Hi Thalpal

I want to ask that why i am not finding reply from other senior members...
Where are they? Yes they might be engaged in their own issues but i am missing senior members.

Yes , i just decided yesterday to have 3 desferals(for 15-20 hours) instead of 2 desferal(for 12 hours) for 3 to 4 days.( I want S.Ferritin to 440ng/ml from 6440ng/ml by any mode.and think that 40-45 desferals in a month won't be suffice)

Dear if you want to have S. Ferritin lowered by that margin then I guess 3-4 days desferal isnt enough. My iron is in 7000 range and I am on 24/7 pump + kelfer.  I would suggest atleast taking it 5days a week, but for optimum result it has do be 24/7 since you are also experiencing mild chest pain. And remember that its not desferal dosage that matters, but for how long you took it.

Dear if you want to have S. Ferritin lowered by that margin then I guess 3-4 days desferal isnt enough. My iron is in 7000 range and I am on 24/7 pump + kelfer.  I would suggest atleast taking it 5days a week, but for optimum result it has do be 24/7 since you are also experiencing mild chest pain. And remember that its not desferal dosage that matters, but for how long you took it.

Hi Waleed,
Thanx for reply.
You might be right dear that the frequency and dosage are not optimal.
Exactly whenever i increases the dosage some reactions get started. It was joint pain with Kelfer before many years. Recently i increased the dose of Asunra and it causes stomach discomfort.
Another problem which i faced last night is pain in both ears, tinitus problem and it get resolved after 7 hours when desferal pump got completed.(Desferal pump was running continuously for last two days with a break of 6 hours and it cause problems)
Every chelator is causing side effects when i am rising the dose.

I too would like to see more participation by the senior members. There are so many questions that can only be answered by those with experience.

Hanumant,

From my experience, the only way to reduce side effects and get good results is to increase the amount of time desferal is on and the use of combination chelation.  You need to come up with a good plan and then proper assessment through blood tests afterwards. 

We can help you come up with a plan and you can discuss it with your doctor.  Personally, we have found the combination of exjade and desferal to be very effective very quickly with very few side effects.  You must be diligent and use the chelators very consistently but you can achieve success very quickly as well.

Most importantly your doctor must check your kidney and liver funciton every 3 weeks. 

We are here to support and help,

Sharmin

Dear Dharmesh,

Try increasing amount of water. Make sure its atleast 5ml for every one vial of desferal and transfuse it not less than 8hours. Even then if you experience problem 'itching / rashes' on the injection site then you can increase water more than 5ml for every injection.

Secondly, I think that its not because of desferal that you are experiencing side effects but because of   Asunra. Why I am saying this is because you have not been taking desferal for long time, since this is reflected in your iron levels, and even you are not taking high doses. Desferal toxicity increases when ferritin levels are very low and desferal starts disturbing you or when you are on desferal for a very prolonged time.

So far, nearly every thal I met had not seen other side effects of desferal except 'itching/rashes/lumps' on injection site.

I think you should check again, whether it is desferal or asunra causing problems.

One more experience I would like to share. In 2002/2003 I had high iron levels. Sure around 10,000. I used desferal only 24/7 and within a month ferritin was 5,000 and next month it was 2,500. Dont undermine the power of desferal, if taken correctly will yield excellent results.

Since your iron levels are very high and given your chest pains. I think you should not compromise desferal at all.

This is my suggestion. In the end, you are the boss !

Hanumant,

From my experience, the only way to reduce side effects and get good results is to increase the amount of time desferal is on and the use of combination chelation.  You need to come up with a good plan and then proper assessment through blood tests afterwards. 

We can help you come up with a plan and you can discuss it with your doctor.  Personally, we have found the combination of exjade and desferal to be very effective very quickly with very few side effects.  You must be diligent and use the chelators very consistently but you can achieve success very quickly as well.

Most importantly your doctor must check your kidney and liver funciton every 3 weeks. 

We are here to support and help,

Sharmin

Thanx Dear Sharmin,
How is little A?
I took 2 desferal of 500mg in 10ml Distilled Water for 12 hours. I just tried to increase the time of Desferal in last week and i took 3 desferal simultaneously for 18-20 hours and i firmly believe that my ear pain was due to continuous desferal because when desferal get completed then the pain got disappear in some hours . As my hearing is affected since long but this kind of pain in ear is new for me because i have just restarted desferal before 5 weeks.
I am monitoring ALT/SGPT and S.Creatinine  every 2-3 weeks continuously since 2008 when i started Asunra. In addition also Eye and Ear Check up etc.
I am going to ask the doctor about the Ear Problem.

Dear Dharmesh,

Try increasing amount of water. Make sure its atleast 5ml for every one vial of desferal and transfuse it not less than 8hours. Even then if you experience problem 'itching / rashes' on the injection site then you can increase water more than 5ml for every injection.

