Cheap Exjade

Hi. I have just joined as a new member.

I have been told by my doctor to switch from L1 to Exjade due to joint pains in my knees. I currently live in HK where exjade is pretty expensive. I heard that it is cheaper in India, Thailand and Malaysia. I thought it might be worth my while to fly to one of these countries to pick up the Exjade and have a nice holiday as well.

Does anyone know the price of a 125mg or 500mg tablet in any of these countries?
Would there be restrictions such as needing to be a National or Resident?

Would appreciate any feedback.

Thanks

Hi Jack

It cost around RM 3200 per box (28 capsules) for 500mg tablet in Malaysia.

How much 500mg tab Exjade is selling in Hong Kong?

Thank you.

Hi jack :
   To the Family ...
 

Hi Jack,

Please refer to the advice given about L1 in our threads at http://www.thalassemiapatientsandfriends.com/index.php?topic=1775.msg14810  and
http://www.thalassemiapatientsandfriends.com/index.php?topic=1819.0

It may be possible to continue with L1 if the joint pain can be relieved. Pay special attention to the advice given by Poirot, as he has used L1 for many years and also faced this same problem and was able to find a solution.

Andy - Thanks for highlighting those links to me.

I have been on L1 since 1991 and agree the drug has been effective. My ferritin has fluctuated between 500 and 1700 over the years. It has only been in the last 2 years that the pain increased dramatically in my knees. I used to be very active doing sports like snowboarding, wakeboarding etc. now I can't even run.

An MRI that was done recently showed evidence of synovial thickening and other features that are described in patients with Deferiprone associated arthropathy. A paper published by Helen Burger et al documens radiographic and MRI findings of Deferiprone associated arthropathy in patients with beta thalassaemia.

Because of this, my doctor in London is switching me to Exjade. I will start taking the calcium, magnesium and Vit D as well.

Omega - Thanks for the info. I'm surprised it is so expensive there. It might be cheaper for you to get it in HK then, especially with the HKD pegged to the weak USD. It is estimated to be around HKD10,000 per month here. I will get you exact pricing once I receive it from my doctor here in HK.

Thanks

Exjade is quite expensive in Hong Kong and I have been assisting a group in Hong Kong in their efforts to get the Health Authority to cover the majority of the cost for patients. A recent statement has laid the groundwork for a possible policy change that will allow coverage for Exjade in patients who cannot tolerate desferal and deferiprone (L1). This is just a first step but there is at least some cause for optimism. My friend, Annie told me the following about Exjade's cost in HK.

i'm paying US$3000 a month for 1750 mg (daily dose).

This is almost as high as the US price. Without coverage, it is very difficult for patients to afford Exjade.

Hi Jack,

You know what ..... doctors talk about arthropathy in patients taking L1, but there are usually no control group for those studies. You develop a pain, they take an MRI and say, hmmmmm, this is due to L1. Now, here is a question, how many people do you know who suffer from arthritis and associated ailments who are not on L1?

What I am trying to say is that you should treat the arthropathy symptomatically, check your calcium and magnessium levels, and reduce the L1 dosage. And, then see if you get better. I think L1 DOES have an effect on joint pains, but based on seeing various people here in India, I believe that it has more of an "add-on" effect, rather than being an instigator. (expect possibly when you just start with L1 - it may cause knee and elbow pains.)

Question: how long since you shifted to Exjade? Has it made a noticeable improvement in your situation?

Poirot

An MRI that was done recently showed evidence of synovial thickening and other features that are described in patients with Deferiprone associated arthropathy. A paper published by Helen Burger et al documens radiographic and MRI findings of Deferiprone associated arthropathy in patients with beta thalassaemia

Poirot

I have stopped L1 for 3 weeks now and will start Exjade in the next week or so. I started L1 back in 1991 and it is only the last year that the knee pains got really bad.

The people I know that have arthiritis or similar pains are old!! I'm in my late 30s and previously very active. The question is, do patients on exjade suffer from arthritic joint pains?

I will get my Ca and Mg levels checked and start taking the supplements though.

I have stopped L1 for 3 weeks now and will start Exjade in the next week or so. I started L1 back in 1991 and it is only the last year that the knee pains got really bad.

Have your joint pains reduced since you stopped taking L1?

And, you mention that you have been on L1 since 1991 (welcome to the long-timers' club!) - have your knee joints steadily worsened over this period of time or is the pain of a more recent and acute vintage? Any information will be appreciated.

Thanks

Poirot

hi..i am from greece.i have thalassemia.i try exjade for 2 years and i am so good as i wasnt never.i have in stock 10 exjades of 500mg.if someone want to buy this in a better price,let mail to me in
andreas_kouk@hotmail.com

Hi Polina ,
  to the Thalpal , i hope you will find this community very helping , caring and encouraging .
soo stay in-touch with us and keep posting ,  feel free to ask, wat ever you want to know abt , and dont hesitate to share wat ever you want to share with us .... 

Best Regards
Take care
Umair

i must introdused my self but please dont lauph,my engilsh are not so good.
i am from greece as i said,i am 36 years old and i have a farmacy shop.
i am married and my wife help me a lot with my problem.as you know you have to de cared a lot.
i had iron 6000 and know with exjade i have 400 and i am keeping going down.i also taking testosteron,calsium hydroxyuria and a lot of good greek food.
i read that some of you buy exjade in to high prices.i have some in my farmacy.if someone want them he/she can ask me whatever she/he wants.
thanks

Hey Polina ,
dont worry , you are too good at english than me ..
its nice to hearr from you and to hear that another 36 year old thalpal ...
here on this forum you will find many your age fellow thals ... as i know some of them ..
good to hear abt a married thal  .. 6000 its realy high SF buddy .. take care of your self ..
its realy nice to know abt you ...

Best Regards
Take Care
Umair