Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: shivika23 on October 09, 2015, 01:56:33 PM
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hi
i am shivika (26yrs thal major) from INDIA.
I am taking desferals due to which there are lot of lumps in my stomach. These lumps are causing hindrance in passage of deaferal from needle to muscle. I have tried massaging that area but its not that effective.
Please suggest me a remedy for it as i am taking only desferal as a chelation and my iron levels are very high. :wah
One more thing i wanted to ask is that i m taking fresh wheat grass but its not regularly... (as in i take 10 days and due to some reason i m not able to take the 11th and 12th day).
So is it useless to take like this ?
Is it effective only if i take it on a regular basis?
Is the juice of wheatgrass more effective than the tablets?
If yes, Can you Please Suggest me a Good Wheat Grass Tablet That I can find in INDIA ?
Thank you
Shivika
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Hello shivika.
How many hours of desferal injection do you do? Did you try to put it on your shoulder? Have you always been on desferal or were you used to take deferasirox/deferiprone?
Tablets and Juice should have the same effectiveness. It is a natural remedy, not a drug, so you can have 2 days of break, it doesn't make it useless at all!
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Hi,
As per Dr Ramanan .. wheat grass tablets or powder is more effective than fresh juice & off course it must be taken regularly ...
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Thank you for correcting me about the juice.
I thought that taking it everyday is the best, but having 2 days of break after 10 days of regular intake should decrease the effectiveness a bit but still being more effective that not taking at all!
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Taking wheatgrass occasionally will have some benefit, but I suggest getting tablets or powder so you can take it regularly. Look for dehydrated wheatgrass JUICE, not just wheatgrass powder.
I would also suggest that you add Asunra to your chelation and take combination chelation. Your problems with desferal are keeping you from chelating enough, but this is easily remedied by adding a second chelator, either Asunra or Kelfer.
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thank you so much everyone and specially Andy sir for the reply..
Hello shivika.
How many hours of desferal injection do you do? Did you try to put it on your shoulder? Have you always been on desferal or were you used to take deferasirox/deferiprone?
Tablets and Juice should have the same effectiveness. It is a natural remedy, not a drug, so you can have 2 days of break, it doesn't make it useless at all!
I take desferal 6 days a week... 3 vials in 10-11 ml of distel water for say 10 to 12 hrs per day.
No i havnt tried on my arms since my arms r very thin nd there's no flesh so its difficult to put there.
And yes i have tried every medicine that's available for thalassemc children apart frm jadue and exjade.
Taking wheatgrass occasionally will have some benefit, but I suggest getting tablets or powder so you can take it regularly. Look for dehydrated wheatgrass JUICE, not just wheatgrass powder.
I would also suggest that you add Asunra to your chelation and take combination chelation. Your problems with desferal are keeping you from chelating enough, but this is easily remedied by adding a second chelator, either Asunra or Kelfer.
sorry sir but what is dehydrated wheatgrass juice??? can we purchase it just like those capsule?
and what is the alternative of this if i am not able to get it where i am staying.
I have tried taking kelfer whn i ws 10 but then it dint suit me.
Plus even asunra reacted but still i hav recently started it with a very low dose. i hope it works.
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did u ever tried desferal on thighies ?? i used to put desferal on thighies ,, it is really easy to prick and penitrate/disolve in thighies if poked properly in sub-q site on thighies ..
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Hi Shivika,
Desferal 3 vials in 10-11 ml Dwater is the reason of ur lumps. Make 3 vials in atleast 15 ml Dwater. In addition , taking desferal is thighs is a best option for thals who are thin.
Ask Sangeeta about tricks and tips for taking desferal in thighs as she will teach u abt and nobody will even notice that u r wearing desferal in ur thighs
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Shivika,
An excellent and qualititive brand of wheatgrass tablets is available in India. Brand name is Sarvayus wheat grass tablets.
I am using it successfully with long time
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I just got off the phone with Dharmesh regarding some questions I had about Desferal. I've finally ordered it and about to take the plunge now, no more procrastinating. Being a diabetic, I don't fear needles or anything like that since I poke 3 of them daily anyway (also as if we thals fear any needles, lol).
Seeing Dharmesh's success with combination therapy really inspired me as Exjade/Asunra alone just doesn't seem to do the work in bringing the levels down.
I will be attempting to take my first dose over this or the next weekend most likely and we'll see how it goes. And I plan to go for thighs as well, don't like poking into my belly. Also that my six packs will be spoiled haha. :rotfl
Also Dharmesh, thanks for the mention of that brand of wheatgrass. Will check it out as well. Do you think it has somewhat benefited you or is worth taking?
Thanks,
Pratik
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First of all , All the best for Desferal :thumbsup
Wheatgrass is very much helpful for NTDT & Intermediate. For majors its benefits are limited. At thalpal , it is believed that it works as an iron chelator also but at a limited level.