Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Sharmin on April 02, 2007, 03:19:49 PM
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Hi all we've been using IP6 for about a week. 500mg 2X a day. We plan it around his day (as it must be taken 1 hr before a meal or 3 hrs after a meal). It's a large capsule so it took him a while gettig used to swallowing it, but he is fine with it now.
Andy, how long does it usually take before patients begin seeing results? He seems to be doing very well taking it 2X a day, should I try 3X a day now?
What results and changes have other patients noticed?
After reading about the product I am excited about all of the potential benefits of IP6, as well as the iron chelation.
I'll keep posting our experience with IP6, hopefully we'll begin seeing results soon.
:hugfriend
Sharmin
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HI SHARMIN,
i hope everything will go well,,pleae do inform us about the results ,my daughter is taking ferriprox right now,but if a vitamin can do that,i think it won't have any side effects,like ferriprox.
Good Luck. :thumbsup
Zaini.
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Hi Zaini,
My son is on desferal as well. The IP6 does not substitute the need for iron chelation using desferal, ejade etc. I am sure Andy can do a better job of explaining it. Desferal, with a dose of vitamin C half hour after beginning desferal, rids his body of iron, we use IP6 along with desferal to help lower his ferritin.
Sharmin
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IP6 has never been tested as an iron chelator for iron overload. The focus of the research has been into its properties as a cancer inhibitor. Of special interest in regards to thalassemia, it has been observed that IP6 removes iron and also prevents the formation of oxygen radicals. These radicals are how iron damages the organs.
from http://jn.nutrition.org/cgi/content/full/133/11/3778S
IP6, specifically interacting with iron to completely inhibit its ability to catalyze hydroxyl radical formation, making IP6 a strong antioxidant. This anticancer action of IP6 may be further related to mineral binding ability; IP6 by binding with Zn2+ can affect thymidine kinase activity, an enzyme essential for DNA synthesis, or remove iron, which may augment colorectal cancer
Since IP6 is a natural substance I would expect its effect to be seen over time and not immediately. I also think there are more subtle things that IP6 may affect that may not be noticed, such as its cancer inhibiting properties. As the thal population ages, there are more secondary problems being recognized and with the role iron has in the formation of cancer cells, it won't be surprising to see cancer among thals. (It is believed that Lisa's dad, who was also a thal, had liver cancer when he passed away at age 48).
Ip6's role as an anti-oxidant could prove very helpful to thals beyond chelation. If it can help prevent the radical formation that is caused by iron, it may help prevent some of the damage iron causes to the organs. At this point it is hypothetical, but the anti-cancer properties can't be disputed and this same activity could also mean less cellular damage to thals. Much more research is needed to determine how effective IP6 is but its ability to prevent radical formation should be of special interest to thals. It may be something to consider adding to the nutritional supplementation for thals.
Sharmin, I see no reason not to raise the dose to 3 caps per day.
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HI,
I've ordered IP6 online for my daughter from puritan's pride,i hope it would work,though i am a bit afraid also,,starting a new medicine always creates a bit of excitement i guess,i hope ur son is doing well sharmin. :hugfriend
Zaini.
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We've been using the IP6 for about a week. We are now using it 3X a day.
We don't have any measurements yet of ferratin but there is a visible change in his complexion.
At times over the years I have seen a copper-y tone in his face which seems to be fading since we began using the IP6. Am I imagining this or have others noticed this as well? I know that it is soon to notice changes with a natural supplement like IP6 but I feel that there is a change.
Sharmin
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Hi Sharmin,
That coppery tone is iron. Iron shows in the skin of transfused thals and the skin will lighten when iron is removed. It's a good sign that you see some change already. I don't know if this will show in serum ferritin tests as IP6 works at the cellular level. I don't know if it has any ability to remove iron from blood but the tests in the cancer studies showed it did work to attach iron at the cellular level. I think you'll have to be the judge of whether it helps. If you see a continued change in skin tone you'll know it is helping.
