Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Eagle on February 15, 2016, 09:56:04 AM
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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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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?
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Taking 2100 mg per day @ 30 mg per kg. My weight is 70 kg.
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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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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.
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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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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.
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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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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.
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I am from Karachi, Dharmesh.
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Either Andy or Nice friend can help you to get a good hemo based at Pakistan.
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Eagle, check with Ayesha through this Facebook group, https://www.facebook.com/FightAgainstThalassemia/?pnref=lhc
She lives in Karachi.
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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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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.
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Is your doctor a Hematologist?
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Lol. :rotfl
Yes Dharmesh. Good question though.
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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.
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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.
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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
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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.
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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?
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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.
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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.
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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
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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.
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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.
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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.
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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.
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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.