Thalassemia Patients and Friends
Discussion Forums => Diet, Nutrition and Supplements => Topic started by: Sharmin on September 19, 2007, 03:16:59 AM
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Hi all - I have been very busy - so I've lost touch for a while - I miss you all!!
My son has been doing well - he began using IP6 in the spring - his ferr had risen to 2300 at the time - today his ferr was 1590 - since the only change we have made since then is introducing IP6 - I believe that it has had a great impact.
I wish you all well!!
Love,
Sharmin
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Hello Sharmin,
It's nice to hear that IP6 is doing good for your son,we all need good news time by time,wishing him health and joy.
ZAINI.
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That's great Sharmin! Keep updating us on your son's improvement in lowering in hs iron with the use of IP6. I do hope it would be soon be available here in the Philippines coz I would love to try that myself......... Take care!
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We too missed you Sharmin :hugfriendand i am very happy that IP6 has made this difference. It seems that such supplement has a great benefits to thal and non thal
Keep it up and keep us informed
Manal
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Thank you everyone - I wish you all the best as well.
Does anyone know anything about the gene therapy conferences? I'm sure discussions have taken place but I haven't been around to participate in them.
:hugfriend Sharmin
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Hi sharmin,
i am new member i would like to know what is the procedure to start having IP6.
my daughter is a thal major 9 yrs old( name FIRDAUS).she has some antibodies in her blood due to
which her blood does not crossmatch very quickly.Help me tell how the antibodies can be treated.
Thanx plz reply.
Marziya.
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Hi Mariziya,
A warm welcome to our site. You will learn a lot about how to take care of your daughter from our wise and caring members.
IP6 is a great supplement - I began giving it to my son a year ago. I give him CF IP-6 & Inositol 2 capsules twice daily on an empty stomach. This supplement is indicated for protection against iron and free radical damage - so it supports cell health in organs. Many of us noticed a change in skin color once we began using it - the skin appeared clearer - the ashy and orangey tinge disappeared. IP-6 should be used alongside other chelation (desferal) but does not replace it.
Antibodies sometime occur in transfused thalassemia patients - which means that it becomes a little more difficult to cross match. My son currently has 7 allo-antibodies - which are antibodies against donor blood - and I assume this is what your daughter has. Many other thal patients have these as well - and as long as the blood is well screened your daughter should be fine. It may be a good idea to have a phenotype or genotype screening done - so that blood is better matched for her and she is less likely to form more antibodies. Andy can explain this much better.
My son, after forming many allo - antibodies ended up with and auto - antibody - this can occur in patients who have a lot of allo antibodies - but does NOT have to happen. This auto antibody indiscriminately destroys all transfused red blood cells - causing autoimmune hemolytic anemia - this antibody can be transient or chronic (which has been the case with my son for the last two years) - so we are searching for ways to control it. Currently, we are treating it with prednisone and in the future we are looking at other methods. We hope that the antibody will eventually burn out and things will return to normal - meaning back to monthly transfusions.
If you can find out from your doctor whether your daughter has allo or auto antibodies we can advise you further. My guess is that your daughter has allo antibodies - which is not as big of a concern as having an auto antibody. Just make sure that her blood is well matched. My son had allo antibodies from age 2 to age 6 with no issues what so ever. Only the auto antibody has caused an issue - and even with that - thank god - he seems to be a healthy little boy - he just needs a few more transfusions and a little more chelation. Other than that he is an active and happy boy. No matter what, I am sure your daughter will be fine.
Timely transfusions, regular follow ups and compliance with chelation are key. What country do you live in? Hopefully you can find a member close by who you can share experiences with.
I hope I have addressed you concerns, and hopefully alleviated some of your worries. Please feel free to ask me anything else that I may be able to help you with. Andy is our wealth of knowledge here - I am sure he will have a lot to add.
Take care and best of luck to Firdaus :hugfriend
Sharmin
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Hi Marziya.
Sharmin has explained things quite well. IP6 is simply a member of the B family of vitamins and is very safe to use. It can be taken daily just like any vitamin. Take on an empty stomach with a full glass of water one hour before eating. Do not use milk instead of water and make sure no protein foods are eaten for at least an hour after taking. From the experience of some of our members using IP6, I strongly recommend its use.
