What's your ferritin level?

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Offline jzd24

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Re: What's your ferritin level?
« Reply #30 on: September 01, 2006, 04:48:27 AM »
Miaki,
     I was wondering if you have any problems such as shortness of breath, fatigue or heart palpitations?  I hope things will get better for you, and you will be able to knock that iron level down. You can do it!   :cheer     
     Sometimes in our lives it's just really difficult to take care of ourselves. We get so busy, or we are taking care of children or others we love, or we get so worn down being ill that we just can't deal with any more.  I hope things work out so you can focus more attention on yourself and get that iron OUT! I understand though that sometimes it seems impossible to do. 
    Good luck - I am sending you positive energy thoughts.   :love    Jean

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Offline Smurfette

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Re: What's your ferritin level?
« Reply #31 on: September 01, 2006, 07:27:13 AM »
Miaki

Dont dispear all will come good of it...Just persist...I just found out my latest ferritin levels and they are a low 157...

Its never been that low for me never...So this is the biggest milestone for me...I have been told to stop using L1 for some time cause its alittle too low...

But it feels great to have a ferritin this low...

I know how you feel...Just keep up your good work...

Take care

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Offline Andy Battaglia

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Re: What's your ferritin level?
« Reply #32 on: September 01, 2006, 05:46:36 PM »
Smurfette,

Way to go!   :thumbsup


You are an inspiration to every thal with your hard work and determination. You've worked hard to get your ferritin down and to get your body into good shape with regular exercise. I hope everyone is paying attention.
Andy

All we are saying is give thals a chance.

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Offline sahil

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Re: What's your ferritin level?
« Reply #33 on: September 03, 2006, 06:38:21 PM »
Hi to all,
          I had undergone Splenectomy in the year 2005 March and in june my ferritin came 9200 but after taking regular Desferal and Kelfer i got my ferritin down to 2510 in July 2006.
My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.

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Offline Miaki

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Re: What's your ferritin level?
« Reply #34 on: November 10, 2006, 10:54:17 AM »
Greetings to all,

Well I have come with an update on my ferritin levels. Since writting to you in my last post dated 31st August 2006. My ferritin levels went up to 8200 around there and now with my latest reading I have managed to get them down too 4200 Yihaaaaaaaaa  :cheer :cheer :cheer :cheer

Still,  I have some work to do to get them way back down to under 1000 but I'm proud of myself getting them down to this. I think we all should be proud of ourselves for trying to maintain low levels. It's hard generally speaking to maintain a job, family and our social side of things and to be able to maintain the health reagime that is required for patients with a chronic illness I think we should all give ourselves a pat on the back for doing so well.

Also some other excitting news that I am starting Exjade this week. (stopping L1 and Desferal) A dream come true after doing my pump for the past 29 yrs ......I hope ALL patients around the world get their dream come true soon.

Love Miaki

ps: @ jzd24 you had asked me if i suffered any shortness of breath, palpatations and fatigue. I had noticed I was short of breath when I would start walking but once I got my breathing into a pattern I was ok. I never really had palpatation the odd one or two maybe once a year and fatigue yes I did but only more so after I suffered with glandular fever back in 2004. However at times I did feel over tired but again I put it down to working, looking after a family and doing the usual thing a parent does. Also I noticed it more 2 days prior to my blood transfusion.

I was advised by my cardiologist to do a sleep study which I have done so. Waiting on results for this. Also he put me on lasixs once a day to get rid of some of the excess fluid I retain at times. Apart from that all is doing well.

Hope this helps. 

