Tratment Of Myelofibrosis With Ruxolutinb

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Steve Jacques Says:


I have stage 3 advanced Myelofibrosis and have been taking Ruxolitinib (Jakafi) for almost 9 weeks. I have had almost 50% reduction in my spleen size and my bloods have returned to close to normal. I am seeing Dr Patrick Tan at Mount Elizabeth Hospital in Singapore and I am paying for the treatment myself as I do not have medical insurance. A bottle of 60 x 5mg pills costs me Singapore$3,450.00 and I get a VAT refund when I leave Singapore if I have not opened the drug before I depart. I am taking 4 x 5mg twice a day so it is quite expensive but the results have been terrific. I can highly recommend yhr hodpital and specialist in Singapore.



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Mario Says:

Dear Steve,

My mom needs Jakafi too, where I can find it in Singapore at $3,450?

Thank you so much,
I'm from Chile

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Steve Jacques Says:

Dear all. My name is Steve Jacques and I have had myelofibrosis for some 14 years and 2 years ago started Ruxolutinib and the effects were almost immediate but my hg levels dropped and I needed regular blood transfusions. All of this was done in Singapore and i paid for it all as I had no medical insurance. In the end i stopped all medication as I found that the side effects were almost worse than the cause. My spleen is now about 65% of my stomach cavity and extremely uncomfortable. The worst for me was the constant and severe headaches that virtually stopped me from working in any way. I say 'was' because now I am in China and receiving herbal medicine from a specialist in Beijing and the have I been slow and steadily getting better. The headaches have gone and my spleen is slowly but surely decreasing in size. My blood counts are coming back to 'normal' levels and I feel considerably better. I have only been taking this medicine for a month and I am very pleased with the results. Please leave a message here if you require any information

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seabrooklady Says:

I started taking Ruxolutinib in low oral dosage in January 2015 as part of a study to help leukemia fatigue and, in my case, body/joint/muscle pain. Within 30 days my pain level was 90% better and within 60 days my fatigue level greatly decreased.

After increasing the amount I was taking, I reached my maximum amount toward the end of March 2015.

All was well until about one month ago when I awoke with a tremendous headache and severe facial pain. I ended up with high fever and was subsequently hospitalized for 2 weeks. During the time in the hospital, they took all kinds of tests, fed me with a variety of antibiotics and, eventually, steroids. The headaches went away after taking the steroids were given but, as I have been tapering off, they are beginning to return.

I have chronic sinus problems but NEVER, especially this time of the year, have I had these kinds of headaches where my entire head, teeth, jaws, etc hurt. I have been to the dentist, been checked for TMJ, etc and am so afraid that it is the Ruxolutinib. Now I must decide if I want to go back on the trial. I was taken off about two weeks ago "just in case" the headaches were from the Ruxolutinib.

I gather that simply getting off the drug does not make the problem go away immediately and was wondering, what other experiences you have had................ or others for that matter.

Thanks so much.

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T Says:

Steve,
My mom is suffering with this disease as well. Can I ask what herbal medications you are currently taking?

Thanks,
Tiffani

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