Where Can Jakafi Be Bought? (Top voted first)

Does anybody have an idea how can Jakafi be bought outside the united states? what is the price?

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Hi Tam. I have been taking Jakafi now for a little, over 8 weeks after visiting Mount Elizabth Hospital in Singapore and seeing the specialist Dr Patrick Tan. When I first got there I had a raft of tests and they found that my kindeys were badly infected (from back up of urine caused by the enlarged spleen and pressure on my bladder as well as an enlarged prostate) and my liver was also not good so I was put into hospital and given a cocktail of drugs to clear these symptoms up before administering the Jakafi.

My spleen was measured at 22cm across my stomach and estimated as having a mass of 7>8kg. I had a bone marrow biopsy and the results showed that I am advanced stage 3 Myelofibrosis ( I was first diagnosed almost 13 years ago) and I am also JAK 2 negative. After the other conditions were under control, I was given 20mg Jakafi twice a day and in the first 4 weeks, of which I remained in Singapore, my spleen reduced in size from 22cm to 19cm. My CBT show that my red blood cells, haemaglobin and white blood cell levels are [almost] normal however my Uric acid level was very high and a couple of others were out of line. For the first time in almost 12 years I am able to walk extended distances and even play 18 holes of golf without suffering extreme cramps that evening (I am 59 years old). I have been back to Singapore early last week for a follow up check and to purchase more Jakafi. My spleen has now reduced in size by almost 50%. It now measures 13cm and I have lost 4.6kg of weight, most of which is spleen mass. I am back to Singapore on 13th November for a week for a follow up check and another bone marrow biopsy to see if the medication has in fact slowed or halted the degradation of my bone marrow. I honestly never realised how ill I was as the rpogress of the desease and the related symptoms has been slow but now I am so much better and almost back to my normal self.

the drug is expensive but in my case anyway, has thus far worked very well and I am hoping that I can go onto a 'maintenance' dose next month.

I have nothing but the highest praise for the hospital staff and Dr Tan himself. The professionalism, compassion and just overall 'nicety' of them all is wonderful.

The contact for Dr Tans' clinic is +65 6731 2030.

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I am in southern Calif. I drug is now approved for sale. My Dr. is DR. Hillard. He works out of Beaver medical Center in Highland City in Riverside County, Ca. He is running a clinical trail for myelofibrosis. The medicine is working great for me. I hope this helps.

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I got Jakafi through my doctor for the treatment of myelofibrosis. We had to fill out an application for it from the pharmacuetical company, "Incyte". It has not been made available to local pharmacies, only through the way I just described.

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Lizzy, I am a New Zealand citizen living and working in Indonesia and I have jsut been to see a doctor in Bangkok as I also have Myelofibrosis and they are arranging Jakavi for me.

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Please call company Incyte. They can do something called compassionate drug treatment. This means they can send you or your doctor the drug even though it may not be approved in your country. 855 4462983 is the phone number for the company. Ask for Dr Larry Robinson. You can call me at 909 {edited for privacy}

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Hi Steve,

Is there anyway I can contact you? My uncle has trouble with his blood cell production due to his affected bone marrow. His spleen has enlarged too.

Do you need to go to Singapore to meet Dr. Patrick Tan directly or we can contact him via email/phone first? How long does it take to start receiving such treatment by Jakafi?

Thank you very much! My email is {edited for privacy}. If possible, please help to drop me an email with further instruction!

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Dear Seabrooklady. I came off Jakafi (as it was too expensive and I have no insurance) and they tried me on hydroxyurea and although the results were good the side effects were worse than the cure so I stopped taking everything except pain killers (Ultracet for pain and Lyrica as a muscle relaxant and up to 12 tablets a day at times) to try and stop the constant and often times severe headaches. When I can off the hydroxyurea I was given 8 bags of blood and 1 bag of platelets as the medicine was having a terrible effect on my blood and i decided that it was all enough and I stopped all medication and was prepared to suffer the consequences. I then met through work a young Chinese lady who recommended traditional Chinese medicine through the Myelofibrosis clinic in Beijing. I went with her to the clinic and was given a course of traditional medicine which is the worst tasting drink I have ever had, however, the first thing I noticed was that the constant headache all but disappeared and a couple of Panadol once or twice a day keeps that at bay. My blood counts were low with Hg at 7.1 and WBC very high due to an infection. I have been taking this medicine for 2 months now and my Hg is up to 9.7 and my other blood counts are normal. I have blood work every month just to monitor my condition and the doctor calls regularly to check. My spleen is SLOWLY reducing in size and has become quite soft. The explanation given is that this medicine works slowly and promotes the bone marrow to start producing blood again and therefore the spleen will get smaller. This is exactly what is happening and apart from a few small side infections I am well. My spleen has reduced by about 50mm in length and width and is now just above my naval and from about 5cm on the RH side to about 2cm back onto the LH side. I can highly recommend this medicine and while it may not be practicable for everyone to come to China and get the medicine, it is most certainly working for me and I am lucky in the sense that I am living in China at the moment. The clinic treats many foreigners from USA and Europe and has very good success and I belief sends this medicine around the world. This is not a cure, as there is NO cure for myelofibrosis but more of a long term treatment that treats the symptoms and will slowly ease pain and discomfort and allow you to lead a as close to normal life as possible. If you require any information please do not hesitate to contact me through the medium.