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Kathy11

Re: What's your ferritin level?
« Reply #35 on: November 10, 2006, 11:25:18 AM »
Hi Maiki,
I am happy for the break you are getting ,you deserve it.It's good to read some good news.
 Kathy :clap :clap :clap :clap :clap :clap

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Offline Miaki

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Re: What's your ferritin level?
« Reply #36 on: November 10, 2006, 11:40:17 AM »
Hey Kathy

Thanks so much hun. And good to see you here  :hug :wink

Love Miaki

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Offline §ãJ¡Ð ساجد

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Re: What's your ferritin level?
« Reply #37 on: November 10, 2006, 11:59:06 AM »
:party :party :party :party

Keep it up, I mean down ! :thumbsup

:party :party :party :party
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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Offline dani75

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Re: What's your ferritin level?
« Reply #38 on: November 10, 2006, 01:35:49 PM »
my ferritin level is ca. 150...
every day is a new day ...

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Offline dani75

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Re: What's your ferritin level?
« Reply #39 on: November 10, 2006, 01:43:25 PM »
3,0 g Desferal... 7 day/week ... in 10 hours with  my pump...




every day is a new day ...

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Offline dani75

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Re: What's your ferritin level?
« Reply #40 on: November 10, 2006, 01:58:47 PM »
ist my ferritin level to low?  ??? :huh


every day is a new day ...

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Offline Andy Battaglia

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Re: What's your ferritin level?
« Reply #41 on: November 10, 2006, 04:04:02 PM »
Your ferritin level is low enough to consider cutting back on the desferal. 7 days a week may be more than you need right now.
Andy

All we are saying is give thals a chance.

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Offline Eponine

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Re: What's your ferritin level?
« Reply #42 on: November 20, 2006, 04:14:10 PM »

Well I have come with an update on my ferritin levels. Since writting to you in my last post dated 31st August 2006. My ferritin levels went up to 8200 around there and now with my latest reading I have managed to get them down too 4200 Yihaaaaaaaaa  :cheer :cheer :cheer :cheer

Still,  I have some work to do to get them way back down to under 1000 but I'm proud of myself getting them down to this. I think we all should be proud of ourselves for trying to maintain low levels. It's hard generally speaking to maintain a job, family and our social side of things and to be able to maintain the health reagime that is required for patients with a chronic illness I think we should all give ourselves a pat on the back for doing so well.

Also some other excitting news that I am starting Exjade this week. (stopping L1 and Desferal) A dream come true after doing my pump for the past 29 yrs ......I hope ALL patients around the world get their dream come true soon.
 

Hey Miaki
Really glad for you! Am trying to bring my ferritin level down too. Mine's like 4000+. It has come down in the last few months. Really struggling with it. It's amazing how you are able to juggle with SO many things at a time and still so faithful with the pump. You are my idol. Exjade here is still TOO expensive. Can't afford. Let me know how the Exjade thing goes.

Eponine

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Offline howard

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Re: What's your ferritin level?
« Reply #43 on: November 24, 2006, 01:59:35 AM »
Hi I’m also from Singapore. The latest test that I went for my ferritin was about 700 and I am working to keep it down to less than 300

I am currently on combination of desferal and Defripone. Exjade is not yet avail in Singapore and heard from my doctors that it would roughly cost us $4k per month if we go for Exjade.

Even Desferal and Defripone in Singapore are expensive drugs and surprisingly Defriprone is not a subsidized drug. We are given very limited subsided in our medication and monthly transfusion.

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Offline Eponine

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Re: What's your ferritin level?
« Reply #44 on: November 26, 2006, 08:18:28 PM »
Hi Howard

Good to hear that your ferritin level is rather low. Yes, Exjade is still not really approved in Singapore although I do know of a few using exjade already. It does cost a lot. About $2k or more a month and that's only for a 14 yr old. I can't imagine with my age and ferritin level and the amount of blood I get monthly how much exjade would cost me.
I tried Deferiprone but now stopped because I had a really bad reaction which left me in the hospital with 2 surgeries for 2 months. It is not surprising that Deferiprone is not subsidized because according to the govt, we already have desferal which is effective in iron chelation, there is no need for Deferiprone. But we are working to get it approved as a standard drug so that govt can subsidise it. We want to prove that Deferiprone is very useful in the chelation in heart and that most of thals deaths are because of heart failure. I already know of 2 in a short 4 months in the past year in Singapore.

 

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