Great News!!!

I got my ferritin levels a day ago and they are 202...SF that is....

I am down to 4 deferiprone tablets a day...No combination therapy for me...

I cut down from 8 tablets a day to 6 tablets a day and now 4...hopefully my ferritin can stay low and will cut down to more tablets... wishful thinking  ..

So everyone dont despair there is hope for all of you...Just do what you have to do and you'll get the results that you want to acheive...

Take care all..

 

Hi Smurfette,
Thats fantastic your ferritin is that low.It helps other patients from all around the world know it is possible to get it down so low and on an oral chelator also!
best wishes to you!
                                     

Wow!

That's great!

Dear Smurfette

This is unbelievable , you are an inspiration to all of us. I am really sooooooo happy for you and we are so proud of you. Congratulations  

Congratulations Smurfette!

Just curious - are your actual iron contents in your liver, heart etc also being monitored? 

Once again - I am very happy for you!!

Sharmin to answer your question!!!

Yes my LFT's are monitored all the time and they are normal...My liver iron isnt that high either!!!

I dont have any heart problems what so ever, I see a heart specialist every year and he is pleased with my results...


Here in Australia we do just about every test there is before going on Deferiprone..I am just one of the lucky ones that its worked so well on...Hope it does the same for most of you...


I am pretty much healthy!!!

Hope this has answered your question

Thanks

That's great! wish I could have your ferritin (LOL) well hopefully I'm also that sucessful in maintaining my iron... Great work! keep up the good work! take care!

Hi Smurfette, wow, that is WONDERFUL!!!!! Is deferiprone another name for Exjade? I live in Melbourne and am on the Exjade tablet 500mg x 2 daily. We didnt get offered any other oral chelator except for Exjade down here (was on Desferal prior to this). I look forward to hearing back from you. You are SO inspirational. hugs

I'm so happy to hear that Smurfette.
I wish you continued good health. 
 :hugfriendSharmin

Is deferiprone another name for Exjade?

Hi,

No, it is another oral chelator which is also known as Kelfer/L1 or Ferinill here in Pakistan.

Siena!!

Deferiprone is another name for L1... I have been on it for the past 2.5yrs..Without any complications..

Thanks for all your good words everyone.... But I am sure with persistance and hesitation you too will get the results you are all trying to achieve... 

We are happy for our achievement. Wish you good luck and keep it down.

Regards

Great job Smurfette,

just curious,how often do you need to transfuse?

ZAINI.

Thank you Zaini,

I get transfused once a month...with a Hb of 91 plus...

Thats very good news, its nice to know that it works for you as well.