Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: Ayesha on October 14, 2008, 05:42:50 PM
-
Hello all...
I was curious to know few things, me and Salman (brother) are on Transfusion + Desferal + Desirox right now... we are not taking any natural supplement like wheat grass or anything.
we use calcium, vitamin - c, vitamin - e tablets and Salman having pain in legs he use Pain Killers too
I need to know that what things you are trying, can I have all the details? like tablets you using, natural supplement you using, anything...
1) what is the name?
2) what is the form?
3) what is the dose?
4) what are the changes you felt after using it?
5) is it available easily? if yes then from where you buying it?
Please let me know...!!!
-
Ayesha,
I hope you are both doing well. Are you two taking vitamin D as well?
Best,
Sharmin
-
we were told to get Vitamin D injection once every three month, so we are on it!
-
I was told in Oakland that they are looking closely at pain in adult thals. I can get more details for you.
I was also told that taking Centrum Silver is a good idea for thals.
Sharmin
-
Hi Sis ,
first of all i want to say that , please avoid pain killers as much he can . i used pain killer for long periods and result came i got ulcer and sensitive stomach . i can take Fosamax ablets but bcoze of ulcer and stomach i didn't take those pills ... soo please avoid pain killer .. say him to consult to phsyio-therapist and for light exercises .. secondly keep a check on his BMD ( Bone Mass Density ) .. its a test to check the condition of the bone .... if you remember that i mentioned i had the pains in my joints and legs so i took pain killer for long periods , cause of that pain was the weak bones , when doctor treated me for weak bones , it start disapearing .. and now you all know that i m back to play cricket and Soccer with my cousins ... i m saying again , please avoid pain killers ... it could create more complications in his case .... And please dont forget to forward my message of GET WELL SOON to Salman .. and say himm that no need to worry bro , on my behalf,,
please let me know if i missed something to tell about ....
Best Regards
Take care
Umair
-
Hello Ayesha,
Chelation, Blood transfusion and Calcium tablets. These are the three things I am on like other thals ;-)
For calcium I use, Alendronate tablets. These are once a week tablets. In India its manufactured by Cipla under the brand name "Osteofos". The power of the tablet is 70mg.
For chelation I was on combination therapy for the last 36 months. Then this June I started off with Asunra (Exjade)
\peace/
-
Sharmin: what is Centrum Silver?
Umair: yea he avoid pain killers, he was on Fosamax too but Fosamax is quiet expensive so we shifted him onto Reventa 70mg (same formula) and cheap :), once a week!
Sahil: yeah my brother is on Reventa 70mg once a week, I guess you are talking about the same thing!
-
Sahil: yeah my brother is on Reventa 70mg once a week, I guess you are talking about the same thing!
Yep Ayesha, I was talking about the same drug ;-)
Apart from Reventa 70mg, is Salman on any other calcium tablets?
\peace/
-
Hey Sis,
when Salman feel's the pain , is it about half hour after having Meal or all the day ?? ...
please note this as well .. ..
-
Sahil: well he is choosy in taking chewing tablets, so sometimes he takes Qalsan [Calcium Carbonate:1250mg]
and hey Sharmin, we take One Alpha® (alfacalcidol) (vitamin D) once every day :)!
Umair: all the day sometimes and sometimes never :)
-
Ayesha,
Centrum Silver is a multivitamin, it contains most of the vitamins and mineral thals should be on - minus the iron.
Sharmin
-
Hi,
I don't think Centrum Silver is available in India. But, still I'll search. If in case its not available, any other way I can get it, if I want to start with it?
\peace/
-
Ayesha,
Like Umair said, I think that Salman should be have a bone density test. Is the pain in his joints or the large bones of the leg? Pain killers are not good in the long run, they can be bad for the liver too. Also, when people take pain killers (or even tylenol) their body can experience pain when they are not on the medication (withdrawal). Weight bearing exercise (small amount of weight) may be beneficial to rebuild the bones.