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Hi everyone,
I'm pretty excited about this. :yahoo
I got my IP-6 today and it's Enzymatic's Cell Forte IP-6 & Inositol brand. According to the info on the pack it contains 800mg IP-6 with different quantities of Calcium, Magnesium, Phosphorus and Inositol per dose (2 tabs which means 400mg IP-6 per tab) and recommends twice per day on empty stomach and additional tablets allowed.
I think I'm going start off with a dose of 800mg once per day (instead of twice per day as indicated on the pack) with 250mg Vit. C to make sure it gets enough free Iron to chelate. I'll increase the dose gradually.
Well, that's about it for now. I'll keep updating.
Take care, Peace!
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Hi guys,
We had our son's blood tested Friday - I'll post results of changes in ferr tomorrow evening. We are going in for transfusion tomorrow.
Sharmin
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Hi Sharmin,
Wishing you all the luck in the world :goodluck that his S.F has come down more with the use of IP-6.
By the way, what dose (mg/kg) per day of IP-6 are you using for your son. Just divide the sum of mg on all tablets/capsules/powder scoops that you give your son in entire day with his weight in kg.
Take care, Peace!
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Hello Sharmin :hugfriend :hugfriend
Wish you all the luck tomorrow, we will be waiting for the update
Take care
Manal
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Thanks everyone,
My son's ferr decreased by 200 points since we began using the IP6. Initially he was on a very small dose - so he has only been having the full dose for a couple of weeks. This is encouraging for us. Of course, as Andy mentioned many of the benefits may not present as a change in SF.
Sajid - currently we are giving my son 2000mg a day. He is 23kg so he gets roughly 87mg per kilo. We began giving him this does last week, before that he was getting 1500mg.
Thanks everyone, I will keep posting his progress,
Sharmin
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Hi Sharmin,
That's good news! I think more importantly is what you have observed in the way your son looks. The change in skin tone is significant.
As I said, if IP6 is effective in aiding chelation, it may not be readily measured by ferritin tests. However, its ability to protect cells from iron oxidation and the damaged caused by iron radicals, may prove to be of major interests to thals. This damage is the reason why organs fail and if this can be inhibited in any way, it could mean years added to a thal's life. Research involving the use of high doses of IP6 in thals should take place, along with monitoring of liver and heart iron, and also heart function.
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Congratulations Sharmin. :hugfriend :hugfriend
I am so happy for this progress, keep it up. I think the IP6 is an effective supplement as it affected the skin tone in such a short period of time.
Thanks Andy for helping us to find natual things that makes a difference with our kids :hugfriend
Take care :wink
Manal
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IT's so great Sharmin,
I am waiting for IP6
ZAINI.
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Hi all!
Is anyone else using IP-6 having stomach problems?
Well, I have been sick for almost a week and my mum attributed it to IP-6. (Yeah I know, mums! always too cautious. And I'm glad that she is :biggrin)
I've been off IP-6 and taking (metronidazole + diloxanide furoate and activated attapulgite) for a week! (The doctors told me to continue the medicine even after the recommended 3 day course)
The infection was that serious!! but thank God things are getting back to normal and I can't seem to convince my mom that it wasn't IP-6
:(
Take care, Peace!
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Sajid,
I doubt there is any connection between IP6 and your infection. In studies, 10 grams per day of IP6 showed no side effects whatsoever. I think your stomach ailment is just coincidence. The medicines you are taking indicate that you have an infection caused by protozoa (amoeba). This could not possibly be related to a supplement.
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My 8 year old has taken up to 2500mg of IP6 a day (we generally are giving him 2000mg/day). He has not had any side effects and his stomach has never been affected by the supplement. Could it be that (if there is any relation bwn you starting the IP6 and the infection) that your supplement was of inferior quality or contaminated?
Sharmin
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Yeah,
I guess you guys are right. It could have been just a coincidence. Though I still can't convince my mom to let me start it again for a while.
No problem. I can wait a few more days. :dunno
Thanks for clearing the doubts.
Take care, Peace!
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Hi guys,
We've been using IP6 for 2 months now. We will do another ferritin before our next tx, probably in another 2 weeks. We'll let you know the change at that time.
