What's your ferritin level?

hi!
thaks to all for encouraging me.i m trying my best to decrease my fe level more and more..
three years ago my fe level was 11000 and now i have brought it down to 748 with regular use of desferal and ferriprox....
i hope soon i will succeed to bring my fe level to 300 or 200..........
laiba mukhtar
take care

Laiba,


congratulations! You have brought it down from 11000 to 748 in three years' time, well, that is something to be proud of. Good work!
Of course, only combination therapy can bring it down so considerably.
When I started desferal-ferriprox combination I lowered it from 1500 to 45 within 5 months.

Lena.

Hi Gina,

How long have you been taking Exjade? Are you on the full dose yet? 30 mg per kg body weight is required to get the ferritin dropping. 5000 is too high so we need to give you lots of support to help get it down.

Ferritin should be checked every month, heart and liver MRI once a year to re-determine chelation therapy.Heart ultrasound once a year and once every six months when having heart problems, bones density measure every year, glucose test once a year.

That's the common practice here. Now if it is followed by all...that's something to be questioned.

Lena.

Hi Gina,

How long have you been taking Exjade? Are you on the full dose yet? 30 mg per kg body weight is required to get the ferritin dropping. 5000 is too high so we need to give you lots of support to help get it down.

I take 1500mg per day they said they are going to up my dose again soon but the max they will allow me is 2000mg per day which is 4 tablets. I know 5000 is to high however I have been non-compliant for a very long time and I just now decided to wake up and live. I have been through a lot of stress and hardship in my life and I gave up for a long time. Now I have decided to take the right path and not let my past effect me so hopefully its not to late and I can start feeling better. The Dr's told me I might have to go back on the desferral with exjade something I am not looking forward to but until ferriprox is available in the states thats what I must do.

I welcome any opinions and advice, Where I live I am the only Thal Major patient in the area and its hard for me because I have no support around and am so glad for sites like this...

Hi Gina,

If Exjade does cause you problems which force you back to desferal, you may be able to get Ferriprox through a compassion program. I know several people in the US who have been able to do that. Eileen at CAF may be able to help direct you if this does happen. You might also want to register with CAF. Hopefully, Exjade will do the trick and get your iron down. If at all possible, it would also be highly recommended if you could be seen at one of the Comprehensive Centers of Excellence in the US on an annual basis. They do a great job managing treatment programs and improving the quality of life of those with thalassemia.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

gr8 achievement PCG ....  r u same laiba who took pos in inter exams i read in dawn .. r u

ginacappo,

Keep up it up my friend,i am happy that you have decided to ''live'' cause you deserve it. We are all here to support you

manal

gr8 achievement PCG ....  r u same laiba who took pos in inter exams i read in dawn .. r u

Waleed,

Yes she did take position in her exams, you can see her pics in the gallery .

hi
waleed
yes i m laiba mukhtar(pcg12009) as zaini has told u.
actually pcg is my college PUNJAB GROUP OF COLLEGES i think i should change my title name
laiba mukhtar
take care

Hi everyone,
Hope everyone is doing well. I just have a few questions, Olivia has been on Exjade for about a year now she was started on 375 mg daily. After seeing Dr. Singer in Aug. 2009, she recommended Olivia take 500 mg 4x's a week and 375 mg 3x's a week. So since doing so Olivia's ferritin has gone up and down in Oct. 2009 her ferritin level went from a 1400 - 900. Great!!!! Now, at her last visit her ferritin was back up to 1400. Her dr. was saying that if this becomes a trend that we will raise her exjade to 500mg 7 days a week. I know that the ferritin level is not the only way to measure iron and her squid showed a level of 4.4 ( not really sure what that measurement means ) but I was told that was good. Ok so my question is Do we have to be worried about iron overload at this point? What does that actually mean? How is it diagnosed? Olivia's hospital is supposed to be getting in a MRI machine that will measure the iron in her liver and heart. Should she be checked every 6 months? 
Thanks So Much
Kathleen
PS >>> Livi is 5 yrs old and 40 lbs Does 500 mg sound right for her age and weight?

Hi everyone,
Hope everyone is doing well. I just have a few questions, Olivia has been on Exjade for about a year now she was started on 375 mg daily. After seeing Dr. Singer in Aug. 2009, she recommended Olivia take 500 mg 4x's a week and 375 mg 3x's a week. So since doing so Olivia's ferritin has gone up and down in Oct. 2009 her ferritin level went from a 1400 - 900. Great!!!! Now, at her last visit her ferritin was back up to 1400. Her dr. was saying that if this becomes a trend that we will raise her exjade to 500mg 7 days a week. I know that the ferritin level is not the only way to measure iron and her squid showed a level of 4.4 ( not really sure what that measurement means ) but I was told that was good. Ok so my question is Do we have to be worried about iron overload at this point? What does that actually mean? How is it diagnosed? Olivia's hospital is supposed to be getting in a MRI machine that will measure the iron in her liver and heart. Should she be checked every 6 months? 
Thanks So Much
Kathleen
PS >>> Livi is 5 yrs old and 40 lbs Does 500 mg sound right for her age and weight?

kathleen,
The amount does sound right I weight between 125-130 and my Dr. told me I can go up to 4 pills a day which is 2000mg. Livi is only 5yrs old I say she has a great chance of keeping her iron down. I have Thal Major and didn't start on any chelation therpy until I was 16 so she is good. I am 40 and doing well and our statistics were a lot worse back in the 70's and 80's Livi has so many more opportunities then the older Thal major's had years ago. Just keep doing what the Dr. tells you and always ask questions.

Gina

Kathleen,

The MRI on the liver (liver iron concentration by ferriscan) or the MRI on the heart (T2*) are done annually.

As for the dosage, the maxium dose is 30mg per kilo.

So assuming that she weighs 40 lbs (18 kilos), so her max dose is 540mg per day

Thank you for the info. Olivia has her next transfusion on the 23rd so I will have her labs back by then. I will kepp you posted. You know, I also asked her MD if I should watch her diet and limit her iron intake that way and she said no not at this time because itmay taken away some nutrients that she may need. Any input on that?
Thanks, Kathleen

In my opinion, iron from diet in negligible compared to that gained from transfusion (which is already taken care of through chelators). So you better give her body all the nutrients it needs to grow properly.

Also being transfused..... i.e having a high HB eliminates absorption of iron in the gut. In addition you can always give her tea with the meals

manal