Help with Chelation

Lol.

Yes Dharmesh. Good question though.

I believe lack of experience is the only reason a doctor would refuse that combination. Combination chelation works well using any 2 of the 3 available chelators.

Andy,
I messaged Ayesha on the Facebook group you mentioned as well. She gave me 5 or 6 names and my consultant is one of them.

So now I'll probably go to one of the other doctors she mentioned. I need someone to guide me properly with the dosage for kelfer/asunra combo.

Hi Everyone,

I have the same problem with my daughter - Aadvika, she is nearly 5 now and her Ferritin level is 2550, which I believe is quite high. Her weight is 16.5 KG

She is on Desferal 600mg X 6 nights per week. we try to keep her well hydrated. Ascorbic acid 100mg an hour before desferal.

But somehow her Urine colour doesn't show any sign of Chelation. Not even dark Orange. Her consultant is not considering Exjade with desferal because her Liver doesn't support Exjade.

Please advise what should we do to get her Ferritin down. Many Thanks for your help.

Best Regards,
Atin

Hi Andy,

Since now I have started Desferal, I have concern about the urine color as well. How long does it take before the color of urine changes? During the infusion or after completion of it? I didn't see much of an effect or change, maybe mild yellow but that's about it.

Is it necessary that the color changes or must change for every patient or each patient is unique?

Thanks.

Desferal does excrete iron mostly through urine, so you will see some change in color. The darkness reflects how much free iron is available to be chelated.
Are you also currently taking an oral chelator?

Atin,

Keep in mind that being well hydrated will dilute the color of urine (which is good), so it may just be that the hydration is masking the color a bit. If there is free iron, desferal is chelating it. I would suggest tkaing the vitamin C right at the start of the desferal, rather than an hour before. C washes out of the body rapidly, so give it with the desferal.

Pratik,

I just saw your other post and you are also taking Exjade. The Exjade will free up iron that the desferal can remove. I would also suggest you take vitamin C at the beginning of your desferal session to free up more iron, if you are not already doing so. And if you are staying well hydrated, your urine will not be as dark as you expect. This is okay. It just means you are hydrating properly and giving your kidneys the fluid they need to do their job right.

Is your doctor a Hematologist?

Then either he is not updated or he is not willing to take risk.

Try to force him for Kelfer/Exjade combo which is the first choice of hemo as kelfer/desferal combo is out of date

Pratik,

I just saw your other post and you are also taking Exjade. The Exjade will free up iron that the desferal can remove. I would also suggest you take vitamin C at the beginning of your desferal session to free up more iron, if you are not already doing so. And if you are staying well hydrated, your urine will not be as dark as you expect. This is okay. It just means you are hydrating properly and giving your kidneys the fluid they need to do their job right.

Yes, I take Exjade. And yes, I also drink lot of water so I stay hydrated very well.

And yes, as per recommendation of doctor and Dharmesh, I take Vitamin C tablet right during the start of Desferal infusion. How much Vitamin C would you recommend to take in form of tablet? And what's safe limit for thal majors? Since I heard excess for us is not very good.

Thanks.

Pratik,
200-250 mg vitamin C for adults.


And I just wanted to add a little update about someone who I have been guiding with Kelfer and Asunra together. This person is in India and is now taking a lesser dose of each drug and finding it more tolerable this way. There have been no problems with the combination and so far, things are going well.

Pratik,
200-250 mg vitamin C for adults.


And I just wanted to add a little update about someone who I have been guiding with Kelfer and Asunra together. This person is in India and is now taking a lesser dose of each drug and finding it more tolerable this way. There have been no problems with the combination and so far, things are going well.

Andy,
Please advise dosage for me. My weight is 70 kg and I'm currently taking 2100 mg asunra - 1200 in the morning and 900 in the evening.

Please tell me how much of each I should take and how I should distribute them throughout the week? I really need help with this.

From your feedback and everybody's experience, I think it would do me good if I start kelfer/asunra combo.

Eagle,

Get a ferritin check before adding kelfer if you haven't had one recently. If you are going to start kelfer, continue the dose of Asunra you currently take, while you are beginning kelfer. I would suggest starting with 1000 mg kelfer daily for the first two weeks and observe for any side effects or problems using kelfer. If no real problems occur, double the dose to 2000 mg and continue for two more weeks. During this period, you will be getting the same chelation you have been from Asunra alone, with the added chelation of the kelfer. There should be no rush with kelfer as long as you maintain your dose of Asunra. It is very important to make sure your body is tolerating both drugs (most people can) before raising doses. When the iron load is quite high, patients will often take full doses of both chelators, so even this is potentially possible if your body can handle it and your liver and kidney values stay within range and your white cells don't drop. I would suggest that if all is going fine, to then raise the kelfer to 3000 mg daily for one month and then get a new ferritin check to see if any progress can be noted yet. At that time, I would want to re-examine the doses.

Thank you so much Andy!

I'll get baseline tests done this weekend before starting Kelfer. Had ferittin done a month or so ago but I'll get it checked again.

Will keep posting my progress here so that I can get help from you.