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Author Topic: high ferritin level  (Read 31485 times)
Lena
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« Reply #150 on: September 20, 2010, 11:01:25 AM »

Good question Andy,

At first I'll say that I have not used exjade as monotherapy. I have taken it along with ferriprox and it worked, the combination definitely lowered my ferritin level at 68 from 113 - I am referring to the counts in order for you to get a clear picture of what I am saying. I have only used ferriprox alone as a monotherapy for a whole year and my MRI showed that it was not enough. Although it maintained my ferritin at a low level as well, the T2* liver worsened than the year before (though still clear). That made me reconsider ferriprox monotherapy and add exjade at first(lower dose) and then desferal after my decision to drop exjade as too risky(my opinion).

Andy, I agree with your opinion here for exjade potential side effects- a risk one does not take in low ferritin levels, at least I did not.

After much thought and consideration, I came to the conclusion that ferriprox is enough in low ferritin levels but with a slight touch of  desferal in order to keep the liver clear.And this seems to work. Of course, one can rearrange chelation program. You see, when in low ferritin levels you have the option to skip one or the other for some time. Let's say, you want to get some rest for a month or so-you drop desferal and then the next month you press harder. This is a choice you have when in these levels - although I would say that I have not applied this a lot - but then I am very disciplined in my chelation- another thal could do that.

I think that all chelators have the same effect on low fe levels, considering of course the effect each of them has on the organs. Exjade and Desferal mainly for liver - Ferriprox for heart. That's why combination therapy is needed even in low ferritins. Of course, this is not the case with the high ones. In high levels monotherapy is surely not enough.

In the end, I have never been comfortable with exjade since the beginning - that's why I dropped it in spite I hadn't had any serious side effects.

Lena

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Rehman
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« Reply #151 on: September 21, 2010, 09:31:56 AM »

Hello Dears

cane you tell me where cane i do  the MRI T2* becouse im living in pakistan and in pakistan this is not available .
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I AM  SUFFERING FROM THALASSEMIA  MAJOR.
Emby
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« Reply #152 on: September 21, 2010, 11:28:58 AM »

Thank you for the advice....much appreciated  !
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Manal
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« Reply #153 on: September 21, 2010, 04:41:09 PM »

Rehman

Is it an option for you to travel outside Pakistan?

manal
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Rehman
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« Reply #154 on: September 22, 2010, 08:58:24 AM »

thanks for reply manal yes i can travel every where in world just tell me country's and places of MRI t2*.
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I AM  SUFFERING FROM THALASSEMIA  MAJOR.
Manal
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« Reply #155 on: September 22, 2010, 12:01:26 PM »

Rehman

In this link there are some names of centers worldwide
http://www.thalassemiapatientsandfriends.com/index.php?topic=259.0

Also you can read in the section of'' treatment centers'' for more details
http://www.thalassemiapatientsandfriends.com/index.php?board=9.0

Since you have the option of travellig, i advice you to choose countries that have comprehensive treatment centers ( for eample Italy in Europe) in order to have a full assesment concerning your health and treatment

manal
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FarahS
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« Reply #156 on: October 06, 2010, 11:41:18 PM »

Hi.. I am a mother of two thal patients. I read in one of your past posts that you have used a combination therapy of Exjade and Ferriprox.I want to know if this is a safe combination..my kids r on Exjade at the moment and  their ferritin level is quite high..pl reply. thanks 
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usman
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« Reply #157 on: October 06, 2010, 11:49:21 PM »

hi komal ,Anday says absolutely right .
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i love 2 help thalassemia patient
Lena
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« Reply #158 on: October 07, 2010, 04:15:49 AM »

Farahs,

I have used Ferriprox- Exjade combination,  but as I am not a doctor I cannot talk about the safety of this combination. There are doctors who support this scheme, there are others who do not as -up to now- there  have not been any clinical studies about it.

Lena.
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FarahS
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« Reply #159 on: October 07, 2010, 05:34:35 AM »

thank you                       
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