Jakafi : Hi all, I was diagnosed in jan 22. My... - MPN Voice

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Jakafi

Mich1234567 profile image
3 Replies

Hi all,

I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve and then Started having an intolerance to the hydroxyurea. Continued with phlebotomy’s only as I can’t take aspirin. Platlets back up to 1100 now. Doc is applying for jakafi. Anyone else had this? Do you have to qualify for jakafi? I have heard it is very expensive.

Thanks!

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Mich1234567
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EPguy profile image
EPguy

I've seen posts here from Canadians that the health system is fussy about some approvals. But Jakafi (Rux) is well known as an option for those intolerant to HU.

For the US FDA:

<<(Rux) is approved by the Food and Drug Administration (FDA) for the treatment of patients with PV who have had an inadequate response to or are intolerant of HU>>

ncbi.nlm.nih.gov/pmc/articl...

So you should have a good case with an approval if there is similar indication in Canada.

My Dr leans toward Rux, saying I would feel better on it. For now I went with Besremi in hope to get the unique benefits of interferon (INF). Did your Dr also discuss INF (either Besremi or Pegasys) and the benefits/risks of each path?

hunter5582 profile image
hunter5582

Others from Canada have reported that they could not access Jakafi. Not sure of the status f this or if it is an issue specific to certain provinces. You would also have the option to consider Pegasys or Besremi (when it is available).

Hope you get access soon,

tracey13 profile image
tracey13

My husband is on jakafi we live in England. It took a long time for him to get it approved. He had to have a bone marrow biopsy which showed mylofibrosis primary stage , so he then seen the stem cell transplant team they then approved the jackafi it still took another two months for it to be prescribed.It's been a life changer for my husband his bloods are all in normal range now and he's got his quality of like back. The hydroxy absolutely drained him.

Tracey

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