Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: nick on March 13, 2008, 02:06:09 PM
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Hello Everybody,
My name is Nick and I live in the south west of england. Us thals are a rare breed down here! I have been on this site since August and found it very informative.
I'm glad to say that I am on exjade (for around 9 months now) after all those years on desferel.
Are there any members from the UK on exjade or am I one of the lucky ones?
Nick
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Hello Nick! Welcome! Glad you found this site very informative, it is afterall what we hoped for, to let more pple know about the disorder and to educate more patients and parents ...... as well. Just wanted to know are you a beta thal?
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Hi Nick and welcome,
I'm curious how your ferritin has done with exjade. Have you been able to keep the same levels as when you used desferal?
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Welcome Nick,
:welcomewagon
Sharmin
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Hi Nick,
Nice to see you posting.
Feel free to share your Exjade experience with us?
Do you get your Serum Creatinine and L.F.Ts checked regularly? How well is Exjade doing for you?
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Hi Nick and welcome,
I'm curious how your ferritin has done with exjade. Have you been able to keep the same levels as when you used desferal?
Hello Andy,
Thanks for your question. Well before I started on Exjade, I was on Desferel of around 1500 to 2000mg, around 4 times a week. 4 times a week you might ask. Well when I was treated at the Royal Free in London, they told me to start reducing the amount of times I needed to take it from 7 nights, gradually down to 4 nights because I was such a good colator (I think thats the term).
I was on this regime upto November 2006 and taken off desferel because I sustained a verbrae wedge fracture as a result of a car crash during that summer. My consultant decided to take me off desferel to give my bones a chance to heal. I was osteoporatic due to thalassaemia and the last thing I needed was this. Eventually, I went back on desferel after 10 weeks. Obviously the ferritin shot up, I think it went around 2000. Gradually it came down to about the 1000 level before I was switched to exjade in June 2007.
My ferritin on exjade initially went down for about the first 3 months to around 700. But since then, it has been creeping up and is around 950. Im on 625mg of exjade and this will be reviewed on my next visit. After looking at your site, I suggested to a doctor that maybe I should come off ascorbic acid - as this obviously helps to absorb most of the iron in the body! I don't know why I was on asborbic acid for so long - every since I started desferel as a young child. After coming back from London, I was told only to take it on those days I did not have desferel but for some reason nothing was mentioned when I switched to exjade.
Sorry for being a bit detailed. You know us thals when we start. we can't stop!!
Nick
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Hello Nick! Welcome! Glad you found this site very informative, it is afterall what we hoped for, to let more pple know about the disorder and to educate more patients and parents ...... as well. Just wanted to know are you a beta thal?
Hello Lyanne,
In answer to your question, yes I am a beta thalassaemic. Unfortunately, I am the only one in my whole family on both sides (say around 100+) to have it!!
Nick
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Hi Nick,
Nice to see you posting.
Feel free to share your Exjade experience with us?
Do you get your Serum Creatinine and L.F.Ts checked regularly? How well is Exjade doing for you?
Hello there,
Yes at the moment on a monthly basis. See my post to Andy on Exjade! Its refreshing no needles or pumps.
Nick
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Hi Nick,
I'm sorry to hear about your crash. I hope that you are fine now.
I suggested to a doctor that maybe I should come off ascorbic acid - as this obviously helps to absorb most of the iron in the body! I don't know why I was on asborbic acid for so long - every since I started desferel as a young child. After coming back from London, I was told only to take it on those days I did not have desferel but for some reason nothing was mentioned when I switched to exjade.
Well, Ascorbic Acid (or Vitamin C) is prescribed on "Desferal Days" because it mobilises the Iron stored in the organs to the blood stream where the increased availability increases the efficiency of Desferal as it has a short half life in blood and thus requires the most possible free Iron to chelate.
Vitamin C does not show any significant increase in the efficiency of Exjade and thus you can stop taking Vit. C. because just like you said that it increases the Iron absorption from the diet. Furthermore too much Vit. C (more than 250 mg) can cause the free Iron to move to heart.
