Help with Chelation

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Offline Eagle

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Help with Chelation
« on: February 15, 2016, 09:56:04 AM »
Hello friends
I am thalassemia major and have not been very good when it comes to Chelation. Have never been able to get a good friendship with desferal. Was good friends with asunra for a while from 2008 to 2013/14 but then we parted ways when my SGPT levels rose 4 time above normal. That's when I met Kelfer. We were friends for a while but I had to stop as my wbc and platelets were getting effected.

So now. I have no friends. I tried desferal again but my ferittin went from 4k to 7k within 1.5 months of taking desferal. I know that asunra gives an initial bounce in ferittin when you start but desferal as well?
For now I am trying to reconcile with asunra and have started it in the much recommended split dose formula.

Currently my ferittin is 4.5k with a cardiac score of 10. I need help in bringing my ferri levels down. Any advice?

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Offline Dharmesh

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Re: Help with Chelation
« Reply #1 on: February 15, 2016, 05:34:54 PM »
Hi
Friends are here !!!
Yes, Ferritin do increase with Desferal too. I had experienced the same and so many friends of mine had too
All the best for re-chellanging Asunra.

Whats ur dosage and weight currently?
« Last Edit: February 15, 2016, 05:41:35 PM by HANUMANTAASHRIT »
Start listening your body, it always gives signs

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Offline Eagle

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Re: Help with Chelation
« Reply #2 on: February 15, 2016, 07:19:17 PM »
Taking 2100 mg per day @ 30 mg per kg. My weight is 70 kg.

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Offline Nomad

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Re: Help with Chelation
« Reply #3 on: February 15, 2016, 08:04:35 PM »
Hello, ever considered to do combined therapy with two chelators?
You can do
Ferriprox and Asunra
Desferal and Asunra
Desferal and Ferriprox.
Maybe this could help you bring the ferritin on a normal range and then switch to only one chelator.

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Offline Andy Battaglia

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Re: Help with Chelation
« Reply #4 on: February 16, 2016, 03:32:24 AM »
Eagle,

I agree that you should be on combination chelation. Your experience indicates that the side effects of each chelator make it difficult to maintain full and regular doing. A combination would allow you to take a smaller dose of each, while still getting more chelation than you currently are. For Asunra, split dosing does help, as does making sure your hydration is always good. This holds for kelfer, too. Hydration is extremely important. Milk thistle can also be very helpful in keeping the LFT's down. And make sure you get tested in the morning, the earlier the better, as activity causes the levels to rise and appear higher than they really are.
Andy

All we are saying is give thals a chance.

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Offline Eagle

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Re: Help with Chelation
« Reply #5 on: February 16, 2016, 05:17:15 AM »
How does the dosage work in combo? Let's say I am going for the asunra/Kelfer combo (I'd prefer to stay away from desferal cause I know I won't comply for long).

Is it okay to take asunra and Kelfer at the same time?
Will I be taking both Meds throughout the week? Or 3 days Kelfer and 4 days asunra?

How does the combo work? Kindly guide me as a I definitely want to start this program to reduce my fer levels.

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Offline Dharmesh

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Re: Help with Chelation
« Reply #6 on: February 17, 2016, 05:05:12 AM »
Hi

The Asunra and Kelfer combo is the latest and accepted combo now. It is gradually replacing the combo of Desferal and Kelfer.

First of all you need a good hematologist.

Second, you can take it in any time schedule fit to you.

But , it should be done gradully.
Start listening your body, it always gives signs

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Offline Eagle

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Re: Help with Chelation
« Reply #7 on: February 17, 2016, 07:37:20 AM »
A good hematologist is hard to find around here. I mean it's slightly worrying for me that my consultant doesn't recommend doing a combo but here I see people doing it for many years and benefiting from it. Then I would have expected to find out about wheatgrass thru my consultant but that I found out here as well. I am sure he's a great hematologist but he's just not as updated on thal as I would expect him to be.

Anyhow I will discuss this with him so that he is able to monitor progress. But can you take Kelfer and asunra on the same days? Or do you have to have them on separate days?

Also, what is the recommended dosage for wheatgrass? It's available here in the powder form.

Your help is appreciated Dharmesh, Nomad and Andy!
 

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Offline Dharmesh

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Re: Help with Chelation
« Reply #8 on: February 17, 2016, 12:17:51 PM »
Yes both can be combined simultaneously and alternatively also.
There is no problem in it but it should be decided based on case to case

To find a good hemo , first let me know ur location.
Start listening your body, it always gives signs

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Offline Eagle

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Re: Help with Chelation
« Reply #9 on: February 17, 2016, 02:20:40 PM »
I am from Karachi, Dharmesh.

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Offline Dharmesh

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Re: Help with Chelation
« Reply #10 on: February 18, 2016, 12:06:04 PM »
Either Andy or Nice friend can help you to get a good hemo based at Pakistan.
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Help with Chelation
« Reply #11 on: February 19, 2016, 12:32:10 AM »
Eagle, check with Ayesha through this Facebook group, https://www.facebook.com/FightAgainstThalassemia/?pnref=lhc
She lives in Karachi.
Andy

All we are saying is give thals a chance.

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Offline Eagle

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Re: Help with Chelation
« Reply #12 on: February 19, 2016, 09:41:32 AM »
Thanks Andy!

I have an appointment with my Dr today. Will talk to him about taking Chelation in combo. I need to see what his perspective is.  Maybe there's a reason he's never recommended this to me.

I'll get in touch with Ayesha afterwards and see what doctor she recommends.

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Offline Eagle

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Re: Help with Chelation
« Reply #13 on: February 19, 2016, 12:47:46 PM »
Andy,

I asked my doctor 2 things today.

1. Can I take Kelfer and asunra combo?
He said no. But he said I can take desferal with either asunra or Kelfer.
2. Should I take wheatgrass or milk thistle?
He said he doesn't  know about that. But he also said that they're herbs so nothing wrong in trying.

So basically he's not recommending asunra/Kelfer combo.
« Last Edit: February 19, 2016, 02:28:20 PM by Eagle »

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Offline Dharmesh

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Re: Help with Chelation
« Reply #14 on: February 21, 2016, 01:32:15 PM »
Is your doctor a Hematologist?
Start listening your body, it always gives signs

 

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