Jakafi issues

[ggrana]

I have been taking two 10 mg a day since September 2023 and my platelets are now 1.3 million where it was holding them in the 700’s. Does anyone know if it stops working after such a short time? My hematologist is prescribing me an extra pill a day, which seems like a Band-Aid over my problem.. just wondering if this has happened to anyone else, thank you

[EPguy]

Were you on Besremi while PLT was 700's? I see an older post your PLT also went high at one point on Bes. Did it go down after that. What dose of IFN were you on?

The Rux dose of 10BID is a standard starting point for PV. From a report I posted a while go, the average dose went up from that, so requiring more for PV is not out of the ordinary. But three pills per day is not the normal dosing, it's usually to adjust the amount within the two doses.

[Ebot in reply to EPguy]

Hi. Just to respond to the Rux dosing issue. My platelets have plateaued after a year on Rux (the Mithridate trial) - and not quite in the right place. My haem is talking about introducing an extra pill per day as a tweaking measure. Go slow is the guiding principle. Just waiting for more results before deciding if, and in what measure, to up the dosage.

For what it’s worth my dose has crept up over the past year, I’m currently on three pills (15mg) twice a day. So I may well end up on seven a day shortly.

[EPguy in reply to Ebot]

Good point on the quantity of pills. If, for example, it's two pills in the AM and one at night that is 3 per day but still matches the label two doses per day method.

I suspect my PLT is also stable at ~400, higher than it was on Bes but not a concern for me or my Dr.

[lizzziep]

I have changed from Rux (jakafi) to Momelotinib, it is similar in some ways to Rux, my platelets crept up and then jumped high! So I am now on an additional drug - hydroxycarbamide, which has brought them down to normal levels, I’m hoping this can be reduced over time. Other counts are ok, my haemoglobin is a lot better than it was. So I think it is “normal” for platelets to rise on Rux, your doctor should monitor that.

[ainslie]

as far as I hear from haems there is no evidence Rux loses effectiveness for PV with time.

Your on about average dose at 15BID for PV , 60% of PV patients need more than 10BID and 10% need less.

[socrates_8]

You may need to increase the dosage to 20-25mg b/d(?)

I am also on Rux' w/ CALR (2) w/ very high platelet regime. Currently on 20mg b/d platelets somewhat stable in low 800s... When they bounce upward, ( I take Methotrexate to bring them back down again), for a short period.

For me, this is the 'status-quo'. Up & down on my MPN roller-coaster...

Steve

(Sydney)

Post ET / MF

[EPguy in reply to socrates_8]

Interesting on the MTX, it is sometimes Rx for Sjogrens. There aren't many meds that reduce PLTs so MPN pts with certain autoimmunes might benefit. But combined with Rux that is a lot of immune suppression. I assume that's why you keep it to short periods.

[socrates_8]

Thanks for the Post EP. Yes, at times I regulate between that & returning to the higher Rux dose, (25mg b/d). However, the induced anaemia / fatigue is just too much at times...

And over time, I've been able to reduce the MTX weekly dose from 10mg - 5mg, (Megafoil) every other day of course...

Hence, I was never able to tolerate well HU, (but it did have a marked effect on Pts reductions), and then discovered that the MTX works at helping reduce the Platelets... Whereas, Rx has grown less likely to suppress Pts alone it seems. Hence, dose titration etc...

Same old MPN roller-coaster remains somewhat effective at this juncture...

Interestingly, most of the literature does not agree on whether or not 'Higher Platelet' regimes help to induce TIAs. Nevertheless, after X3 events, all have coincided w/ Pts over the 1M benchmark. My lack of belief in pure coincidence being the culprit suggests to me to see this as a definite 'red flag'. So far, so good...

[ainslie in reply to socrates_8]

Interesting about using Methtrexate to reduce platelets, it is gaining traction as a Jak inhibitor and is being trialed at Mount Sinai for ET. I have a PV friend who is on it and she reckons it is controlling her PV with no other meds or venisection.

[william-Indo]

I'd experienced the same condition, even at the max dose (2x20mg) and need phlebotomy 450cc every month.

Got new MPN doc in early 2022, who added with Pegasys 135mcg every week (combo) and it work till now.

In a year, Jakafi dose has reduced to 2x10mg and Pegasys 135mcg every 8 weeks till now.

No more phlebotomy in last 2 years

Cheers

[ainslie in reply to william-Indo]

Congratulations on getting it sorted, the max dose for PV is 2x25, I’m on 22.5+20, I noticed the extra 2.5 made a difference, we are all different of course