Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: mel on May 18, 2008, 08:04:29 PM
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hi their people, im from the uk im new to this site :rolleyes
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Hi mel :
how r u ?. Welcome to the thalassemia patients and friends ........ i hope that u wil find ur anwers here and this forum will helpful for r u ........
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hey thanks for the reply
abit about me.
im a 24 year old female from london in the uk. i suffer from thal major, and im now diabetic.
can i say, for all you thal major sufferers, if you have the treatment available, then use it, dont make the mistake i made. thal is treatable, and if you treat it you wont suffer from other irreversible illnesses.
my heart goes out to all of you, whether a sufferer or somebody who has lost some1 through 1 illness or another.
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Hi Mel,
:hithere welcome on the forum, i know it's very hard,but as Andy told you in another post aggressive chelation can save you,what kind of chelation are you using and how often.
Wish you the best of luck. :goodluck
ZAINI.
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hey zaini , im useing desferol 7 days a week, i also go for my blood transfushions every 4 weeks !! my iron is so high at the mo so my doctor wants me to have a line in my chest so i can do my desferol through that as my tummy is very saw from the needles !!!! hopefully i will get rid of te iron if i sick to medication !!!! :rolleyes
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Hi Mel,
Welcome to our site! I wish you good health and hope we can be a source of strength for you!
Sharmin
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Hi Mel,
Has combination chelation using desferal and ferrirpox (L1) ever been considered? It is the fastest way to reduce iron overload.
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hi andy
i havent been given any alternative to desferol. i am due to have a line in my chest soon to use with a baxta. i have been told that a line gets straight into the blood, where as using a thalaset it goes through the tissue and isnt as effective.
i will be using exjade once my heart is in a stronger state. at the moment its working at 50% efficiency.
i will ask my doctor about this treatment you are speaking of, and she what she says.
thanks for the reply
ps, i have just started doing 2g's over 20 hours
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Hello and Welcome.
As suggested by Andy, you should seek advice re. using L1 and Desferal as a combination therapy. L1 is very effective in chelating iron from the heart.
Thanks
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Hi Mel,
I'm sorry to read what you're going through. I know our tummies can't take too many needles without a longer gap for the wounds to heal.
Have you tried using your thighs as well? Try it while you wait for the port to be installed. I use 4 spots on my belly and 2 spots on each thigh and rotate them while alternating between the leg and the gut. By the time one place gets it's turn to face the needle (after 7 sessions) the spot is completely healed and I hardly even notice where I had last put the needle in that spot. :)
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Hi mel :
i :agree to Andy . The combination of Ferriprox and desferal realy work's fast .......it's my personal experience ......... best regards
nice friend
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Hi Mel,
I would also strongly suggest that you try combination therapy,it works wonders,specially L1 or Ferriprox is very good for removing iron from heart,one thing you have to do is test you WBC's every week while taking ferriprox,but i think it's better then having a chest line,and while you are going for transfusions every 4 weeks i think the duration is good,and combination therapy will hope fully work for you,ask your doc about that.
Good luck.
ZAINI.
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hey zanie, andy, i had an opointment today 4 a blood test as im now taking ramiprill for my heart i have to have an extra blood test to check my kidneys each month, while i was their i asked my doctor about the L1 everyones bein telling me about, i found out that their the tablets i used to take 7 years ago!!! i started taking them but couldent hold them down each time i took 1 i would vomit it back up !!! i tried them 4 a few weeks but jus made me very sick, im waiting to go on the xjade but have to get ride of most of the iron b4 i c an start it !! jus wondering if anyone else was sick of the L1 tablets ????
thanxs guys duno wot id do with out ur advice !!!!!!!! xxxxxxxxxxx :wink
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Your reaction to L1 is very common when doctors act like arrogant know it alls and refuse to use common sense. When L1 is started on a low dose and the dose is gradually raised to the full dose, that reaction is very rare. When doctors start a patient on a high dose right from the start, patients often have many stomach problems and end up stopping L1. This has happened to many patients in the Maldives, keeping life saving chelation out of reach. I advise any patient beginning on any new drug, including Exjade to start low dose and work up to a higher dose. Patients starting Exjade have very few reactions when low dose is used at the start. Those starting with a high dose of Exjade have significant reactions at first.
Maybe this concept is difficult for the medical school trained know it alls, but for almost any drug that is known to give reactions, starting at full dose is a bad idea. Gradually introducing these chelation drugs into a patient's system is a much better idea. This is not based on years of medical school, but rather on years of talking to hundreds of patients.
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hi andy
wen i was givern the tablets i was told to take 8 a day !!! i took 1 at first but couldnt hold 1 down at all!!! ????
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Hi Mel,
i also had that type of reaction when I started. what I did was to reduce the dose initially and take it during my meal not afterwards. i also took it no later than 6.00 pm with food in the evening making sure that i did not go to bed for a while later.
I was supposed to have been on combination but didnt really use the desferal as I should but guess what my ferritin is now down to 471!!!!! Woo Hoo!!!!! Finally, I was getting depressed as sometimes it felt like it would never ever drop!!! It has never been so low before.
Combination is the best treatment especially when you are overloaded, I am living proof!!!!
So keep with it my friend, we are all in this together
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WOW B Thal Gal
:yaaaaaay :yaaaaaay :congrats :congrats :hi5girls :hi5girls
It's quite an achievement,i wonder when zainab's ferritin would be that low :sigh
Mel,
i think you should give L1 another chance,it was 7 years ago,start with a single tab a day,then gradually increase the dose.
ZAINI.
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Zaini,
I was questioning that it would EVER drop as it seemed to stick at one point. But it did and it WORKS!!!!! YAY!!!!!
I have also now been told that I will be able to get the Ferriprox here in canada legally!!!!!! Another plus for me!!!!! YAY!!!!!
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Congratulations B Thal Girl!! I am so happy for you!
Your accomplishment took a lot of patience and commitment and it is inspirational to the rest of us.
We are also in Canada, we have not used L1 - I wonder if they will recommend it to us in Oakland. I also wonder
if Exjade is an option for my son.
I wish you continued success in your treatment!! Keep up the excellent work!!
Mel, I hope this method will also work for you!
Sharmin
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That's awesome! :clap :yahoo