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Hi NIck,
:welcomewagon Sorry for the late welcome ,but better late then never,right? :) do keep posting and sharing.
ZAINI.
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Heya Nick,
Welcome :)
Yes once we get started talking we never stop.... :rotfl :rotfl :rotfl
You said that you are osteoperotic.... With your car accident fracture did your doctor put on pamidronate infusions to help your bones?
Reason to be asking is that I had a T12 fracture 6yrs ago and I was treated for it with that and it healed...
:)
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hello nick,
welcome to the site,im sure you will find it very helpfull,sorry to hear of your car accident,hope your recovering well,im from sydney australia and have been on exjade also for a year and my ferritin has gone up & down & now up again im on 1000mg of exjade 7 days.But it beats needles anyday!
also just curious which hospital do you go to in London?
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Heya Nick,
Welcome :)
Yes once we get started talking we never stop.... :rotfl :rotfl :rotfl
You said that you are osteoperotic.... With your car accident fracture did your doctor put on pamidronate infusions to help your bones?
Reason to be asking is that I had a T12 fracture 6yrs ago and I was treated for it with that and it healed...
:)
Hi Smurfette,
Thanks for asking but no. I was taken off the desferel but I was on pamidronate a while back but have been on alendronate for around 5 years taking it once weekly orally and also take Vitimin D3 Forte on a daily basis.
Nick
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Hi Nick,
I'm sorry to hear about your crash. I hope that you are fine now.
Well, Ascorbic Acid (or Vitamin C) is prescribed on "Desferal Days" because it mobilises the Iron stored in the organs to the blood stream where the increased availability increases the efficiency of Desferal as it has a short half life in blood and thus requires the most possible free Iron to chelate.
Vitamin C does not show any significant increase in the efficiency of Exjade and thus you can stop taking Vit. C. because just like you said that it increases the Iron absorption from the diet. Furthermore too much Vit. C (more than 250 mg) can cause the free Iron to move to heart.
Thanks
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hello nick,
welcome to the site,im sure you will find it very helpfull,sorry to hear of your car accident,hope your recovering well,im from sydney australia and have been on exjade also for a year and my ferritin has gone up & down & now up again im on 1000mg of exjade 7 days.But it beats needles anyday!
also just curious which hospital do you go to in London?
Sydneygirl,
Hello and thankyou. I'm currently on 625mg everyday and I'm glad to free from needles. I went to the Royal Free in Hampstead for around 7 years before re-locating back to the south west of england (devon) to be with my family about 4 years ago. I'm not sure if I would ever go back to london as I would probably struggle to get funding for exjade as this is currently only done through local health authorities and not nationally.
Nick
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hi again nick,
i lived in london for awhile myself and went to UCH hospital in london and saw prof Dr Porter,he was fantastic and very knowledgeable in thal,your right he told me exjade is thru funding by local health funding.Take care,all the best.
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hi again nick,
i lived in london for awhile myself and went to UCH hospital in london and saw prof Dr Porter,he was fantastic and very knowledgeable in thal,your right he told me exjade is thru funding by local health funding.Take care,all the best.
Hello again sydneygirl, :biggrin
Strangely enough I was originally registered to go on the exjade trials at the UCH around 5 years ago. Can't remember off the top of my head the lady in charge, I'm not sure if I saw Dr Porter but have seen him at the odd UKTS conference that I attended - that's if I kept my eyes open :rotfl. I did all the tests i.e. eyes, ears, liver biopsy etc. Only to find I was disqualified from the trial because my ferritin then was too low!! :wah
Then again the best things come to those that wait.
All the best to you, sorry to hear about your brother.
Nick
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its a small world hey.....
when i went to the UCH in London i remember there was a male nurse called Ewan and he was good there another one called Lisa who now funnily enough is working at the hospital i go to here in australia,but dr porter was brillant & still is and he remembers things that u tell him & people from years previous.Thanks for your kind words nick about my brother also :)