Tapering off Jakafi

[Jwake2]

I have progressed to Acute Myelo Luekemia (AML) from PMF . So, I am supposed to stop taking the 15mg Jakafi for the chemo treatment of the AML. I skipped a day of of 15mg, just to see, and my body did not like that at all!! I've been on Jakafi for approx 1 year.

With the 5mg Jakafi I have on order, how fast/slow should I taper off.

Thank You Very Much,

Jim W

[ainslie]

Jim , I would be very careful with the taper, you need to ask your Haem, definitely don’t skip again, most taper maybe by 5 mg every few weeks but don’t do anything until you speak with Haem team, good luck

[Cja1956]

Youre not supposed to stop taking that suddenly. I would continue taking the pills you have until you receive the 5 mg and start taking that until your doctor says otherwise. I wish you well.

[hunter5582]

Will agree with the others and say to stick to the taper your doctor has prescribed. Ruxolitinib Discontinuation Syndrome can have serious adverse effects. The gradual dose reductiuon s essential.

[JediReject]

Hey Jim, , , When I tapered off Jakafi prior to SCT my Consultant Haematologist drew up a planned decrease over several weeks in 5mg reductions which I had to adhere to. . I appreciate that I had the benefit of a timescale which given your circumstance may need speeding up if possible. As others have said DIY and guesswork isn't an option. Your situation is complicated by needing Chemotherapy and i dont know if the two treatments can coexist. I would press for definite guidance.

Good Luck going forward

Chris

[socrates_8]

Hey Jim...

Sorry to hear about your AML diagnosis... That's a tough break ... I've been on Ruxolitinib for quite a few years now, and what others have mentioned about "Tapering Off" is really important. There is such a thing known as RWS, (Ruxolitinib Withdrawal Syndrome), and it can prove most uncomfortable...

Jedi Reject's advice is sound, and if I were you I would be seeking the guidance of your MPN Specialist on how to best move forward with this...

Best wishes & naturally hoping for the best outcome for you Jim...

Steve

(Sydney)

[beetle]

I am very sorry to read that you have progressed to AML. That is a very frightening diagnosis. Do you yet know what chemotherapy medication they are planning for you? If it is Azacitidine I am wondering why you are tapering off Ruxolitinib. The two drugs together appear to work synergistically together giving better results than either on its own

I hope your care is being directed by someone with in depth knowledge and understanding of MPNs and AML. If this is not the case I would recommend that you find a specialist ASAP

I am currently being treated with both Ruxolitinib and Azacitidine and am just about to undergo a bone marrow biopsy to determine the success of the treatment after 5 cycles of Azacitidine. I have had persistent cytopenias during this treatment regime but I know of several folk who are not suffering this complication and are deriving benefits from the combination of medication

Please do your own research into this. There is a wealth of articles online from reputable sources suggesting the benefits of using ruxolitinib and Azacitidine together

Let us know how you get on and I wish you great success with your treatment. Jan

[Jwake2 in reply to beetle]

Beetle.......Great Info. Yes, Azacytidine is also on my menu soon. I get a CBC tomorrow, then meet with my local Hemo/Ocologist to map things out. I just got off the phone with Incytes Care(mfr of Jakafi) and it is remarkable how little(none) info they would give me on tapering of. I do understand the liability issues they have. The most info I have gathered has been right here.

BTW, 5 cycles Azetidine seem extreme?

Thank You VERY much

[beetle in reply to Jwake2]

I hope you took on board the fact that ruxolitinib and Azacitidine work well together therefore no need to taper Rux

Five cycles of Azacitidine is minimal. I came across someone who’d had over 100 cycles. I’m assured that the side effects become less problematic after about five cycles so I’m keeping my fingers crossed.

I’ve just scraped through the latest blood test today so cycle six can go ahead next week. I really wish you all the best with your treatment and please feel free to contact me and if I can answer your questions I will do my best to help

Best wishes, Jan

[Ds7810 in reply to beetle]

How many mg Ruxolitinib do you take with Aza? Also do you take venetoclax too?

How are you doing with this combo?

[Meatloaf9]

So sorry to hear of your progression to AML. Best wishes going forward. Hoping you can access treatment from a medical team and institution that is well versed on treating AML. Best always.

[jointpain]

Hello Jim, I have messaged you, (in the chat icon second from the left at the bottom of the page. ) I asked what were your typical full blood counts were to be told you had now AML? My wife has now a very high neutrophil count of over 70, when it should be in single figures, and her red cells are getting lower. She has been diagnosed with MF, five years ago.

[Heidi-W]

Dear Jim

Really sorry to hear about your disease progression. As the others have outlined you need a definite plan with your heam team to withdraw slowly to reduce the chance of the withdrawal side effects. Hope you get some joy with them and wishing all the very best with your upcoming treatment for the AML. Good luck

Heidi