Australian Thalassaemia Association

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #30 on: October 09, 2010, 06:34:17 PM »
Need suggestion

Hi
This is bappy.I need little suggestion from you all.my farretin level up from 3227 to 4365.doctor suggest me to take 48 desfarol in a month.
its very painful.Do you have any suggestion that, how can i make it painless !..and how many desfarol i can use at one time. please suggest me .

Thanks
Bappy
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Manal

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Re: Australian Thalassaemia Association
« Reply #31 on: October 10, 2010, 09:37:26 AM »
Yes Bappy this is the best way to reduce your ferritin quickly


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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #32 on: October 10, 2010, 10:03:25 PM »
Bappy,

Are you using anything to numb the area before you place the needle? Emla cream is used for this. Do you move the needle around to different sites? You really do need more chelation. Is Kelfer an option for you?
Andy

All we are saying is give thals a chance.

Re: Australian Thalassaemia Association
« Reply #33 on: October 10, 2010, 11:01:17 PM »
Bappy, it's a while since I've used s/c desferal but have you tried hot or cold compresses after the infusion has finished.  I used to rotate injection sites from abdomen (left then right side), arms and thighs to give each site a good rest.  I found the itchiness the worst part (and the lumps, oh I feel your pain).  Am sure you can also mix hydrocortisone with the desferal for high dosages to reduce the irratation, but you would need to check this with your doctor or pharmacist.  How much water do you mix the desferal with?  I used balloon infusors as a teenager and they were mixed 48mls given over 48hours, the volume of the drug was awful and caused me lots of skin irritations.  I much preferred the 10ml syringe pump method.  Hope you get it sorted soon.

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #34 on: October 20, 2010, 04:15:07 PM »
Thank you so much for the very useful suggestion. I am continuing my desfarol.actually i am start with kalfar at fast
but it not support me. so, i start desfarol.48 desfarol in a month it's very hard task but i try.i reach 24 in this
month.Now few days i am suffering join pain in my leg and shoulder.i take D3 calcium
tablets for calcium (nature made 500mg),but it's not worked.please pray for me.

Thanks
Bappy 
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Sharmin

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Re: Australian Thalassaemia Association
« Reply #35 on: October 22, 2010, 03:26:14 AM »
Bappy,

Sending my prayers you way.

Wishing you the best always,

Sharmin
Sharmin

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #36 on: February 24, 2011, 04:45:50 PM »
Hi friends
            This is bappy.I hope all my friends are remember me.I have some good news to share with you all.
             I just passed my graduation in 2nd division.I wish you all stay with me.
           
             please prayer for me and support me.


Thanks
Bappy
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Sharmin

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Re: Australian Thalassaemia Association
« Reply #37 on: February 27, 2011, 12:42:28 AM »
Bappy that is such great news!  I wish you continued success and happiness!

Sharmin
Sharmin

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Offline Zaini

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Re: Australian Thalassaemia Association
« Reply #38 on: February 27, 2011, 10:26:45 AM »
Congrats Bappy :thumbsup way to go.

Zaini.
^*^Xaini^*^

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #39 on: May 20, 2011, 03:46:50 PM »
Dear Andy
How are you.I wish you having a good time over there.
long time i am unable to comment because i am little bit in crisis.
I do not know that how can i go before, because i face many problems
which i never wanted to face.I need regular support by any one if
any one want to support me.please help me.

dear Andy i have some question,i hope you solve those !

* Is Desfarol can be used in vain directly ?

* Can i take desfarol and desirox/exjade/asunra ?

* How can i maintained my health { because i lost 5 kg after i start kalfar} ?

* if i want to go other country for my better treatment then how can i process ?

please help me.

Bappy
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #40 on: May 21, 2011, 02:26:34 AM »
Hi Bappy,

Desferal can be taken by IV. This can even be started in your center and then taken home with you. It is more effective than subcutaneous desferal. Desferal and Exjade/Asunra can be used together. This has been tested successfully in small trials and also by many patients. It will speed up iron removal to use the combination. The weight loss with kelfer is surprising. Often patients gain weight while using it. Is it causing stomach problems? I do not know a lot about moving to other countries for treatment and think it is very difficult for most countries. However, foreign students at public universities in the UK can get treatment under government health programs. Even that could be subject to government budget cuts. Is Dr Robin still at the same center?
Andy

All we are saying is give thals a chance.

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #41 on: May 23, 2011, 02:26:31 PM »

Dear Andy
     I am very happy for your replay.Its very useful answer for me.
Dr.robin still in the same position and the same organization.
we meet last 7th may in the thalasamia conference.

bappy
I am a thalassamia E-beta patient and I am a M.B.S student

 

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