Sahil, check out this site regarding centrum silver:
http://www.centrum.com/
Sharmin
-
Hi Sharmin ,
i wasn't talking about the weight bearing exercise , weight bearing exrcise could create other problemes like fracture or anything else bcoze his bones are weak so he should avoid weight bearing exercises .. the exercises mentioned above are light and only body moving exercises , when i was admited in hospital my doc refer's me to a phsyio he told me some neck , back bone and knee exercises .. Salman should have to visit a phsyio with the refference of his Dr , bcoze doctor's advice will help phsyio to advice exact exercises ....
@ Ayesha
if his bone are weak and soft , then being late to go to doc may be create more complications like bone deformations.. i have a history of fracture i my back bone just bcoze of walking , when i was suffering to the situation you mentioned ..i also have deformation just above my left knee bcoze of walking in unnatural way bcoze of pains ... he need attention on time ...
all the day sometimes and sometimes never
it is the same to me ... he need a BMD test . hey try rich of vitamin-D vegetables and fruits .. may it will help him as well ... please check this link to find vitamin-D rich fruits and vegetales ...
http://www.healthalternatives2000.com/vitamins-nutrition-chart.html
Best Regards
Take Care
Umair
-
Whooops, good thing Umair caught that. I guess weight bearing exercise is preventative and may not be best in Salman's case. Thanks Umair:)
Sharmin
-
Your Welcome Sis ,
Umair
-
Really ? then I must take that as well, I'll have to check if it is available here in country :grin
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. :dunno
-
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 ? " :rotfl :rotfl
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? :wink
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 :dunno :dunno
-
Hey NO Worries,
Questions are welcomed here on this forum :biggrin 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.
-
its chewable :/ ok i will cut it half :D thanks!
-
Hi Sis ,
How is Salman now ??. i want to say that , Dr.Jovaria Mannan president of TSP ( Thalassemia Society of Pakistan ) is going to attend National Thalassemia Conference Karachi . She is the Doctor who treated me when i was on wheelchair, since that time i m her patient . please attend that conference and meet her i m sure she will help you .. also dont forget to take Salman and his reports with you ... perform his latest test and try to reach My doctor ..
if i have missed anything then please ask i will try to answer ...
Sorry for being late to telll this , last night when i wrote this post then electircity went off ...
and other reason is ,i m suffering again to stomach pain from last 4 days , today i went for TX and got to know that i have lost 4Kg of my weight ... i didn't believe and still unable to believe .. i thought their weighing machine is gona mad , or something wrong with their weighing machines .. but truth is , it is fourth week completed of stomach pain ... i have to visit again my doctor's clinic ..and i will visit realy soon ....
Best Regards
Take Care
Umair
-
Umair,
Try to search what is the real cause of your stomach ache,loosing that much weight is not good. Can you tell me about the venue of this conference,and dates?
Take care,
Zaini.
-
Salman Alhamdulillah improving!!!, I heard about the conference too, but do you know the dates and venue? and buddy please take good care of yourself and ask doctor about the cause of pain....!
Praying for you!
-
Venue for conference last time i heard was Regent Plaza Hotel from Nov 4-6.
I will probably attend at least one day there because its walking distance from my office
-
Are you sure about the venue and the dates Tariq? And is everybody allowed there?
Zaini.
-
Umair,
Umair,
Try to search what is the real cause of your stomach ache,loosing that much weight is not good. Can you tell me about the venue of this conference,and dates?
Take care,
Zaini.
Please find out what is causing your stomach issue, have you had an ultrasound done? Is there any associated bloating? 4kg is too much weight to lose. I hope that the doctors are looking into it. I hope you are eating properly and taking your meds.
Keep us posted Umair,
Sharmin
-
Zaini,
Are you sure about the venue and the dates Tariq? And is everybody allowed there?
Actually last saturday at my Tx i met HOD of Hussaini centre and he told me these details, and he didn't mention any invitation card or pass so i assume its open for all. but i will confirm with them again and let you know.
