Things you trying

Your Welcome Sis ,

Umair

    Really ? then I must take that as well, I'll have to check if it is available here in country 
    My sister takes lyrica(pain killer) for her diabetis, and she also have a weaker bones compared to mine.... She is given a vitamin D also. I'm regularly taking Vitamin E folic acid and B complex but i was not advised to take vitamin D.

     

Vitamin D is now believed to be necessary for all thals. This is something I heard many times at the Singapore conference and it is very good advice. Even non-thals are now being told to take more D and the child requirement for vitamin D in the US has just been doubled. When I talk to thals I always insist in vitamin D now. Unless one gets a real lot of sunshine, supplementing with D is needed.

This is a good example of some of the things that were there at the conference for those paying attention. I agree that the conference was weak in total content but there were still important things to be learned. This particular subject of vitamin D was heavily emphasized by the doctors and I think many people may overlook its significance.

Andy,

I want to start with a multivitamin. I have never taken any multivitamin, reading the posts by members, I feel the need to start with it.

I was prescribed L-Carnitine tablets cause my carnitine counts were pretty low. I took it for a month or so and stopped it on my own.

Its the transfusions, chelation and alendronate tablets and folic acid I am on, nothing else.

Sharmin mentioned about a multivitamin named Centrum Silver by Wyeth. But, its not marketed in India.

So, if you could just let me know some other multivitamin that doesn't have iron in it would be very helpful of you.

Thanks in advance.


\peace/

Hello,

I mailed Dr. M B Agarwal regarding the multivitamin thing. Ha mailed me back saying, "You must never take vitamin containing iron. You must tell you friends having thalassemia major to stop taking vitamins containing iron. It is dangerous."

He's prescribed me Capsule Zevit once a day.

Capsule Zevit conatins-
Zinc, Vitamin B1, B2, B3, B5, B6, B7, B9, B12, Vitamin C.


\peace/

Hmm...This is a long list of meds..and when ever i start anything new,like i just started vitamin E,my daughter goes like "mama!! one more ? " 

She is on
1- Ferriprox -thrice a day
2- Desferal -thrice a week,six viles per week
3- IP6- Twice a day
4- Wheat grass -half cap daily
5- Folic acid- 1 gm

Chewcal (GlaxoSmithKline) which contains
6- Calcium- 400mg (it says elemental calcium,does it make any difference?)
7- Vitamin D- 100I.U

Vidaylin (Abbott laboratories) which contains
8- Vitamin A- 0.9mg (3000 units)
9- Vitamin D- 10 mcg (400 units)
10- Vitamin B1- 1.5 mg
11- Vitamin B2- 1.2 mg
12- Vitamin B6- 1.0 mg
13- Vitamin B12- 3.0 mcg
14- Vitamin C- 50 mg
15- Nicotinamide- 10 mg (I am not sure what's this  )

Tokosvit which contains
16- Vitamin E- 400 I.U

And when ever she is on desferal i ask her to skip Vidaylin and instead give her half tab of Abocal which contains:
Vitamin C- 250 mg
Vitamin D- 200 I.U
Vitamin B6- 5 mg
Calcium carbonate- 335 mg.

Andy,is this list enough?

Zaini.

P.S She is also taking carao right now.

Zaini: can i know what form of Wheatgrass? and from where you getting it? and from where you bought tokosvit? i tried but i cudn't find it

and what is IP6??

Sharmin & Umair: yes his Bone Density test has been done while he was admitted and doctor have told us that he do have weak bones. but they never told us about pyshio or any exercise,

okay here is what we are using these days:

Me:
desferal 5 times a week, 20 vials per week
Vitamin E (I got evion 200 mg)
Vitamin C (Cecon 500 mg)
Qalsan (Calcium)
Alpha Leo (Vitamin D)

Salman:
Desirox 1000 mg per day
Vitamin E
Vitamin C
Qalsan
Alpha Leo

anything you guys thing we should change or add?

Ayesha,

We are using wheat grass in liquid form,i.e wheat grass super shotsfrom www.drwheatgrass.com,my father has a friend abroad who sent it for my daughter.I bought tokosvit from a regular medical store,i am amazed you couldn't find it,try some big names like times medico or kausar medico.When are you going for transfusion,i can bring it for you if you want me to,my daughter's transfusion is on coming saturday.

IP6 is a natural chelator and an antioxidant,it can not replace regular chelators but it does help in chelating,Both me and Sharmin noticed a change in our kids skin colour when we started IP6,my daughter's skin looks much lighter now.

Zaini.

Zaini: thanks alot will check Kausar soon, and if i didn't get it i will let you know..

do you feel difference after using Wheatgrass? and what is the form of IP6? and from where it can be bought?

M asking too many questions I know.. sorry for that

Hey NO Worries,

Questions are welcomed here on this forum  When my daughter started wheat grass,i noticed a significant and very visible change in her energy levels,it gives her a lot of energy.

IP6 are capsules,unfortunately not available in Pakistan,you can buy them online from www.puritan.com .

Zaini.

perfect! thanks alot !

what else you guys think we should do? or take as medicine or natural supplements...

any suggestion any advice?

Ayesha,

If you are taking 500 mg of Vitamin C daily,it's too much.

From http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

Vitamin C 100-250 mg taken with desferal (helps more iron to be excreted). Do NOT take more than 250 mg daily if thal. Too much iron can be freed into the bloodstream where it can cause clumping in the heart, causing lowered heart function.

So cut it down to 250 mg max,and take it only when you are taking desferal.

Zaini.

I couldn't find any tablet containing Vitamin C in power of 100 to 250 :/

so Vitamin C is not necessary daily???

and Zaini can I have the direct link to IP6 web-page?

I couldn't find any tablet containing Vitamin C in power of 100 to 250 :/

Take half of the 500mg tablet Ayesha, remaining half can be taken the next day ;-)


\peace/

Vitamin C may be usefull for any other non thal person on daily basis,but thals should take it only when they are taking desferal.This tablet you are taking is a water soluble one or you are swallowing them?
I give my daughter Abocal,i cut it in to 2 pieces,giver her half tab when she takes desferal.you can also take half tablet,it will divide your dose in half i.e 250 mg.

Direct link to IP6 web page is
http://www.puritan.com/antioxidants-040/ip-6-inositol-hexaphosphate-capsules-005745

Zaini.