Start decreasing Fe

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #45 on: February 03, 2014, 07:30:39 AM »
Now my ferritin is 3880 ng/ml :biggrin

it was 5070ng/ml before 2 months in november.
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Start decreasing Fe
« Reply #46 on: February 03, 2014, 02:59:04 PM »
 :thumbsup
Andy

All we are saying is give thals a chance.

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Offline Sara76

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Re: Start decreasing Fe
« Reply #47 on: February 04, 2014, 12:19:14 AM »
That's great news, Dharmesh! Keep up the hard work! :yaaaaaay

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Offline Pratik

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Re: Start decreasing Fe
« Reply #48 on: February 16, 2014, 07:26:08 AM »
Now my ferritin is 3880 ng/ml :biggrin

it was 5070ng/ml before 2 months in november.
Wow Dharmesh! You made it! I am so happy for you.

Is this also due to low transfusion frequency after the splenectomy? How often are you transfusing since a month or two? :)

Once again, GREAT WORK!  :dunno

-P.
Every child is special.

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #49 on: April 16, 2014, 06:22:57 AM »
Latest Ferritin 2770 ng/ml(9.04.14)  Vs 3880 ng/ml (31.1.14)

All the 3 chelators are used for last 7 months from sept.

Now onwards i will be using both the 2 oral chelators ie. Kelfer and Defrijet
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Start decreasing Fe
« Reply #50 on: April 16, 2014, 01:52:07 PM »
Great progress!
Andy

All we are saying is give thals a chance.

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Offline Sara76

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Re: Start decreasing Fe
« Reply #51 on: April 16, 2014, 03:58:23 PM »
That's wonderful news! Keep up the good work!

:yaaaaaay :congrats

Suelou

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Offline Pratik

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Re: Start decreasing Fe
« Reply #52 on: May 08, 2014, 03:39:05 PM »
Dharmesh,

Wonderful progress buddy. So happy for you!

-P.
Every child is special.

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #53 on: July 17, 2014, 07:27:35 AM »
Hello Andy and all,

Once again my S.Ferritin comes down to 1630 ng/ml (last report 2770 ng/ml)

I am thinking to go for T2*MRI within some months..but don't hope any good news in that MRI

Start listening your body, it always gives signs

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Offline Pratik

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Re: Start decreasing Fe
« Reply #54 on: July 18, 2014, 09:06:41 AM »
Dharmesh,

Awesome man, that deserves serious salutations!

For me, I am still playing around 4900. No matter how hard I push with Exjade, it just revolves around basically 4500-5400. Andy, any help on this?

I'm thinking to now start Desferal too along with Asunra/Exjade. Dharmesh, what combination you did and how much? For me, taking kelfer/defriprone causes ache in my joints unfortunately so I can't do that as well.

-P.
Every child is special.

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Offline Andy Battaglia

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Re: Start decreasing Fe
« Reply #55 on: July 20, 2014, 12:32:01 AM »
Pratik,

I think combination chelation will be needed for a while. Adding desferal would help a lot. I asked some of the doctors in the US about the joint pains and they replied that they do not take patients off of deferiprone because of joint pain, but rather they treat the pain with an analgesic like ibuprofen.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #56 on: July 21, 2014, 01:48:38 PM »
Dharmesh,

Awesome man, that deserves serious salutations!

For me, I am still playing around 4900. No matter how hard I push with Exjade, it just revolves around basically 4500-5400. Andy, any help on this?

I'm thinking to now start Desferal too along with Asunra/Exjade. Dharmesh, what combination you did and how much? For me, taking kelfer/defriprone causes ache in my joints unfortunately so I can't do that as well.
-P.
We all are aware that Asunra is inadequate for severe iron overload. i read it somewhere in thalpal itself.
so alone asunra is waste of time.
i also had joint pain due to kelfer in past. inspite of it i am using kelfer 2 days a week (prescribed for 3 days a week)along with defrajet.
U can meet hemo in vadodara for this purpose
Start listening your body, it always gives signs

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Offline Pratik

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Re: Start decreasing Fe
« Reply #57 on: August 01, 2014, 11:31:47 AM »
We all are aware that Asunra is inadequate for severe iron overload. i read it somewhere in thalpal itself.
so alone asunra is waste of time.
i also had joint pain due to kelfer in past. inspite of it i am using kelfer 2 days a week (prescribed for 3 days a week)along with defrajet.
U can meet hemo in vadodara for this purpose
Dharmesh,

Hemo in Vadodara (Seema Bhatwadekar) just drives me nuts. I went back in 2009 when I had osteoporosis and she didn't even knew the medicine for sickle cell and lot of other basic info which even 10 year old thal could point out!

Though there are other great doctors. Was your dosage decided by some Hemo or Pediatric or you decided on your own? I am planning to start on desferal pretty soon and I may need some guidance. Might give you a call as well if needed!

Best,

p.
Every child is special.

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #58 on: August 05, 2014, 08:31:23 AM »
Dear P,

I hv never met Dr SB but i have referred a patient to her...
And that patient is quiet happy with the treatment and she added desferal with dfx and getting good results.
So when we remain in touch with any doc continuously... they try to give us better treatment plan according to our need..

and i wonder why u wanted to know a medi of sickel cell from her?

Currently my dosage are decided and prescribed by Dr Vijay Ramanan Sir. and i stay in touch with Andy, JS for the purpose. And last but not least.. i am boss of my own...so final decision is taken by me based on advise.

U can call me whenever u think fit!!
 
Start listening your body, it always gives signs

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Offline Bostonian_04

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Re: Start decreasing Fe
« Reply #59 on: August 05, 2014, 08:39:03 PM »
Dharmesh,

great job in reducing your ferritin.  :clap
Quis custodiet ipsos custodes ? - Plato

 

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