Hi Thalpal

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #30 on: June 24, 2012, 07:16:41 AM »
Hi Dear Andy,
I started Combination Therapy with Asunra (1200+800=2000mg daily) + Desferal S.C.
I want to take 12 to 15 Desferal (500mg each) in a week.
Have started one tablet daily to tackle mild heart pain.
Is the dosage is correct?
About Asunra i want to ask is that should i take 1600mg or2000mg or2400mg daily in addition to desferal? My weight is 48kgs.
And i hope that definitely i will give a good  news regarding reduction of iron overload within some months.
And i would like to say stop to iron overload :stopmad
Thanks.
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Hi Thalpal
« Reply #31 on: June 24, 2012, 03:38:33 PM »
Dharmesh,

Take between 1600 and 2000 mg Asunra daily. This will depend on well, you tolerate Asunra. Intensive chelation is needed. When you take desferal, take 100-200 mg vitamin C when you start, so that more iron is released. Do not take higher doses of C.
Andy

All we are saying is give thals a chance.

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Offline Pratik

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Re: Hi Thalpal
« Reply #32 on: June 25, 2012, 04:23:31 PM »
Dharmesh,

You also have heart pain? Like what? Did you got it diagnosed or checked up?
Every child is special.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #33 on: June 27, 2012, 11:17:26 AM »
YES,
I have very tiny, mild pain sometimes in the heart due to iron overload in heart as per T2* MRI.
Cardiac Physician prescribe me 1 medicine for it before some days. Now i feel better.
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #34 on: June 27, 2012, 11:19:10 AM »
Dharmesh,

You also have heart pain? Like what? Did you got it diagnosed or checked up?
Pratik,
You also have the same pro?
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #35 on: June 27, 2012, 11:51:38 AM »
Dharmesh,

Take between 1600 and 2000 mg Asunra daily. This will depend on well, you tolerate Asunra. Intensive chelation is needed. When you take desferal, take 100-200 mg vitamin C when you start, so that more iron is released. Do not take higher doses of C.
Hi Andy,
I have started combination therapy with Asunra and Desferal. I am taking 2000mg Asunra and 1000mg Desferal daily. I have stomach discomfort after starting use of both the chelators. What should i require to do to resolve this discomfort?
Dharmesh.
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Hi Thalpal
« Reply #36 on: June 27, 2012, 02:06:05 PM »
I assumne you are splitting the dose, so I suggest only taking half the Asunra dose for a few days and see how your stomach responds. What are you using to mix the Asunra in? Are you aware that it can be taken with a variety of soft foods, in addition to liquids.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #37 on: June 27, 2012, 05:38:52 PM »
I assumne you are splitting the dose, so I suggest only taking half the Asunra dose for a few days and see how your stomach responds. What are you using to mix the Asunra in? Are you aware that it can be taken with a variety of soft foods, in addition to liquids.
Yeah i am splitting the dose(1200+800mg), I have skip today's evening dose and will skip tomorrow morning's dose.
I am using Juice of a fruit identical to Orange(It is ditto like Orange but i don't know the exact word for it in English)
Yeah i am aware about other soft food to mix of Asunra but don't know about exact food iteam. Thalpal make me aware about it. Thanks.
The problem was started when i started Desfeal in addition to Asunra.
So now i have skipped Asunra and Desferal. I will restart it tomorrow with half dose if everything goes well.
Thanks for Suggestion.
Dharmesh.
Start listening your body, it always gives signs

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Offline Pratik

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Re: Hi Thalpal
« Reply #38 on: June 27, 2012, 07:29:40 PM »
YES,
I have very tiny, mild pain sometimes in the heart due to iron overload in heart as per T2* MRI.
Cardiac Physician prescribe me 1 medicine for it before some days. Now i feel better.
Hi Dharmesh, yes, I do have pain and recently it is blooming lately. Sometimes I feel like attack or someone is pinching my heart with a needle, I would get these T2 tests done within a month from now and see where I stand, am scared a lot though. I was never scared in my life but these heart pains makes me depressed sometimes.

What medicine did your physician described?

-Pratik.
Every child is special.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #39 on: June 28, 2012, 07:22:56 AM »
First of all i want to say is that don't worry , don't be depressed. Because before 2 weeks i was feeling the same problem , identical situation  same like you. Now i feel much better. Ok.?(FYI in rajkot there are so many patients are taking the same kind of pill for smooth heart functioning.)
What exactly happen to me was that my echo cardiography report was normal but MRI show severe iron overload and i consult  my pediatrician and he advised me to cousult local cardiac physician and then he prescribed me the tablet.
I don't want to give the name because there are two different drugs to tackle this pro. i have to take only one. and the dose is depending on many things.
All you have to do is1. just consult your Thal. specialist doc.  2. Do MRI (Don't postponed it like me , i postponed it for 4 to 5 years :wink and due to that mistake i am taking the heart pill)
The pain will be resolved within one or two weeks i believe but consult your doc quickly.
Because iron damage the organ continuously and i suffer the pain for 2 - 3 months.
But i hope you will not repeat the mistake i did.
Update us and feel free to ask. Bye sweetu.
Dharmesh.
Start listening your body, it always gives signs

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Offline Pratik

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Re: Hi Thalpal
« Reply #40 on: June 28, 2012, 07:31:56 PM »
First of all i want to say is that don't worry , don't be depressed. Because before 2 weeks i was feeling the same problem , identical situation  same like you. Now i feel much better. Ok.?(FYI in rajkot there are so many patients are taking the same kind of pill for smooth heart functioning.)
What exactly happen to me was that my echo cardiography report was normal but MRI show severe iron overload and i consult  my pediatrician and he advised me to cousult local cardiac physician and then he prescribed me the tablet.
I don't want to give the name because there are two different drugs to tackle this pro. i have to take only one. and the dose is depending on many things.
All you have to do is1. just consult your Thal. specialist doc.  2. Do MRI (Don't postponed it like me , i postponed it for 4 to 5 years :wink and due to that mistake i am taking the heart pill)
The pain will be resolved within one or two weeks i believe but consult your doc quickly.
Because iron damage the organ continuously and i suffer the pain for 2 - 3 months.
But i hope you will not repeat the mistake i did.
Update us and feel free to ask. Bye sweetu.
Dharmesh.

