Hi Thalpal

I am Dharmesh 27 Yrs old living in Gujarat, India
Diagnosed Thal. Major at an age of 3 months, Diabetes in  March 2006 right now on Asunra 1600mg daily + Folic Acid + Calcium + Insulin (twice a day). BT 1 unit at every 9-10 days. S.ferritin is climbing high too much at around 8000ng/ml. I have completed B.com and  CA PE-II.
I am having lovely and caring family because of my father and mother i am able to reach at this stage which was looking quiet impossible before 27 years. At that time even doctors were predicting the age of thal major at maximum 12. But with the grace of mother, father and God this has became fact.
So this is my story
Awaiting your reply

Hi Dharmesh,

What is your weight and for how long has your Asunra dose been 1600 mg/day?

Welcome Dharmesh!

Hi Dharmesh,

As we chat first here (we're from same state), nice to meet you.

And its fantastic, did you completed inter CA? If yes, how much groups of final CA are completed?

And yes, the task that was seemed extremely blatant that Thal Majors cannot live more has changed way too much now.

You also have diabetes? Me too. At what ferritin levels did you got diabetes? I take 5 insulins a day btw. I possess it since January, 2009.

Nice to meet you, again.

Keep in touch.

-Pratik.

hi pratik,
i have completed CA Professional Education -II & CA Professional Education -I erstwhile known as CA Intermediate and Foundation respectively the toughest one. Then i completed the 3 yrs articleship training and GMCS and so on......
In 2006 March 28/29 i became more sweet due to IDDM , ferritin was around 4000-5000 ng/ml despite of taking desferal since 1990.
I am taking two shots daily. why u r taking it 5 times?
BTW, there are some thal. major having diabetes at an age of 7 so u n me are more blessed
Sweet dharmesh

Hi Dharmesh,

What is your weight and for how long has your Asunra dose been 1600 mg/day?

Hiiiiiiii Andyyyyy,
Weight 48.5Kgs
Since last 3 weeks on 1600mg/day.
Coz not able to increase the dose due to allergies, skin rash ooohhh(that is more painful than thal.major) due to asunra and high sugar level.
From yesterday i started splitting 800+800mg and 1200+800mg every alternate day
So avg. dose will be 37.5mg/kg/day.
awaiting your suggestions

Welcome Dharmesh!

Hi Bobby,
Thanx for warm welcome.

Oh Dharmesh, you caught Diabetes around 4500 only? I was around 5000 or 5500 I guess.

Are there any chances to it go if our iron levels goes down? What you think?

-Pratik.

Dharmesh,

I think splitting the dose may make it easier regarding the rash and side effects. The dose is good and should provide better results than 30 mg/kg. If progress isn't seen after 6 months or so, you should consider combination chelation, using desferal and Kelfer.

Oh Dharmesh, you caught Diabetes around 4500 only? I was around 5000 or 5500 I guess.

Are there any chances to it go if our iron levels goes down? What you think?

-Pratik.

it was in range of 4000-6000ng/ml approx consistently higher( i don't write exact report coz exact reporting of s. ferritin is myth ). some unfortunate patients caught by diabetes in first decade of life we are more lucky than them
2. always expect miracle , i have seen such kind of miracle which are increasing our faith, believe in god. ALL YOU NEED TO DO IS BELIEVE STRONGLY IN GOD

Dharmesh,

I think splitting the dose may make it easier regarding the rash and side effects. The dose is good and should provide better results than 30 mg/kg. If progress isn't seen after 6 months or so, you should consider combination chelation, using desferal and Kelfer.

Hi Andy,
Thanx for the expert advise regarding the dose.
But combination therapy as far as kelfer concern, when it was launched in india, i started it and got the joint pain and stopped kelfer or L1.
Before 5 years sometime i was taking kelfer i don't remember it exactly but that had caused much acidity etc.
As regarding asunra right now mild catract has been developed in my eye. So all the three chelators are giving me unwanted side effects since long.

Is desferal an option for you? Combinations of desferal and low dose kelfer can be effective, as can desferal and Exjade together. Low dose kelfer can reduce the joint pains.

Is desferal an option for you? Combinations of desferal and low dose kelfer can be effective, as can desferal and Exjade together. Low dose kelfer can reduce the joint pains.

Hi Andy,
Truly speaking, I hate desferal
Desferal and Exjade together? Just have heard from 1 doc. here but not having much info. Anybody is taking Exjade and Desferal (I.V. or I.M.?) together? Whether doc prescribe it?
Please throw some light on the issue.
Dharmesh

There have been various small trials in different countries combining desferal and Exjade. They all show the same thing. The combination works better to reduce ferritin and it is safe. I know one woman whose life was saved by this shortly after Exjade was released. Congestive heart failure was reversed. Her doctor prescribed this for her even though there were no trials yet. It was a matter of saving the patient and we can't wait for trials. Danielle, our other administrator has also used this combination with success. Baal also has used all combinations of chelators. Sharmin's son took part in a US trial and all went well. I do not hesitate to recommend it, because your lives are far more important than waiting for long term trials.

There have been various small trials in different countries combining desferal and Exjade. They all show the same thing. The combination works better to reduce ferritin and it is safe. I know one woman whose life was saved by this shortly after Exjade was released. Congestive heart failure was reversed. Her doctor prescribed this for her even though there were no trials yet. It was a matter of saving the patient and we can't wait for trials. Danielle, our other administrator has also used this combination with success. Baal also has used all combinations of chelators. Sharmin's son took part in a US trial and all went well. I do not hesitate to recommend it, because your lives are far more important than waiting for long term trials.

Hi Andy,
What should be the composition of schedule of combi. therapy Asunra & Desferal?