Is the antibody reaction causing your daughter to transfuse more frequently? How often does she get blood and what is her Hb level before she takes blood?
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Hi Andy,
Thanks a lot for your response!!
Yes my daughter FIRDAUS needs more blood transfusions because of the antibodies.I am in INDIA. her doctor said we cannot do anything abt it infact he recommended spleenactomy(removal of the spleen).I am not quite ready to do that to her at this young age.Her spleen is not enalrged at all.
Her Hb drops down to 8 gms in a week and 6 gms in 2 weeks.So i prefer to give her weekly transfusions n proper chelation also.
I would like to start giving her IP6.But would like to know how i can get it in india.
Thanks again,
Marziya
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Marziya,
I will hopefully be gaining more information about dealing with antibodies from one of the best thalassemia specialists and antibody experts in the world. I will gladly share anything I learn with you upon my return. I hope that it will help your daughter, many others on this site, as well as my son.
It sounds like you are doing a great job for your child - that is most important. I would not consider removing your daughter's spleen especially if it is not enlarged. Removing the spleen sometimes has beneficial effects in the beginning but it can actually leave the person worse off in the long run - patients often relapse, sometimes worse than what they started off as. Also, the spleen serves many important functions in your child's well being. Andy has posted some important information with regard to antibodies and splenectomy in other posts. Of course this is my opinion, and I don't know your physician's point of view. But do make sure you investigate and research fully.
I live in Canada so I don't know about the availability of IP6 in India. Perhaps other patients in India may know. Best of luck!
Once again, I hope to bring back some valuable info soon:)
Take care,
Sharmin
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Hi all! :wink
yesterday I receive IP-6 Inositol Hexaphosphate 510 mg , I intend to get 2 capsules 2 times, which means 4 per day. I am 56 kg and wonder if this dose would be appropriate for my weight.
Another concern of mine is that, I will start using Ferriprox 8 tablets almost every day combind with desferal for 4-5 days per week. As I understood, IP6 has a great impact on iron and helps us to lower our ferretin levels. But the question is - can I use this combination on a day- IP6(4tablets)+Ferriprox(8 tablets)+ Desferal (4 ones). Is it possible to overtreat my body in some way? I do not know whether it can be dangerous because of the many medicines for iron.
Does someone use this combination and have experience? :)
I should also get Calcium-Magnesium-Zinc as a supplemet, is it right? If there is something that u think I missed and I don't know, please share it with me :)
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Hi Rozitka,
Yes, that dose is fine for you. Take two tablets two times each day with a glass of water. Take it at least 30 minutes before eating. If taken with protein foods like milk, the IP6 will react with the protein and lose much of its value, so only take it with water. IP6 is safe to use with chelators and is a supplement but is not strong enough to replace chelation. If your iron ever drops into a very low range (under 300 ferritin) then you should reduce your chelator but IP6 is always safe. It is already found in every cell in the body, so there is no concern with using more in supplements. One of its main properties is that it is an antioxidant which protects cells from iron damage. After a month of use, let us know if you see any difference in your skin tone (or color). Many patients report a lightening of the skin. This would be most noticeable in areas that get dark from iron, like the fingers.
A calcium/magnesium supplement is good for the bones and the heart but you should take some vitamin D with it to help it be absorbed by the body. Many thals are low in zinc so a zinc supplement can help.
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Hi Andy,
I am already getting IP6 and feel good. I will keep u informed about my health condition and how IP6 is working for me :)
Bye! :wink
Take care !
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Hey guys...
my dr and I want to know where do u gt IP6 because I want to try it
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i think here u can buy IP6 try this link :
www.puritan.com
and ceck this post too ...
http://www.thalassemiapatientsandfriends.com/index.php?topic=1118.0;highlight=ip6
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Cherieanne
Please e-mail your address to me I will send you some IP6 I have some spare ,
Kathy
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Hi Cheriann,
You can order IP6 from www.puritan.com as umair said.
ZAINI.
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thank you kathy11 & zaini for your replies.
I was hoping to find out if it can be purchased through health shops or purchased as a vitamin.
kind regards
cherieann
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I went to pharmacy today and ask for IP6 ended up she say she :huh do not know what am i talking about. So i will return with phytic acid name tomorrow and see what she says. I reali hope i can get one for my little princess :biggrin
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Hello everyone...
