i take the first step

That is an impressive drop. Do you feel better physically now that your iron is so low?

Congratulations!!!!!!!!!!!!!!!!
My doc gave green light at the end of August and I restarted the first of September. The last six weeks I have been very ill (gonna split my doses; will get used again about all the staring at uni and public life for mixing it. I have no choice; again more stuff to drag with me. That's my lil whine). Three weeks ago it was 1200 and at tuesday I receive my tomorrow's lab work results. It prolly will hit the 2000 before coming down. You are gonna be my drive to beat all this, Panos. It IS possible to knock it out of your body! And my twice dose of Shakira live in Concert ;) ]Cologne was much better than Rotterdam!]
I am a little blind, so how low is it now exactly?

hi

yes andy, i feel very much stronger and my body shows this in
some resultes too.
per example my ejection fraction is now 56% and the PHA
ambulance called me now to come every half year(not every 3 months
like the last years).
even the diabetes is going better. no more over 200-results since a few months.
and at least the transfusion-intervalls changes from 12-14 days to 15-20 days.

to ansered ur question dori......
the exact ferritin count was last time; 499
the last half year is coming down from 700 to now 500.....
and i continious to chelate with the 3 drogs as follow;
ones in the month iv desferal for straigth a week by porth
and exjade every day, and the ather days ferriprox and exjade...
my next ferriscan is on 19.januar.


this was my news  happy holly days to all      panos

We need to talk about combin deferiprone/Exjade. Please remind me of it.
Once again congratulations! It must feel good. You have done an excellent job. Will you be also in Antayla for tif's conference in May?

Panos,

I am very excited for you!  You are doing a terrific job - I hope and pray for continued excellent results for you.  Soon your iron levels will be below 100:)

Sharmin

here now a pic

from the last ferriscan.

That's remarkable progress over just 1 1/2 years.

It's also a testimony to what can be done when you take control of your life. Most thals can be saved from iron overload and certain death by taking control of the situation and doing everything that needs to be done to correct the problem. With modern chelation, this is now possible and I hope everyone understands that. It is not too late to turn your life around if you find yourself in a state of high iron overload. Panos turned it around. Nur turned it around. Umair turned it around. And we just keep hearing from more and more people how they are learning to turn things around and be healthy people.

I think more than anything, Lisa would be happiest to hear these stories of how people have reversed their iron status and given themselves a new chance at life and that her group has played a definite role in helping people get on the right path. I hope we can continue to give the help and support that can make the difference to many.

hi panos.
good work. v happy for u. its nice to hear that u hav succeeded in reducing ur ferritin. u r an inspiration for people like me. i just saw ur posts and how u hav worked hard on ur iron.
i hope i can reduce my iron too. i am now on asunra 1600mg and am allergic to desferal. i see that u hav combined asunrra and ferriprox. i hav recently increased my dosage of asunra frm 1500 to 1600. we r waiting to see if my ferritin reduces with this. else we also might hav to combine asunra and ferriprox. did u hav any problem with this combination? i would appreciate ur views.
thanks
shaziya

hi shaz!

dont be afraid to start the combinetion with exjade and kelfer...

if u have taken exjade before...and also have prooft kellfer....

than normaly there isnt a reasen to let it be....

if u  are under control cause of the exjade, so please watch the

white bloodcells and the neutrophils too...

and please dont forgot to start at a very small dose for example

1-1-1  for a week. than 2-2-2 for the next week. than 3-2-2....

than 3-3-2...and please dont take more than100/100 mg to ur kilos.

because u take the second chelator too.

for me every combination works...only under kelfer everytime i take it

for longer i start too gain weigth cause of more hungry...

than i stop it and combine the other 2 chelators.

i wish u good luck and let us know how u do...    panos

hi panos.
hope ur fine. thank u so much for ur advice. since we hav just increased the dosage of asunra again we r waiting to see if it works. else i might hav to combine.
 its good to hear that u had no problems with this combination. i wish u all the best in bringing ur iron down some more.. thank u.
shaziya

hey panoz.... gr8 job budy .. now b ready to check mine ferritin report after an year without Desferal at home  ... ;) ..

Best rEgards
Umair

hi pals

some good news i have to share...

its the second time i goes to a 4 weeks intervall between

transfusions.....

and i did a bones-check up....

the damage get from 53% in the year 2008 to

now 75%.           

                               panos

and here unfortunatly some not so good news...

today after 25 days i got transfusionet (radiated and washed blood)

and after 35 minutes a got a very bad reakion(TRALLY)

2 hours of shivering and state of shok.

after that they gave me cortison and tavegil and the second unit.

now i am at home and the result of the cortison is that my

bloodsugar is at   495 .

in a moment i think i am on a good way..there comes this.  panos

Panos,

I am sorry to hear this, hope you are fine now.

I thought that it is a routine to take cortison injection before transfuion to avoid any reaction, so it seems that it is not the same at your center??

Is there any thing that trigger the TRALLY in particular, did you discuss it with your doctor??

manal

i dont get it before takig blood.

i become it to stop the reaktion...

they take after this a lot of blood to find the reasen.

maybe another antibody....

in the run of my transfusion-history (over 2.500 units by now)

i have a dozen of antibodys in my sample.

thanks for take concern about me manal.