Hi Thalpal

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #45 on: July 01, 2012, 10:50:45 AM »
Hi Pratik,
Many times it happen that we get confused between heart pain and acidity. One doc. also said to me before some days that my pain was due to gas trouble :biggrin
So if u are sure then it is ok.
Dharmesh
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #46 on: July 01, 2012, 10:54:38 AM »
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.
Yes ,
You are absolutely right Andybrother.
I am also thinking in the same direction try trying to find the ideal schedule for me by trial and error method.
Will update you.
Dharmesh
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #47 on: July 05, 2012, 01:44:58 PM »
Hi Very Speedy Andyyy,
My Desferal Pump is running now while i want to ask you that
Whether i required any report in addition to CBC, ALT, S.Creatinine and Ferittin as i have added Desferal with Asunra with my chelation schedule? Any other monitoring required for this combination? Perhaps i am going for reporting tomorrow.
Dharmesh.
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Hi Thalpal
« Reply #48 on: July 05, 2012, 03:49:56 PM »
If you use desferal for an extended period of time, the annual vision and hearing tests should also be done.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #49 on: July 06, 2012, 07:30:37 AM »
If you use desferal for an extended period of time, the annual vision and hearing tests should also be done.
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)

About Vision and Hearing( I can look into future and can hear voice of heart :biggrin)

I was realized at an age of 17 or 18 that i have some kind of hearing problem. Then found out the reason is desferal and it has cause HIGH FREQUENCY HEARING LOSS at an age of 5 years soon after starting desferal therapy. I wanted to cure this problem as sometime it becomes more painful to me than Thal.
Do you have any suggestions or medicine or the hearing machine is the only solution.?

I was taking Desirox  and then Asunra from 2008. In April i went for eye examination and doc. seen CATARACT in my eyes. and has suggested me for bi-annual examination of eyes.
Thank you,
Dharmesh
Start listening your body, it always gives signs

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Offline Pratik

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Re: Hi Thalpal
« Reply #50 on: July 06, 2012, 11:07:50 AM »
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)

About Vision and Hearing( I can look into future and can hear voice of heart :biggrin)

I was realized at an age of 17 or 18 that i have some kind of hearing problem. Then found out the reason is desferal and it has cause HIGH FREQUENCY HEARING LOSS at an age of 5 years soon after starting desferal therapy. I wanted to cure this problem as sometime it becomes more painful to me than Thal.
Do you have any suggestions or medicine or the hearing machine is the only solution.?

I was taking Desirox  and then Asunra from 2008. In April i went for eye examination and doc. seen CATARACT in my eyes. and has suggested me for bi-annual examination of eyes.
Thank you,
Dharmesh
Hi Dharmesh,

Your hearing is affected too? Well, I once in 2009 had a misconception that due to Asunra/Exjade, I had a little problem in hearing but I went to an ENT and got the hearing test done and they were perfectly normal.

I also get my eye tests done every year.
Every child is special.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #51 on: July 06, 2012, 02:47:22 PM »
Hi Pratik,
Both Asunra and Desferal does affect Hearing and Vision ability, Patient require yearly vision and hearing checkup.
Generally, the person who is talking to me do not  realize that i have this kinda pro.
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #52 on: July 13, 2012, 07:50:32 AM »
Dharmesh,

All 3 chelators in combinations of no more than 2 at one time (this method worked well for an experienced patient who developed this on his own).

Dear Andy,
I need some more Information on the above option of all the three chelators in combinations. Does it means that these 3 chelators are to be taken daily at appropriate time? or two chelators(Asunra+Desferal) combined for some weeks, months and then after another two chelators(Desferal+Kelfer) for some weeks, months? How that person has managed it can u please elaborate it?
Please , Please guide.
Dharmesh
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Hi Thalpal
« Reply #53 on: July 13, 2012, 02:15:58 PM »
Our member, Baal did this. He used two chelators at a time but never more than two. He alternated the chelators over time, always taking two, but never more than two at the same time. This was his own method and not approved by any doctor, but it helped him reduce side effects of the drugs.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #54 on: July 16, 2012, 09:39:40 AM »
Hi Andy,
Thank You for throwing lights on this issue. I was thinking that 3 chelators in 24 hours.
Whether Baal has used combination of both the oral chelators? i.e. L1 & DFX. What was the results?
Dharmesh
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Hi Thalpal
« Reply #55 on: July 16, 2012, 02:53:41 PM »
No, Baal never used 3 chelators at the same time. I would not suggest 3 different chelators within such a short period. The point in changing the combinations is to minimize side effects, so this is something he did periodically.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #56 on: July 27, 2012, 11:38:04 AM »
Hi Andy,
Right now i am on ONLY 1200MG ASUNRA and Desferal(i took 41 desferals in a month). Unable to tolarate higher dosage of Asunra because it's causing stomach discomfort.
Doctor has advised me to take 1600mg Asunra in split dosage.
I want to keep the dose at this level for sometime. Is it ok?

Another question , How many minutes the Asunra take to fully dissolved? Should i wait for half an hour to dissolve it ? Right now i am taking it with water.
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #57 on: July 27, 2012, 11:55:43 AM »
Hi Andy,
My latest report today S.Ferritin 6440ng/ml done in another lab.
Still an existing  chellange to bring it to 440 ng/ml.
Dharmesh
hahahaha
S.Ferritin on 16/07/2012  11620ng/ml :biggrin Vs 6440ng/ml last month and in the same lab.  :rotfl :rotfl
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Hi Thalpal
« Reply #58 on: July 27, 2012, 02:02:45 PM »
I suspect something like an infection or inflammation is causing the higher readings. This illustrates the importance of relying on scans for your true iron readings, as ferritin does not seem reliable in your case. And yes, I have seen this in others.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Hi Thalpal
« Reply #59 on: July 28, 2012, 01:16:50 PM »
I suspect something like an infection or inflammation is causing the higher readings. This illustrates the importance of relying on scans for your true iron readings, as ferritin does not seem reliable in your case. And yes, I have seen this in others.
Hi Dear,
1. My WBC are below 4000 since last 2-3years.
2. Thrice After bt i got inflammation /swelling in feet and face.
Once My face was looking like a balloon.
3. I am taking half Cetrezine twice in a week for allergise or reactions of bt. My doc. said to me that this allergies is not due to Asunra but due to constant bt and adviese TSW RBC instead of plain RBC/RCC. Right now i am on LR-RCC(SAGM Method)
Please guide
Start listening your body, it always gives signs

 

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