Hello everyone

Hi I am Merv, my wife of two years has Thalassemia major and is now almost 36, her ferritin level is extremely high at 11,000 which is about half what it was 6 months ago. She is taking desferal Asunra and Kelfar not quite at maximum and I do try to keep her motivated to stay on treatment as well as maintain a good diet, she is encouraged by the result so far. She has regular transfusions at approx 3 week intervals now but was at 6 week intervals two years back, her spleen was a worry last year it had enlarged to 21cm however we opted to try combination of iron cheelators and the spleen is now reduced to 7cm, the doctor was the most surprised by this as he did not think it was possible to reduce in size to that extent.
We live in a country where there is very little known about this and I do my best to make everything available for her, I import most of whats needed and so far its going well but i would like to see a faster reduction in ferritin. As there is no expertise we travel back to my wifes home country for tests and advice from her doctor as often as we can. We have just completed tests and loaded up with medications and are about to return home, The tests results were encouraging with improvement in all important indicators. I am determined to make her as healthy as can be but I am not an expert so I would appreciate any advice that might assist.

Hi I am Merv, my wife of two years has Thalassemia major and is now almost 36, her ferritin level is extremely high at 11,000 which is about half what it was 6 months ago. She is taking desferal Asunra and Kelfar not quite at maximum and I do try to keep her motivated to stay on treatment as well as maintain a good diet, she is encouraged by the result so far. She has regular transfusions at approx 3 week intervals now but was at 6 week intervals two years back, her spleen was a worry last year it had enlarged to 21cm however we opted to try combination of iron cheelators and the spleen is now reduced to 7cm, the doctor was the most surprised by this as he did not think it was possible to reduce in size to that extent.
We live in a country where there is very little known about this and I do my best to make everything available for her, I import most of whats needed and so far its going well but i would like to see a faster reduction in ferritin. As there is no expertise we travel back to my wifes home country for tests and advice from her doctor as often as we can. We have just completed tests and loaded up with medications and are about to return home, The tests results were encouraging with improvement in all important indicators. I am determined to make her as healthy as can be but I am not an expert so I would appreciate any advice that might assist.

Hi Merv, most welcome to Thalpal.

11,000 iron is of huge concern and you need to make her chelate aggressively. Combination of Desferal and Kelfer (Defriprone) is more proven to reduce iron rapidly. Just keep her motivated. And regarding slpeen, yes, if you keep the Hb levels around 9-10 or more then the spleen would be in control.

Curious as to which country you live in, maybe we can help as we have a lot of thals from various countries and they can better help you, of course, if you don't want to disclose, it's fine.

And I wish you and your wife all the best.

-P.

Thanks for the reply,
We are in Papua New Guinea. My wife is from Bangladesh.
Lucky for us we located a local doctor who gives my wife VIP treatment for transfusions or we couldnt live here. Unfortunately there are no experts here that can help so we rely on regular trips back to Bangladesh. Our most recent trip showed improvement in my wifes condition but there is a longway to go.

Merv,

Welcome to thalpal.  Most parents of thal majors have one wish - and that is for their children to one day find a spouse who will support them they way you support your wife.  I was extremely pleased to read your post.  Having you by her side, I know your wife will be ok.  It is a difficult process but once she gets closer to her goal I know that she will be more motivated.  It is very important to not allow her hemoglobin to drop below 10, and continued chelation will help her iron levels come down further.  She needs continuous chelation. 

If she is doing well with Kelfer and asunra then she should continue because swtiching her to desferal may reduce her compliance.  What dosages of each is she currently on?  Perhaps if there is room to increase - she can increase her asunra level.  Exjade is very effective at reducing iron overload. 

There are various supplements that can also protect her from iron damage - you will find them listed in the supplement section of this forum.

Best of luck to you and please keep in touch with us!

Sharmin

There are various supplements that can also protect her from iron damage - you will find them listed in the supplement section of this forum.

Hi Sharmin,

Could you list some? I'd be glad to find more about them and how they protect from the damages that iron causes.

-P.

Hi Merv,
Hope that your wife is doing well now, my wife has high ferritin too so I just want to ask how is your wife feels now and did she managed to lower her high ferritin levels?
Hope to hear back from you soon
Hamdan