Ordering Exjade in Canada

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Offline souly

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Re: Ordering Exjade in Canada
« Reply #30 on: November 15, 2009, 02:20:50 PM »
Polina,
Could you tell us more about it. How much cheaper? How comes no prescription is required?

Thanks and regards,
Souly

Re: Ordering Exjade in Canada
« Reply #31 on: November 15, 2009, 03:03:34 PM »
Polina,

You mentioned that your husband take 500mg of exjade. What is your husband's ferritin and how long he is taking exjade. Is your husband thalassemia major?
Regards.

Re: Ordering Exjade in Canada
« Reply #32 on: November 15, 2009, 07:03:57 PM »
souly
in greece we take the pills in different way.for example my husband is taking exjade from farmacy shop(i have one)and that it is.ALL thallasemia patients must have sales in their medecines from 100%up to 50%.
Canadian_Family
my husband"s ferritin 3 years ago was 4000.he was taking 4 pills every day and the last resaults before a month were 196  :wink
he is taking two pills now because his hurt is clean but it is some iron still in the liver.
i will be glad to talk some day in msn for further informations about the pills...email me

Re: Ordering Exjade in Canada
« Reply #33 on: November 15, 2009, 09:22:49 PM »
If your husband is thalassemia major then why are you selling your exjade. The iron keeps building up due to regular blood transfusion and your husband will need the exjade life long.

Ferritin level of 196 does not mean it will stop there, he will need exjade indefinately.

You btw coming on this forum and selling exjade wthout subscription does create lot of questions and I hope you understand.

I am also sensing that you don't know much about thalassemia either.
Regards.

Re: Ordering Exjade in Canada
« Reply #34 on: November 16, 2009, 12:07:19 PM »
Canadian_Family
your sences are wrong.....my husband has thallasemia type b as doctors call it ,i think middle its in english.
he is 39 years old and living with him 6 years i know much(not all) for thalassemia.i dont blame you for your words beacause suddenly a person coming in the site and selling pills.i can order this pills any time and because of his is taking now two pills instead of 4 i have 2 pills every day left.so we decided to give them away to take some money.
as i said i dont know all about thallasemia but living every day with my husbund i understand a lot.this days i understood that maybe we will not having childrens if in the future my husband(he is to tired from all this pills) dont accept to have gel of testosterone with pregnyl and puregon(do you know this mediccines?)...is this enough for you and my knowleghe about thalassemia????????

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Offline Dori

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Re: Ordering Exjade in Canada
« Reply #35 on: November 16, 2009, 09:14:57 PM »
Hey Polina,

We are here only to help each other. The thing you probably don't know is that are thals also collect lots of iron when they aren't transfusion dependant or taking iron pills (dont ever do the last!!!). How came your husband's ferritin so high that he had to take Exjade?
We have alll such of those questions in our head when someone sells Exjade because someone is decreasing it's dosage.
It's a normal question. Many of us do know the pain of not having/getting babies/pregnancies or miscarriiges.

Warmest wishes, Dore

Re: Ordering Exjade in Canada
« Reply #36 on: November 17, 2009, 12:43:24 PM »
dore
my husband until his 36 years he never took something for the iron because of his bad head first and because he didnt do blood TRANSFUSION(sorry about my english).
he said to me that when he was little until 7 years old his mother didnt know that his son  has thallasemia.my husband siad that after a bad flu doctors ditected thallasemia type b.the years after he remember that he made bllod tranfusion few times.maybe less than ten.
at his 30 years old he start taking hydroxyouria and he had bad pains in the bones.he accidently saw his doctor ,doctor said to start therrapy bacause his face color was bad but he left it.i met him at his 36,he did not say to me about thalassemia and in our first vacation because of his bad bon pain he said me about his problem.we went to the hospital,we found a great doctor and he start blood transfusion and exjade.now he is taking two exjade pills,2 hydroxyiuria,1 calcium and a gel called tostran(testosterone).we go every 20 days for blood TRANSFUSION driving 200 km....this is our story...i am to happy for him because he is now too good,he is getting back his power and recently started moto cross again.the only thing that make me sad is that maybe we will not have children....but i will always have my husbund who is a big children...
now about exjade iits a good way to have some money back  from this boxes,we are not the richest people...
thanks for listening my story

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Offline Andy Battaglia

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Re: Ordering Exjade in Canada
« Reply #37 on: November 17, 2009, 04:04:51 PM »
Hi Polina,

Your husband would be considered as thalassemia intermedia because he was able to survive without transfusions into adulthood. Please be aware that his iron load built up over many years and is not necessarily seen in the serum ferritin level. He may have iron buildup in his organs, which would require continued chelation at a normal dose. If it is at all possible, he should have liver and heart scans done to assess the level of iron load in his organs. This will help to guide his chelation routine. I know these scans are readily available in Greece, so he should take advantage of this. The lower his iron is in these organs, the better his health will become, and you are already seeing how much he has improved. Please encourage him to get these scans. They are important tools to help keep thalassemics as healthy as possible. He should be in a well managed treatment program where he sees all the necessary doctors and can have his health assessed on an annual basis.
Andy

All we are saying is give thals a chance.

