i take the first step

There are several reasons why thalassemics might get edema (water retention). The biggest concern is, of course, poor heart function. However, if the heart tests out fine in T2* and echo tests, other possibilities should be considered. As I mentioned, a temporary increase in free iron has been seen to occur sometimes in combination therapy. The best thing that can be done if this happens, is up the desferal intake until things clear up and also make sure natural chelators like IP6 are being used. Poor leg veins can also cause water retention in the ankles and feet and this is a fairly common problem. Elevating the feet while resting can help. Getting up and moving around should be done if you sit for long periods or stand for long periods in one place. Walking does help improve this condition. I would also suggest some citrus be taken daily between meals, so as not to add to iron absorption. The veins need vitamin C for proper function so thals do need to make sure they get some C daily from their diet. This last one is very important. Stay hydrated at all times. Don't drown yourself but please make sure you get plenty of fluids and especially water every day. This is needed to eliminate toxins from the body and dehydration can actually cause edema.

I will appreciate feedback to see if any of these suggestions help those bothered by swollen ankles and feet.

Do you mean with citrus: Adding a slice of citron or leman juice to your water?
The thing I know, is that I am probably vit C. deficiency. I got some problems with the limit of 200mg a day. Most of the times I only have 1 glass of orange juice with Exjade. However, yesterday I eat plenty of fruit.

Today I will buy or order ip6. I will also buy green tea. Must this be pure green tea? I don't think you can ask me to do that ;). I will pick up green tea with jasmine.

For at least 5 years I have had infusion (for transfusions) in my foot!!! 

I will be part of the experiment,

Dore

Hi Dore,

The important thing is to try to get all the vitamins and minerals your body needs but because of its ability to aid iron absorption, vitamin C foods are often avoided completely. As you know from taking Exjade, some vitamin C is OK, as long as you don't take more than 200-250 mg daily and also avoid having vitamin C foods at the same time as high iron foods. So, taking it with Exjade is good and having some fruit between meals is also a good way to get vitamin C. So have a piece of fruit like an orange or have some citrus juice. It is very good for the veins and also helps minimize bruising.

here are my latest news now....

after reaching 95 kilo (heavyweight) i stopped now

the comby-therapie with desferal and ferriprox.

i am not able to stop the more and more foodsupply.

at the beginnig i was 72 kilogramm.......

i speek with my hematologist and we come to the

agreement to switch to exjade in combination with desferal....

i start yesterday with a low low dose and try to raise it up slowly....

my latest ferritin is 1.800

lets see whats now happend.....


please keep the fingers crossed for me.....panos

Hi Panoz,
its really good to hear that you r going to switch to Exjade+Desferal combinatio therapy , BEST OF LUCK buddy, i hope you'll find alot (infact all) of its benefits... your Fe isn't too high but it can decrease more with less efforts , soo keep the good work up and keep compliant to the chelation ... i hope everything gonna be right soon, Don't worry ....

lots of good wishes
& Best Regards
Take Care
Umair

tx u umair.....

lets see whats happend.....

Hi Baal,

My son has been taking exjade/desferal for 10 months now - and so far (thank god) we have seen no side effects.  Oakland has done a trial with numerous patients, no patient has had any side effects so far - the treatment has been very effective and many patients found their ferritins fall below 500 and they were temporarily taken off of the combination therapy until their ferritins got a little higher.  I think that you will find much success with this combination.

Best of luck,
Sharmin

Pano,

Rejecting ferriprox due to overweight? No, we would never do that here. All thals who had the same problem here just refrained from eating and they have regained their original weight.

<vre panouli, den einai logos aftos na afiseis kati poy exei doulepsei kai na arxiseis kati kenourgio poy exei kai perissoterous kindinoys kai parenergies. Ti na po? apla ego den tha to ekana pote. To ferriprox exei apodeixthi to kalitero kai  den to afinoume gia tetoioys logous.>

hi thalpals

here are my latest news !

after switch to exjade/desferal combie i lost 12 kilos of weight,

and comes down to 82 kilos.

my ferritin stay stabile at 2000....tomorrow i became brandnew results...

the results from the ferriscane is commig yesterday and its not so bad....

my liveriron is 11........

and my BNP (a new marker for hearthfailtur) comes down from

800 (in august 2008) to now 110......

this must be the good work of the ferriprox.

i feel very very well the last 6 weeks....          panos



 

and my BNP (a new marker for hearthfailtur) comes down from

800 (in august 2008) to now 110......

Congratulations Panos, this is very encourging, keep up the good work

manal

Panos,

This is good to hear and I agree that Ferriprox has done much good for your heart. Are you feeling physically stronger than earlier?

I want to add some explanation about the B-type natriuretic peptide (BNP) test.

http://findarticles.com/p/articles/mi_qa3689/is_200301/ai_n9190946/

NP is a neurohormone that the heart secretes in response to ventricular volume expansion and pressure overload. By helping to maintain the body's salt and volume balance, BNP counteracts the adverse effects of the neuroendocrine stimulation that accompanies HF.

An elevated BNP level correlates with increased left ventricular enddiastolic pressure and volume, New York Heart Association classifications, and pulmonary capillary wedge pressure. It's useful for differentiating HF from lung disease in patients with dyspnea. ..
A BNP test is performed on a venous blood sample via fluorescence immunoassay, which quantifies BNP levels in whole blood and plasma specimens. Normal BNP levels are less than 100 picograms/ml; levels greater than 100 picograms/ml are a primary indication of HF. In one study, patients with HF had BNP levels ranging from 400 to 800 picograms/ml.

As you can see, Panos is almost at normal in this test compared to previously being at the high end of the scale. This is excellent improvement. Also, I want to say that in patients whose ferritin is low, Exjade is doing a very good job. Aston Dialo told me this week that his ferritin is now around 250 and his Exjade dose is going to be cut in half. Good going guys! Keep up the good work. Your bodies will thank you.

Panos,

Thats really great to hear,your hard work is finally paying off,keep it up ,you are an inspiration  .

Zaini.

  Panoz , its indeed a good report nice to hear this ... BNP is really condition is really improved in comparison to last year in  august it was .... so, Panoz, how r u feeling now , energetic !! healthy !! and ofcourse happy... controled Iron levels is a big relief for thals,  keep it up buddy  .... way to go Yayyy.....

Best Regards
Take Care
Umair

Bravo Pano!!!

Hard work always gives good results!

( tin Triti fevgo pali gia diakopes, 10 meres akoma, tha ta poume meta.bravo sou. kai se anotera!!!)

Congratulations Panos!!!! Are you having a nice summer? Paris was super and last week i was in Germany :D I dont love even France, I also love Germany! Nice people. Once again congratulations. Give yourself tge permission to do something special. For example à strange combination for à big icecream (i Will dream about that tonight)
as for special mri (for heart?) im told that i will have one in very soon future. We"ll see. (i know Dutch couple with you kid who has à doctor in Oberhausen. Is that close to you? It isnt too far away for me, but T
the only i visited was for a concert. Enough! Nite, Nite
ps the horrible is xaused by my mob