Secondly, I think that its not because of desferal that you are experiencing side effects but because of   Asunra. Why I am saying this is because you have not been taking desferal for long time, since this is reflected in your iron levels, and even you are not taking high doses. Desferal toxicity increases when ferritin levels are very low and desferal starts disturbing you or when you are on desferal for a very prolonged time.

So far, nearly every thal I met had not seen other side effects of desferal except 'itching/rashes/lumps' on injection site.

I think you should check again, whether it is desferal or asunra causing problems.

One more experience I would like to share. In 2002/2003 I had high iron levels. Sure around 10,000. I used desferal only 24/7 and within a month ferritin was 5,000 and next month it was 2,500. Dont undermine the power of desferal, if taken correctly will yield excellent results.

Since your iron levels are very high and given your chest pains. I think you should not compromise desferal at all.

This is my suggestion. In the end, you are the boss !

Hi Waleed,
Yes i am taking 1 vial in 5 ml but u said that for not less than 8 hours means 16 hours for 2 vials or 8 hours for 2 vials?
Why i am feeling that Desferal is causing the pro because i just restarted it before 4-5 weeks and this ear pain disappeared when i complet the desferal.
High dose of Asunra is causing stomach discomfort so i have decided to take 1200mg for some weeks then i will increase it to 1600mg.
And ya, There is no more Chest Pain as i have started one pill for it and added desferal to my chelation programme.
Thanx for heartily reply.

I meant 2 vials together for atleast 8 hours. Longevity is better though. And by chest pain, my point was not about pain itself, but the signal it gives that hear is overloaded with iron. I think you should do 3vials 24/7 + asunra. I am doing 4vials 24/7 + kelfer.

Hi and Cool Hello to All,
Right now i am taking 1200mg Asunra and 1000mg Desferal Daily. Desferal takes atleast 10 to 12 hours. No Chest pain. Ear pain was due to infection and there was throat infection as well.

Hi Dear All,
My SGPT 32 IU/L
S. Creatinine 1.01 mg/dl
S. Ferritin 11452 µg/L
Still having an infection in throat and ear.
Having 4 Units Tx LR RCC(225ml each approx, still low hb)                         

CURRENT UPGRADED CHELATION PLAN
4 ASUNRA Total 1600mg (instead of 3)
2 Desferal Daily(12 hours/10ml d.water)

GETTING MORE & MORE KNOWLEDGE WHENEVER I OPEN THALPAL.
           EXPLORING THALPAL
THANX LISA AND ANDY.

Dear Andy Bro,
I was thinking on this matter since many days, let me write it over here. Need your help.

To reduce iron level and ferritin level chelation is much important, but right now in my case there is iron overload and Chelation remain insufficient. What i have observed since long that it's the HIGH LEVEL OF INPUT(Blood Transfusion) in my case , i am getting 4 units a month(Approx 225ml each) which is causing iron level very up and that's why the OUTPUT (chelation) become lower in comparision of INPUT. still my hb remains low at most 8.5gm

So, what could be the reason for higher need of transfusions.?
1. I have my spleen intact, BUT It's size is not big.
2. I have some Antibody reactions(Though doc. says COOMB'S TEST WILL BE NEGATIVE).
3. I am not taking Vitamin-E

Whenever i get transfusions thenafter 2-3 days my upper abdomen(liver) area become hard. After that it gradually day by day become soft and before the day of transfusion it's ultimately become original soft. Again this process repeated as and when i got tx.

What's all these? Plz guide me.

Dear Andy Bro,
I was thinking on this matter since many days, let me write it over here. Need your help.

To reduce iron level and ferritin level chelation is much important, but right now in my case there is iron overload and Chelation remain insufficient. What i have observed since long that it's the HIGH LEVEL OF INPUT(Blood Transfusion) in my case , i am getting 4 units a month(Approx 225ml each) which is causing iron level very up and that's why the OUTPUT (chelation) become lower in comparision of INPUT. still my hb remains low at most 8.5gm

So, what could be the reason for higher need of transfusions.?
1. I have my spleen intact, BUT It's size is not big.
2. I have some Antibody reactions(Though doc. says COOMB'S TEST WILL BE NEGATIVE).
3. I am not taking Vitamin-E

Whenever i get transfusions thenafter 2-3 days my upper abdomen(liver) area become hard. After that it gradually day by day become soft and before the day of transfusion it's ultimately become original soft. Again this process repeated as and when i got tx.

What's all these? What should be done to up pre bt hb level? Plz guide me.

Hey Dear Andy,

Nothing to Say?

The upper left abdomen is where the spleen is located and your experience after transfusion sounds very much like your spleen is active in destroying the red blood cells after your transfusion. Are you using filtered blood?