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Offline Lena

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Re: Ordering Exjade in Canada
« Reply #38 on: November 17, 2009, 04:41:33 PM »
Polina,

I am amazed you know so little about Thalassemia.
where do you live? Because you said you drive 200 klm to get transfused.
And as for children, in my Thalassemia Unit there are thals who have given birth to healthy children.
The only thing is to chelate regularly, your husband may have heart and liver free of iron but there are other organs too. We have talked about that in other topics. You should do an MRI for heart and liver to confirm how much iron you have in your organs - heart and liver. These exams and many more are readily available in Greece and all thals do it.

Lena.

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Offline Dori

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Re: Ordering Exjade in Canada
« Reply #39 on: November 18, 2009, 09:35:47 PM »
souly
in greece we take the pills in different way.for example my husband is taking exjade from farmacy shop(i have one)and that it is.ALL thallasemia patients must have sales in their medecines from 100%up to 50%.
Canadian_Family
my husband"s ferritin 3 years ago was 4000.he was taking 4 pills every day and the last resaults before a month were 196  :wink
he is taking two pills now because his hurt is clean but it is some iron still in the liver.
i will be glad to talk some day in msn for further informations about the pills...email me

WOW, he (with you) did a GREAT job!!!!! He could be an example for all of us! I havent reach such level yet. Im sine 6 year on aggressive chelation therapy, but at the end I will get there too.

 :thumbs

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Offline Dori

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Re: Ordering Exjade in Canada
« Reply #40 on: November 18, 2009, 09:40:17 PM »
dore
he start blood transfusion and exjade.now he is taking two exjade pills,2 hydroxyiuria,1 calcium and a gel called tostran(testosterone).we go every 20 days for blood TRANSFUSION driving 200 km....this is our story...i am to happy for him because he is now too good,he is getting back his power and recently started moto cross again.the only thing that make me sad is that maybe we will not have children....but i will always have my husbund who is a big children...
now about exjade iits a good way to have some money back  from this boxes,we are not the richest people...
thanks for listening my story

Awwwh. Yes I know the problem. I travel around 100km for treatments too. What everyone is saying is that iron while continue to come due his blood transfusion. Thats why he (we) need forever chelation therapy.

Re: Ordering Exjade in Canada
« Reply #41 on: November 19, 2009, 03:47:20 PM »
we live in a village near Delphi(ancient place)and we travel about 200 km to athens for transfusion.
my husband do 1 time a year MRI for hurt and liver ( i cant remember the numebers)but his is in very good condition.maybe LENA (she is from greece) to know LAIKO hospital in Sevastoupoleos avenue.
yesterday we made a new check in Eyaggelismos hospital about liver(NOT MRI) and that one was too good also.
fututre MRI is on 20-11-2009 at BIOIATRIKI CLINIC,tomorrow.
About if we are going to get children or not,i must saY that because of his previus high iron,he has now problems with free testosterone,total testosterone and some others .
one thing that is still low is οστεοκαλσινη και καλσιτονινη(LENA TRANSLATE PLS)
i am trying to read new things hear and learn about thallasemia so forgive if i wrote something wrong.
AND something important....a doctor in greece when we first went to hospital,said only:-THIS IS THE SITUATION WITH THALLASEMICS,I CANT DO NOTHING  :dunno
HE DID not gave to my husband to do checks,not to do tranfusion,not exjade...can you believe that???????i am still comlaining  about him in our new doctor,and do you know why?
before 50 days we lost my husband brother,50 years old with μικροδρεπανοκυταρικη(lena help και εξηγησε στα παιδια οτι ο αδελφος του αντρα μου ηταν απο αλλο πατερα γι αυτο και ειχε μικροδρεπανοκυταρικη)and do you know why?because the same doctor said to him 10 years before what he said to my husbund 5 years before....thats greece....i have pleanty things to say about doctors but i dont know so good english and maybe you bored reading

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Offline Lena

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Re: Ordering Exjade in Canada
« Reply #42 on: November 19, 2009, 04:27:33 PM »
Polina asked me to translate in english  the words she wrote in Greek:
so οστεοκαλσίνη = osteocalcin
    καλσιτονίνη = calcitonin


Also Polina writes in greek that her husband's brother came from a different father and that's why he had  sickle cell anaemia.

Anyway, Polina if you ask me I think you met all the wrong doctors- that's not Greece at all. Greece is famous now to have very good thal experts, whom the international community appreciates for their expertise. From what you have written, I can see a lot of things with which I disagree. We are not to make people tired here with all these details, I'll private message you informing you of some basics you don't seem to know, concerning the best exam centers and those which are accepted and follow the general good lines. (not BIOIATRIKI for an MRI that you mentioned).

I understand your bitterness about doctors, thankfully these are not the doctors I have met with.


Lena.

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Offline Dori

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Re: Ordering Exjade in Canada
« Reply #43 on: November 22, 2009, 03:08:16 PM »
I am so sorry to hear that.  :(  My wish is better educated doctors.

Re: Ordering Exjade in Canada
« Reply #44 on: December 18, 2009, 11:57:28 AM »
do you know if  i can sell 4 boxes unused exjade anywhere????in ebay????

 

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