JAKAFI not working: Dr changed my med from HU... - MPN Voice

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JAKAFI not working

william-Indo profile image
15 Replies

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

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william-Indo profile image
william-Indo
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15 Replies
ainslie profile image
ainslie

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

william-Indo profile image
william-Indo in reply toainslie

Hi Ainslie,

I am on Jakafi 15mg once perday.

Thanks for your sharing.

That calm to me

Best wishes to you

ainslie profile image
ainslie in reply towilliam-Indo

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.

ainslie profile image
ainslie in reply towilliam-Indo

WilliamIf you read the leaflet that comes with your meds it says starting dose for PV is 10mg Twice a day etc

regards

william-Indo profile image
william-Indo in reply toainslie

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

ainslie profile image
ainslie in reply towilliam-Indo

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

william-Indo profile image
william-Indo in reply toainslie

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

william-Indo profile image
william-Indo

Thanks.I will asking my doc tomorrow why she prescription once perday

JP1952 profile image
JP1952

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.

william-Indo profile image
william-Indo in reply toJP1952

Thats owesome.

Hopeful I could get the same result

Buggerbear profile image
Buggerbear

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!!

hunter5582 profile image
hunter5582

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.

Wyebird profile image
Wyebird

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?

william-Indo profile image
william-Indo

Hi Wyebird,

Dr. has increasing my dose to 15mg twice perday.

Thanks for your advice

kbodh profile image
kbodh

I remember when my husband started Rux, the count went down. It took a few months for Rux to work. It will work.

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