Where Can Jakafi Be Bought? (Page 2)

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

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21

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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22

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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23

Hello!

My father is suffering from post Essential Thrombocythemia Mylo Fibrosis. The MF started around 3 years back. Last 1 year blood transfusion was effective. Now it is not responding well. The Hb is around 6.3 & Pt counts are 96000. Doctor has suggested Jakafi. I would like to take suggestions as to how much the cost of Jekafi is in India and how long the treatment is to be taken at this stage. Please provide information as available with you. Thank you

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24

Is ruxolitinib of jakafi available in what pharmacy

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25

Mike, I am buying JAKAVI (Ruxolutinib) from Mount Elizabeth Hospital in Singapore. 56 x 20mg tablets cost me approximately SG$9680.00 and when I leave I get 7% tax back

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26

Can u pls tell me in Singapore from which pharmacy u bought jakavi. I will be grateful.

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27

Dear Sir, I was buying Ruxolutinib from the pharmacy in Mount Elizabeth Hospital but it must be by prescription and ordered from the specialist there, Dr Patrick Tan. FYI, I have stopped taking it as the effect it was having was minimal and the cost is excessive and I am now having inj's. of 40,000 units of EPREX every 2 weeks, in Indonesia where I live, and I have been able to get my Hemaglobin up to 9.8 from 8.2. I am taking pain killers for the constant headache that I have. My spleen is now very large and uncomfortable but there is nothing else I can do and my future is now in the lap of the Gods.

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28

I am diagnosed with myelofibrosis and am on transfusion. my CBC, hymogrobin falls upto 5.5. my platelets are between 40 to 60 thousand and hence I could not have jakafi please advice.

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29

Dear all readers. If you have been following my (sporadic) messages you will see that I stopped taking Ruxolutinib as the cost was too high and the results were not as good as when I first started. Dr Tan from Mount Elizabeth Hospital has now got me on hydroxyurea and the results have been astounding. My spleen has shrunk by my estimates about 35%. I am taking 40,000 units of Eprex every 2 weeks and my haemaglobin is up to 10.9. The only side effect that I have had is some small sores in my mouth which I cleared up with a gargle of peroxide for a couple of days. I will go back the MEH in 2 weeks time for another check but at the moment I am extremely pleased with the results and when you consider that I was advanced stage 4 myelofibrosis when I first went to see Dr Tan and only 3 weeks ago when I went to see him again after an absence of more than 8 weeks, my spleen had grown and was about 6cm below my naval and I was suffering weekly bouts of illness where on a couple of occasions I truly thought that it was the end, to now, where I am better than I have been for several years and it has been 2 weeks with no illness and still feeling great. I know that this may not work for everyone and I am blessed that it is working for me, for which, I am truly thankfull.

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30

I have been on the drug for 7 months at a dosage of 15 mg twice a day for a total of 30 mg. In June started to "feel" bad but could not be very specific and blood counts looked good.

I did see my WBC dropping (Good? but did it get too low?), and my RBC and Hemoglobin counts going down but, at the time, still normal. Assured all was fine. Four weeks ago woke with horrible headache and within 4 days fever of 103.8 F. But my WBC showed 6.1 and no infection. How can that be?

Was hospitalized for 2 weeks and never a diagnosis of where the fever was coming from. In the meantime, RBC and hemoglobin dropped below normal but PLATELETS are up so having to take aspirin. Decided to come off the Ruxolutinib and now need to consider if I want to go back on. It has helped my fatigue and my muscle/joint pain. I was almost in a wheel chair and it started to turn that around dramatically.

Since your experience was some time ago, can you please provide me an update? Did you get off the drug, stay on, get better, etc.

Thanks so much!
Joyce

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31

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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32

Jakafi is still at experimental stage, though launched quite recently in India, buying it involves long process, but then its very very expensive and almost very difficult to afford. Every time we have to buy this medicine, we face lots of problems, despite paying exuberantly. Extremely sad to experience the worst state of affairs of the Distributors and overall conduct of the MR involved in India. They charge you and then act rude. Almost every time me or my parents have to go through a long hassled process to get the medicine. Almost cried twice to get this. Instead of being compassionate to the patient, they behave like god. Its becoming a life saving' dependency' drug.

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33

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

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34

Steve, Can you please provide the contact information for the clinic in China.
Thanks.

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35

Gurcharan can you please share your experience? My father has been advised jakafi recently.

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36

Hi. I have not been able to find a Chinese practitioner in the U.S. who feels they know anything about this illness. Can you please send me contact information for this clinic/where I can obtain this medicine?

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37

Hi. My sister needs Jakafi. It's too expensive in our country Lebanon. Please do u think any country prepare this medicine with a good price?

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38

Anyone know how to buy this Jakafi in Vietnam? {edited for privacy}. Thank you

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39

Cn you please give details about the location of this clinic in Beijing?

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40

Dr. Elliott Winton
Winship at Emory in Atlanta, GA.

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