-
Hi all ,
i m all right .. loosing 4kg , i hope there will be a fault in their weighing machine :grin . . wat can i say more about it hhaha.... cause of stomach pain is , i think that i ate alot of rolls during the month of Ramadan ... and my stomach didn't tolerate with oily and fried foods in long run ... and once it start paining then it will take a little long time to get back on right track .... yes i m taking my medicines ... and i m okiey now ... i also have planed to pay a visit to my doctor on this tuesday .. i hope i will join you people on regulrly basis just after that visit .. sorry for being late to reply reason i have mentioned ... i m going out of citty today and i will not able to join you ... i will be rightback on 20-oct .. feeling still young to cope with diseases and pains .. INSHA-ALLAH it will be handled soon ... keep praying for me ...
about conference, i heard that it is in staring of November but i dont about the dates .. i think Tariq bro is right about the dates .... i will try to get more info to my doc and then i will reply to you .... .. you have to wait for my visit to my doc .... :thumbsup
Best regards
Take care
Umair
-
@Umair
Get well soon buddy.
Take Care!!
\peace/
-
Umair,
Have a safe trip buddy, take care of yourself. Always praying for you bro :pray
Update us as soon as you can, and don't eat any more rolls!
Sharmin
-
Umair, get well soon... praying ure stomach ache disappears soon..
-
Get well soon nice friend! :hugfriend .......Hope everything will be fine soon...... also take care always.
-
Umair, please update us on your situation and doing an ultra sound sounds very good idea
take care
manal
-
Hi Umair
U shud eat yogurt(curd). I tried for my son, seems to be working. The lacto bacillus helps! givem it a shot buddy.
Take care and get well soon
-
@ puja
thanx for a good idea , yeah yogurt works very well in case of stomach i experienced it several times ... thanx again for a good idea ....
@ Manal , Lyanne , Maako , Sharmin , Sahil ...
Thank you buddies for your prayers and your concerns , i m feeling good now ... my doc for thal told me to have TLC , DLC Tests after every 10 days bcoze i m on Ddefferiprone .. when i was suffering to stomach disturbence , i asked my local doc that should it effect on the results of TLC , DLC tests , he said , these test will help to find out the cause of pain .. i have the reports now .. and planing to go to visit my doctor ( doc for thal ) ... i m feeling fine , no pain , nothing else but the low Hb ... tommorow i will go to Tx . i will visit my doc on friday ... thank you again for the prayers ... i will update you again after the visit ....
Take Care
Umair
-
hi Nice Friend,
sorry m late, i din't read your post..
anywaz how are you now?plz take care of yourself
get well soon
-
Hi Umair
I am waiting dude, you promised that you wil edit the facebook and add me so that we can talk some more.
Come opn get well now..enuf falling sick. i want to see u up and active tomm.
luv
Puja
-
Some of these posts should be done as PMs.
-
I dont know of someone mention this already, but pain the legs is related to a shortage of magnesium.
Next month I will discuss the vitamine issue with my doc. Since a few months I take other vitamins than folic acid. I tried calcium, but my stomach didn't like that. Huge pains. I only take vit d and on my own also magnesium. Never heard of vit E. Members of an other hh forum told me about ip6?, wheat grass? milk thistle? ??? ??? ???
-
Hi Dore ,
IP6 is super , it has some anti-oxidant properties , its used to chelate iron .. and many of our forum member using it and reported that its has some amazing benefits ,, here are some links about of our disccussions about IP6 .. please check
http://www.thalassemiapatientsandfriends.com/index.php?topic=874.0;highlight=ip6+benefits
http://www.thalassemiapatientsandfriends.com/index.php?topic=1229.0;highlight=ip6+benefits
http://www.thalassemiapatientsandfriends.com/index.php?topic=1177.0;highlight=ip6+benefits
i hope it will help you ..
about Wheat Grass , some of our member using it and ,i heard that it works for them and its good for over all healthh please wait for other members they will tel you about it .....
Milk Thistle , its good for liver some of our member using it and reported that its benefits ... i hope they will reply you as well ,.....
all threee products are being used by our forum member i hope they will reply you soon .. i hope you will find satisfying answers of your questions , soon , realy soon ....
Best Regards
Take Care
Umair