Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening.
Hb, white blood, Hct etc. keep up.
Even platelets up from 600 to 1.198.
Does anyone have same experienced...?
What do you do..?
Please advise.
Thanks
HiIs it 15mg twice a day or 7.5 twice a day.
Rux sometimes doesn’t work as fast as HU and you were on a high dose HU, so it may take a while or you may need higher dose. For sure when starting Rux it is very common for platelets and possibly some of the other counts to rise temporarily, when I started my platelets were up from 600 to 750 but eventually came down to 230. I am on 17.5mg twice a day
Regds
Hi Ainslie,
I am on Jakafi 15mg once perday.
Thanks for your sharing.
That calm to me
Best wishes to you
WilliamThats very odd because Rux should usually be taken 12 hours apart, ie I take one dose at 9am and second at 9pm and I know a lot of patients and its always twice a day, is there a reason its once a day.? Also 15mg in total even if it was split 7.5+7.5 is very low dose. Usual starting dose is 10mg twice a day and 60% need more than 10mg BID. That info comes from one of my docs Dr Verstovsick (spelt wrong) at MDA in Houston who is or was Mr Rux. I suspect if you get the dosing correct your numbers will come down. There is no direct comparison but 2000 HU is a high dose and 15Mg per day is a low dose thats likely the reason your reds and whites are up, platelets will usually follow in time.
WilliamIf you read the leaflet that comes with your meds it says starting dose for PV is 10mg Twice a day etc
regards
Just talked to my doc and she agree to change the dose to 15mg twice perday.Hopeful it will work well this time.
Cross finger.
Btw, thanks to you all for sharing your experience.
Warmed regards
Maybe wise to monitor your counts every week or two until stable as thats quite a rapid jump in dose and levels can crash and secondly I wonder from what you have written if your doc knows enough about this, after all it says on the packet to dose twice daily and start at 10mg BID, if it was me I would be looking around for another doc if that is viable. Good luck
There only one Haematolog available in my city (Surabaya-indonesia).
Originaly, I got first treatment at Kuala Lumpur 3 yrs ago but has stop to visit my MPN doc sinced Covid 19 make Malaysia close it's border
Thanks.I will asking my doc tomorrow why she prescription once perday
Yes, the same happened to me when I changed from HU to Rux. I started on 10 mg twice a day and platelets rose and haemoglobin dropped. The Rux was increased to 15 mg twice a day and 6 months down the line platelets are in 400s, however, RBC, haemoglobin, and haematocrit have are low.
I started on Rux 10 mg twice a day, increased to 15 mg twice a day, and then even 20 mg twice a day, which was wiping me out. I finally asked my RN if I could go back down to 15 mg twice a day and numbers have been pretty stable.Good luck to you William!!
As the others have already stated, you are currently on a very low dose of Jakafi. Likely sub-therapeutic. You were apparently needing a very high dose of HU. It would be expected to need a higher dose of jakafi too.
Here is the Jakafi dosing guideline for PV.
polycythemia vera
[10-25 mg PO bid]
Start: 10 mg PO bid x4wk, then may incr. dose by 10 mg/day no more frequently than q2wk to max 25 mg PO bid; Info: for hydroxyurea-refractory or intolerant dz; see pkg insert for dose adjustments based on Hgb and/or Plt response; D/C after 6mo if no spleen size reduction or sx improvement; consider tapering dose by 10 mg/day qwk to D/C unless thrombocytopenia
online.epocrates.com/drugs/...
Hope you get it sorted soon.
It’s early days try not to worry. I’m not familiar with Jakafi. Others have said you a currently on a low dose maybe you have to be patient. Has your dose now increased?
I remember when my husband started Rux, the count went down. It took a few months for Rux to work. It will work.
Jakafi
Polycythemia and Jakafi
besremi or jakafi
Jakafi/Weight Gain
Dosing Jakafi 
