Unaware!

Hi Ray,

Welcome aboard! I just joined the group last weekend myself. I'm so glad I did, and I can assure you that you'll also benefit from the great friends on this forum!

Your hemoglobin levels seem to run low. I'd suggest you get a thorough evaluation of both your blood transfusion regimen and iron overload by a hematologist, and yes, you definitely need to get on a chelation therapy. If you didn't like one chelator, try another one (under an approval and direction of your hematologist). It's no reason to give up.

Take care,
SF

Thanks Zaini, Andy, Nice friend, Narendra, Manal, Sf,
 thanks for the replies and suggestions,
 I think the name of the chelating drug which I used previously was desferoximine,
 the haematologist has suggested another one I am not sure but will find out.
I do drink a lot of tea. not green tea but regular tea with milk so I guess thats helpful too,

thanks a lot again for welcoming me and giving your suggestions, I ll keep posting, God Bless you all.

Hello Ray,

Desferoximine is generally known as desferal,how were you using it? its administered throught a needle placed under your skin for about 10 to 12 hours.

You can ask your doctor about a new oral chelator called Asunra.

Zaini.

hi Zaini,
              I was given these capsules which had to be taken once in 6 hours orally, the haematologist has suggested a new one i think its desirox, i am not sure but will find out and let you know, have a nice day....God bless you

Ray,

I think you are talking about Defriprone/L1/Ferriprox/Kelfer.But these are supposed to be taken along with Deferoximine.So if you want oral chelation only ,yes Desirox is much better option,it will take time but i hope it works,Have you started taking it yet ?

Zaini.

Although deferiprone is an excellent choice for combination chelation with desferal, it can be and is used alone with great success. I would point to Poirot as one who has used only kelfer for many years and has kept his ferritin well under control. Any of the three available chelators can be used by themselves. With Ray's ferritin level hovering just over 2000, any one chelator would be sufficient, unless a liver scan showed a high iron load. Kelfer alone, would probably be sufficient.

With ferritin around 100, I used only ferriprox for one year and then proceed to an MRI.
It showed heart and liver iron within normal range, no iron at all. However liver - due to my taking only ferriprox for the whole year - had accumulated a little iron, still within normal range. Of course I cannot say that this goes for everyone, it might happen only to me.

Lena.

hi Guys,
             sorry that  I Did not know the name correctly, I had been taking Kelfer in 2007 and stopped, so if desirox is good I could try that, thanks, God bless you

Hi evrybody!
I'm so glad Ray has joined the forum and tanx to all of u for guiding him. He is usually the advice-giver in our family, now its good to see him on the receiving end !!!!
Hope he finds the right chelation drug. I would also like to know what his diet should be like. Doctors adviced him not to include greens in his diet, is it right? What about chicken(his fav), fish and meat? Any fruits or veggies he should avoid taking?
His urea levels are also high.
 

Hello SIL,

Thals should avoid red meat,chicken is fine,green veggies like spinach does contain iron,but iron in red meat is more readily and easily absorbed by the body,while iron in veggies,which is non-heme iron is not that readily absorbed,but for me,if some one is trying to lower their ferritin,they should avoid iron in diet,as in thal intermedia body automatically absorbs more iron from the food.

Zaini.

SIL ,
  with zaini , ...
 
here is a quote from our expert Mr.Andy's post

Some green vegetables that are high in iron should be eaten only in moderation, but please keep in mind that vegetables contain non-heme iron and it is not as readily absorbed as the heme iron in meats, so as long as you eat meat, I wouldn't worry much about the non-heme iron in veggies. The iron in meats is very highly absorbed so it makes more sense to watch how much and what type of meat you eat, if you want to cut back your dietary intake of iron. Red meat contains the highest quantities of iron.

As confounded as researchers have been about this subject, it is becoming more clear. Iron stores in the body are not the primary source of iron for building red blood cells. Iron from the gut is. Regardless of your high iron stores, your body will look to the gut for the iron it needs to produce RBC's. At some point, the researchers will finally say that the reason hepcidin levels don't increase in iron overloaded people, is because the body is actually trying to absorb even more iron because it is working extra to produce RBC's, so it cuts production of hepcidin. The best way to remedy this is by keeping a higher Hb level, so the bone marrow activity is not increased. It's a vicious cycle and for transfusing patients, keeping the Hb higher is the best way to stop excess iron absorption from food.

Best REgards
Umair