I'm new here...
i'm from Sabah(borneo,mount kinabalu)...parts of malaysia....
My son now age 4 also being diagnose as thalassemia major since age 1. I've tried the ip6 before and it's look promising,I start using IP6 when his ferretin level is 5903(3 yrs old) after 3 months his ferritin shown a good number at 3309.
Normally i gave the ip6 1 hour before breakfast,usually at 7am and using the desferal at 9pm before sleep,does this ip6 got any specific time to take in between desferal?
The big problem now is i have to stop the IP6,supply is hard to get here in my country. the one and only bottle that i have got before is thru my aun which that time on holiday to Singapore. The cost too a bit high so i only manage to buy one.
I really hope anybody out there that got any info on where to get this in my country Malaysia. I.ve tried contact to few clinic and pharmacy but with no luck.
One more thing i wanna ask u all, as for now hospital in my area is out of stock for subsidies the pump,so the doc told us to do the 20 minutes procedure(Bolus) the other way on how to pump the desferal. So i have to sit by his side to do the pumping with my hand. Have any of u having this experience before ? will this way worked like the 8 hours pump does ?
Sorry for my bad English.
SUE
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Sorry Sue for taking so long to reply but I had to think how to answer your question.
My specialist told me that the longer desferal is exposed to our tissues, the more iron will be excreted. So I would have to say that 20 minutes of pushing can not come near to 8 hours of exposure. I would think.
Have you considered going IV with a drip. That was how mine was administered before the pump.
The dose was 3 grams a day mixed with 5 ml of water and then added to 2oml saline in drip chamber. The drip rate was 1 drop every 15 seconds. This was administered nightly from 7pm to 7am estimate.
Maybe this is another way to go until the pumps are available.
I hope that I have given you something else to look at.
Take care.
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Desferal only works while you are taking it, so the longer period of time you are using it, the more iron that is chelated, even if you are spreading the same dose over a longer period by diluting the desferal more. 5 vials will do much more if you take them over a longer period of time than 10 hours. This is a proven fact. With desferal, the length of time taken is just as important as the dose. 24/7, which means 24 hours a day, 7 days a week is often recommended, as the effect is dramatic in ferritin reduction. What you need to strive for is extending the period you are taking. You can dilute the desferal more to make it last longer and it still has a good effect but for more time.
Took this from another thread that Andy had posted to.
This is similiar to what I was saying.
Take care
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ive got inositol, would that work tooo or does it have to be inositol hexaphostate?
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I'm not familiar with inositol hopefully one of our more knowledgeable moderators or members could answer.
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Inositol will enhance the value of IP6 (inositol hexaphosphate) but it does not have the same properties of IP6. If you cannot find IP6, it can be ordered by many companies in the US and shipped internationally.
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Thank you Andy for your knowledge. :hugfriend
I am always learning something new from you all.
Cherieann
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Andy,
Because lil A is taking a few supplements that need to be taken on an empty stomach (exjade, nigella) and I am also trying to get enough calcium into him - I can only fit in one dose of IP6 these days. Is it okay for me to give him 3 caplets at one time rather than the prescribed two?
Thanks,
Sharmin
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Sharmin,
You can take IP6 once daily if necessary. I don't think nigella needs to be taken on an empty stomach. It's used regularly as an herb. Ambareen suggested taking it after meals. http://www.thalassemiapatientsandfriends.com/index.php?topic=2639.msg26081#msg26081
The best way to take Nigella seedz is by grinding them. and keep it in a bottle and a bottle of honey beside it on your dinning table or near you computer coz ppl never 4get to sit on the computer no matter wht happenz isnt it..!!! so tht you ever 4get it, and have it after every meal, for babies just a pinch of the powder mixed with honey on you palm n let the baby have it
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Thanks Andy, that helps!
Can I give him 3 or 4 IP6 caplets at once ?
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I don't think he should take more than two caps at a time. Is there anytime between meals he can take it? It doesn't have to be more than 30 minutes before a meal.
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I will work on that Andy. Especially right now, with the extra transfusion - I don't want him to have iron damage.
Sharmin
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Good luck Sharmin
manal
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Thanks Manal,
I gave him IP6 3 times today! Giving nigella with food has been a good thing!
Sharmin
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GOOD LUCK Sis , and GOOD LUCK Lil A ....
Best Regards
Umair