. Apple juice is ok. I was out of juice for several days and had to mix it with water. It wasn't horrible but it was a little hard to swallow, much better with juice.
 
Exjade must be taken one-half hour before eating. I have found with cold orange juice it takes about one-half hour for the tablets to dissolve. It takes a little planning to do this in the morning before I go to work. Even though it is not as convenient as taking a pill, again it sure beats intravenous chelation.
 
As I said above my ferritin was 3,421 on December 1, 2005. I started the Exjade on December 9, 2005. On January 11, 2006, my ferritin was 2,042 and on February 8, 2006 it was 1,720. In two months, it has dropped almost half and I feel much better.
 
I am beta thal intermedia with an Hb at 9.0. I do not receive transfusions so my increase is a lot less since I am not transfused.
 
It is very expensive: $5,000 per month. My health care provider negotiated that down to $3,700. Fortunately, my health provider covers all the cost except for my co-pay.
 
Barry

Barry,

I was curious about the phlebotomies. While blood-letting is the normal treatment for hemochromatosis, I have never heard of it being used to reduce the iron overload in thalassemia. Have you ever been tested for hemochromatosis? You mentioned in a post on MSN that you are a one gene thal. With your symptoms, it might be possible that something else is working in combination with the thal gene as in the case of HbE beta thal, or lepore thal. If ever a case demanded further testing, it is yours. And I hope with your success with exjade recently that you will be able to avoid anymore bloodletting.

$5000/month for Exjade! Wow! It's a shame we live with a system that is set up for drug companies to milk insurance companies for as much as they can. Rah, Rah capitalism and all, but what about the patients? And does anyone have any idea what exjade will cost outside the US? This drug has so much promise but what good will that do if the price is out of the reach of most thals? Anyone from Novartis care to field that question?

Andy:

When I talked with Eva Chin, she also mentioned that see has never heard of a thal patient doing phlebotomies for ferritin therapy. However, it does work to reduce the ferritin since the blood is discarded before the blood cells break down. My phlebotomies were for my thal related iron overload.

I first heard about an oral chelator in 1988. In 2005, I received Exjade. It appeared that it would be released sooner but was held up due to Vioxx and Celebrex being pulled off the market. My doctor was hoping to maintain my ferritin until it was released. With what I know now, I would have asked to be put back on Desferal until the Exjade was released. I was taking Aranesp but my body could not overcome the blood draws. When I was released from the hospital in November, I did my follow-up visit and told him that I would not do anymore phlebotomies. Fortunately, Exjade was released two weeks later.

I spoke with a lady from Aetna, our health care provider. Her brother has thal and does the phlebotomies. I gave her the information about Desferal and Exjade and suggested that he contact the CAF.

We all have our own views on politics but I think that there might be other forums to would be better to express our views. The system is definitely broken but it would be helpful to see suggestions on how we can campaign to reform the system. Do you have a name and an email at Novartis that we could all contact? Since, I am new to gaining information, are there ways that we can campaign our political officials to make our voices known? Let's use our energy, since we don't have an abundance of it, to make our voices known.

Thank you for our efforts to keep this forum active and the new format is great. The inteface is much easier to use. Kudos!!

Barry

Hi, Barry.  Nice to see you here.   

Thanks for the information.  It was very helpful.   

I must say, though, I'm very concerned about these phlebotomies, since Thalassemia patients are not supposed to have them done.  I have only heard of them being done on patients with Genetic Hemachromatosis, not with Secondary Hemachromatosis (by way of blood transfusions).  We don't have enough hemoglobin in our body to be getting phlebotomies for iron-overload.  It's way too dangerous. 

I hope you can find the correct info soon.   

[quote author=Danielle link=topic=54.msg194#msg194 date=1139750968

 I'm hoping that Exjade is showing some promise out there.  Have you talked to your doctor about that one?

Have you talked to your doctor about your high ferritin level?  Would you ever do any intravenous Desferal therapy to get it down some?  I'm not sure what the protocol is over there, but usually when ferritins are really high over here, the doctors will tell us to do extensive IV therapy through a mediport.  I'm thinking of getting my mediport put back in, but I'm not a big fan of them, as I've had two already. 

[/quote]

Hi Danielle
Thanks for being such a friend. I'm happy to be here too. I'm really glad to be part of the group here where we handle the real issues we are facing plus so much discussion and stuff going around. Really great to know so many other people in other parts of the world and learn how each country deals with Thal. I really feel at home here compared to the last MSN groups that we had.
My doctor knows the implications of such high desferal levels. She's nagging at me to lower the high levels but so far never mentioned about taking extreme measures. My ferritin levels went up because there was about 4 months during and post hospitalisation where I could not have desferal due to the anti-biotics I was taking. Apparently, desferal and anti-biotics cannot go together. Something like they reaction with the free iron or something like that. Anyone heard of it?
As for Exjade, I attended the TIF conference at Dubai where alot of focus was on Exjade where the general consensus from many people is that it has not been tested long enough to see results. Singapore has not approved of Exjade yet anyway, so I'll take a wait and see approach. No more scares after my experience with Ferriprox!!
What is the mediport all about? Would like to know more about it. Where is it attached? For how long?

Hi,
My name is Archie, and I wanted to get some opinions on the new ICL670 tablets. I'm thinking about starting on them as part of a trial here in Melbourne but don't know to much about it.
If anyone is taking the new drug your opinion is greatly appreciated

Hi Danielle
Thanks for being such a friend. I'm happy to be here too. I'm really glad to be part of the group here where we handle the real issues we are facing plus so much discussion and stuff going around. Really great to know so many other people in other parts of the world and learn how each country deals with Thal. I really feel at home here compared to the last MSN groups that we had.

Apparently, desferal and anti-biotics cannot go together. Something like they reaction with the free iron or something like that. Anyone heard of it?

What is the mediport all about? Would like to know more about it. Where is it attached? For how long?

You are very welcome, Eponine.  I'm always here if you guys need me.  :hug

I've actually heard of Desferal and antibiotics not being compatible, but as many times as I've been on antibiotics, I've never been told to cease Desferal until completion.  I would like to know what it actually does with the free iron, so if you or anyone happen to gather this information from somewhere, please post it for us.  I will investigate this as well, and if I find anything, I'll let you guys know.

As for the mediport, it's a small, dome-shaped device, that is implanted right below the skin in the chest (mostly), arm, or stomach, and is connected to a catheter that is tunneled through a large vein in the body, mostly the one in the chest/neck area.  This gives you direct access to a vein, instead of being poked with needles all the time, while trying to find a vein in the hands/arms/etc.  Once implanted, it can be "accessed" with a special needle, for intravenous infusions (blood, Desferal, antibiotics, etc), and then the needle can be removed when you are done using it.  The needle can stay in for up to a week, and then it needs to be changed.  A mediport can stay implanted for many years before it needs to be removed.  The majority of people needing long-term care have their mediports for 5-10 years, as long as they are infection and/or clot free.  Young kids usually need them changed sooner because of their continued growth.

Hope that helps.