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Tab. Jakavi is available from India. I am into logistics of Pharma products from a few Pharma companies.

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That is correct, it is currently still in the investigational stage, so it hasn't actually been approved and isn't publicly available anywhere, which also means that there is no price to give anyone.

You can learn more about it here:

https:/­/­rxchat.com/­wiki/­Jakafi/­

Are there any other questions or comments?

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I am in Indonesia at the moment, and my dad's doctor recommended him to try JAKAFI. But it is only still available in US. My dad is feeling horrible at the moment from his enlarged spleen. So I'm planning to take him to US.
Can anyone recommend me a good specialist or doctor for his myelofibrosis in US?
And how can we get JAKAFI in US?
Thanks

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Dr. Srdan Verstovsek, MD Anderson Cancer Center

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We are dr. Hilliard,s patient too. We have been taking jakafi also. We would love to talk to you. This is such a rare condition and medicine, we would like to have someone to talk to. Please call me at 909 {edited for privacy}

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Hello Raye, I am a Kiwi living and working in Indonesia and have Myelofibrosis. I have been to a specialist in Bangkok who has prescribed Jakavi. We are trying to procure the drug through my local doctor here.

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Hi, Steve,

my name is Pip. My mum has been diagnosed with primary myelofibrosis. Is there a way to get in touch with you about getting mum some Jakavi?

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Pip, I went to Bangkok hospital to see the specialist there and it turned out to be a fliasco. had the bllod tests and was found to be JAK2 negative but the specialist said " no problem it will still work" I came back to indonesia where I have my own business and we tried to get some firm information from them regarding the actual cost, did they have the drug or not and how long would I have to be there for it to be administered and the dosage regulated. The long and short of this is that they could not answer my questions, they did have the drug then they didn't and then I got a disgracefull e mail from the specialist that basically said, I have answered these questions, I am not going to answer them again, I am tired". I was so disgusted that I wrote him a very direct e mail and what resulted was a call from the hospital administration saying that they could not adminisiter the drug, it was very expensive and difficult to get and there was too much paperwork involved. You can make your own conclusion from this but I would NOT recommend anyone going enywhere near Bangkok Hospital. I have since visited Dr. Patric Tan in Singapore and he is a wonderful and talented specialist and will be starting treatment with him as soon as they have the drugs

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Mike, I live in Indonesia and I am purchasing Jakafi from Singapore from Mount Elizabeth Hospital

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Steve, thank you so much!

Could you pls help to let me have an idea of the cost?

My uncle is going to have response from Mt. Elizabeth next week & prepare for a trip to Singapore in November too.

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Tam, the drug costs me Sg$3,451.00 per 60 tablet bottle tablet bottles. That is Sg$57.51 per tab x 8 = Sg$460.08 per day. As I had not opened the last lot of Jakafi (4 bottles that I purchased, I was able to get the VAT content refunded at the airport before departing, and indeed the other drugs that i had not started to yet use. Good luck and I will be there from Oct 14 to 19th

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Hi Tabitha,
Is it trial available for foreigners? If a patient wants to go to AU and apply for this trial, what does that person need to do?
Thanks a lot!

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Hi Tam, Tabtha. I have been unable to get on a trial so I have had to pay for the medication full price through Mount Elizabeth Hopital. I am now in my 3rd month and during my last visit I was put straight into hospital and give 6 liters of blood over 4 days as my hemaglobin had dropped to below 6.5 and I was suffering terrrible headaches, lack of energy and etc. I have had my dosage reduced to 4 tablets per day but my spleen has started to grow again. It has grown by 1cm in 2 weeks, however, the part of the blood that the use as the indicator for the progress of Myelofibrosis has reduced. I have also had another bone marrow biopsy and after 2 attempts actually got a 'good' sample. The first one was 'dry' so at least there is some bone marrow that is still working.I am waiting for the results of that to be e mailed to me. I visit the hospital again 10th December and after tests will decide whether to carry on with Jakafi or not. Remember that I am JAK2 Negative so Jakafi is not meant to work so any positive results for me are a bonus. Stay positive...

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Yes, it is available in India. We bought it for my brother in Mumbai - {edited for privacy} ## One of my friends require...

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