During the first few weeks of use we noticed that our son's color became lighter and radiant. Then in the week before his tx he had a sudden drop b/c of a cold (also he was playing in the hot son a lot) so we noticed that his color was more yellow for a few weeks. Now, he is looking lighter and glowing again.
Andy, would that yellow color be the bilirubin because of the hemolysis that occurred during those few days? During the last week before his tx he dropped from 106 to 86 in a few days.
I am glad that he is looking good again!
Sharmin
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Hi Sharmin,
Bilirubin will definitely cause yellow skin tone, hence the jaundice in many newborns.
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Hi everyone,
We have now been using IP6 for 3 months - his ferr was 2300 when we began - it was 2100 last month and today his ferr was in the 1800s! We want it to be lower but I am glad that we are going in the right direction! Thanks for your support everyone - and thank you all for helping us find this supplement. I hope it works for everyone!!
Love,
Sharmin
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:biggrin I am so happy that IP6 is helping and I want to remind you that with IP6 active at the cellular level, inhibiting the oxidative effects of iron, that the effects of IP6 go far beyond lowering serum ferritin. This is something that should have a positive effect on his overall health.
IP6 is such a simple supplement and relatively inexpensive. I think anyone with access should give it a good try.
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Thanks Andy, I was very happy to hear this today. I owe all of this to you. First of all his transfusion requirement decreased b/c we began using prednisone the way that you suggested (we are actually giving him less prednisone than we were before - but the timing makes it more effecive) and then we began using IP6. Before this his ferritin was increasingly rapidly each month - we went from 900 April 2006 to 2300 March 2007, we were very concerned. It seems that finally things are going in the right direction!
Sharmin
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:banghead :banghead :banghead
Why me?!?
I have the IP6 in my hands but can't use it thanks to doctors who won't go beyond text books and an over concerned mom!
:(
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I wonder why...my little 8 year old squirt is usiing it - i didn't mention it to his doctor b/c I assumed that he would not know much about it - as it is a natural supplement. My son does not seem to have any -ve side effects from it - he has had many benefits - the most important of which we can not see (as Andy mentioned) which include antioxidant protection. His skin color was brilliant after I started the supplement, but now b/c he is always in the sun he is looking a little 'well done' - we'll see in the fall how his skin looks. most importantly his ferr has come down.
I hope u can start using it Sajid! :hugfriend
Sharmin
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Hi Sharmin,
Maybe I can... :plot :evilplan
But I'll get in trouble when she finds out that it is half empty (or is that half full?)
By the way, are you using the same amount of Desferal with IP6 as you were before?
Take care, Peace!
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Sajid, this seems so silly. You cannot get amoeba infections from IP6. They come from exposure to contaminated water. They are very common in your part of the world and also very common even in the US among people who swim in fresh water ponds or shallow lakes. IP6 is a natural supplement from the B vitamin family. It is not possible for it to harbor amoeba.
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No Sajid,
i didn't decrease my son's desferal, I think that IP6 and desferal serve 2 different purposes. Desferal more aggressively removes iron from the body, IP6 protects against iron damage, and to a smaller degree chelates iron as well. At this point I think that we need both.
I hope that you can begin taking the IP6 again, as Andy said it can not possibly give you an infection - unless if it was contaminated or something. Why not order more fresh IP6 and give it a go again?
Sharmin
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Hi all!
Is anyone else using IP-6 having stomach problems?
Well, I have been sick for almost a week and my mum attributed it to IP-6. (Yeah I know, mums! always too cautious. And I'm glad that she is :biggrin)
I've been off IP-6 and taking (metronidazole + diloxanide furoate and activated attapulgite) for a week! (The doctors told me to continue the medicine even after the recommended 3 day course)
The infection was that serious!! but thank God things are getting back to normal and I can't seem to convince my mom that it wasn't IP-6
:(
Take care, Peace!
Sajid had stomach problems too with IP6...
Two people cannot have coincidence. Maybe it's just the brand, I'm tempted to switch over to another brand.
-P.