Hi Dharmesh, thanks for the reply. Well, I won't definitely start taking it right away, but I just wanted to know more about this and consult/talk with my Thal doctor (Physician) who also happens to be a very fine heart/cardiac physician and a doctor. Hence I just wanted to ask the name of the pill and also how much mg you take and consult/talk with them. Just PM me the pill name (both, also tell one which you're taking) and how much mg you take? I would ask the physician and would get advice once again after T2 is done.

And don't worry, I won't delay now. I didn't heard about T2 function yet or I would have done it very long ago. Day after tomorrow (Saturday), my transfusion is scheduled. Thereafter, next after 21 days, when my transfusion happens, I am gonna get T2 and liver function done. So basically within around 25 days. Although, this time I am gonna get Color Doppler test done most probably to see how heart is functioning. I got this last done on around 28th or 30th January, 2009 when I got diabetes.

Also one more question about heart pain, did you also felt that during heart pain, right from heart in front, it used to pain in the same straight line of heart till back side as well? Because I do feel this way many times. While even writing this post, my heart is paining.

Last question, did your heart pain went away? I mean that medicine would help solve the issue? Am also feeling this since past 2 months only. :/

-Pratik.
Every child is special.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #41 on: June 30, 2012, 01:48:09 PM »
Hi Pratik,
1.T2* Score that is the result of the reporting. It is simply MRI of Cardiac and Liver Iron Assessment for Thalassemia Protocol.(to be done annually). You know about MRI?
2.Don't know about color doplor for heart. Are you talking about 2 D Echo cadrdiography? But let me share u my personal experience. My Echo cardiography is absolutely normal and still i was have pain in heart. ??? ??? So inspite of having much iron overload in heart and liver these organ try to work well and normally. so i believe Echo cardiography my mislead us because it shows the function of heart not the iron deposited in heart.
Though i am not a doc. i can just share my experience so if doc. suggest you the doppler then u should act accordingly.
3. For the pain in heart, i believe 99.99% it is due to iron overload. When iron deposited in small veins of heart , it causes pain. Yes there was continuous pain at one point in my heart after having started at for half or one seconds early and then duration was increasing.
4. Now i am taking the pill since last 7 days, have much relief aprox. 80%.
5.I was having the same pro. while writing my post earlier. but now no pain.

WHAT I WANT TO SAY AND FINISH IS THAT DON'T WASTE THE SINGLE HOUR. CONSULT YOU R DOC. DO MRI FOR CARDIAC AND LIVER IRON ASSESSMENT IN AHMEDABAD. AND START THE PILL. SEE PM
AND THE MIGHT BE DUE TO LOVE. ARE YOU IN LOVE WITH YOUR GF? HOW MANY GF U HAVE :rotfl :rotfl
BE SERIOUS, CONSULT YOU DOC.ON SUNDAY. WHY DON'T U CALL ME?
DHARMESH

Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #42 on: June 30, 2012, 02:25:38 PM »
Yeah i am splitting the dose(1200+800mg), I have skip today's evening dose and will skip tomorrow morning's dose.
I am using Juice of a fruit identical to Orange(It is ditto like Orange but i don't know the exact word for it in English)
Yeah i am aware about other soft food to mix of Asunra but don't know about exact food iteam. Thalpal make me aware about it. Thanks.
The problem was started when i started Desfeal in addition to Asunra.
So now i have skipped Asunra and Desferal. I will restart it tomorrow with half dose if everything goes well.
Thanks for Suggestion.
Dharmesh.
Hi Andy,
Got relief from Stomach discomfort for one day (had taken just 800mg asunra once in a day.)
Today have mild stomach discomfort(had taken 1200mg Asunra instead of 800mg Yesterday.) I am mixing the Asunra with juice of 1 piece Sweet Lime and appropriate qty of water
What i would like to do is that i will try it in morning. from two days i am taking it in evening.
Is it okay?
Need your suggestion.
Dharmesh
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Hi Thalpal
« Reply #43 on: June 30, 2012, 04:03:22 PM »
Dharmesh,

Stomach problems when raising the dose of Exjade/Asunra are common, so any method you can find to work yourself up to the full desired dose is exactly what you need to do. Patient ingenuity is how thals survive, so find what works for you, as long as in the end, you get up to your desired dosage.
Andy

All we are saying is give thals a chance.

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Offline Pratik

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Re: Hi Thalpal
« Reply #44 on: June 30, 2012, 04:15:07 PM »
Hi Dharmesh,

Just came here to update the situation a little bit. I believe I don't have heart pain (or if any, very very mild) but GASTRIC (Acidity) problem. I am taking acidity pills and Acidity syrup (Jivan Mixxer) and I feel a little relaxed than yesterday.

Hope for best.  :biggrin

Though, am gonna get T2 MRI done in under 25 days. Just got transfused today in morning.
Every child is special.

 

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