Hello, I'm transitioning from hydroxyurea to jakafi and would like here from others who are on jakafi. What should I expect?

[Cbreeze0182]

Should I be worried?

Are the side effects bad?

[Rachelthepotter]

Hi. I felt very much better when I moved from hydroxyurea to Jakafi ( under its genetic name of ruxolitinib - rux to its English friends) BUT I wasn’t warned that rux can trigger very rare and nasty aggressive skin cancers called sarcomatoid squamous cell carcinomas Especially if you have a history of sun exposure and any kind of sun induced skin cancer before. BCCs ( basal cell) or ordinary SCCs

So do keep an eye on your skin if you come into this category.

Regards

Rachel ( MF : JAK 2 )

[Cbreeze0182 in reply to Rachelthepotter]

Thanks for your reply.

[Ettiel in reply to Cbreeze0182]

I was put on Jakavi about four months ago after being diagnosed with post PV MF. I felt better almost immediately, itch on arms and legs almost gone, reduction in spleen size allowing me to enjoy my food again and feeling generally better. I’ve experienced no unpleasant side effects as yet. I still become fatigued easily if I don’t take care but so far, fingers crossed, I’m very pleased with this medication.

Good luck with it. I’m sure you’ll benefit from it.

Ettiel

[rkhabtec in reply to Ettiel]

Me too

[Dustydog65 in reply to Rachelthepotter]

I have had PV for 18 years and have been on Jakafi for two years and it worked perfectly to stabilize my blood levels. Platelets came down to a normal range which I had not seen in years. However, starting last year, I developed several squamous cell carcinomas on my scalp and face and a sebaceous gland carcinoma at my hairline. Have been thru several surgeries to have them removed and have since modified my Jakafi dosage to a half dose. Treating these carcinomas has been hellish so this drug may not be for everyone.

[Osteomyelio]

Difficult to predict because people respond differently. In my case, when I switched to Jakafi I got infections. But there is no proof it was due to Jakafi.

Although, I am no longer on Jakafi- I don’t regret trying it because it was an opportunity for me to possibly benefit but being on it.

[MCW22]

How are you being transitioned? I was changed over immediately. One day hydroxy, next day rux. I was dizzy for a couple of days but no other side effects. The rux has brought most of my numbers into range except whites which are still in high 20s. Slightly anaemic now too but that is being balanced out with a few iron tablets.

Carol

[tracey13 in reply to MCW22]

My husband's white cells are 17 all his other bloods are in range .

[Cbreeze0182 in reply to MCW22]

I'm coming from 1500 mg of hydroxyurea to 500 mg of hydroxyurea for a week and then I will start 10mg of Jakafi in January.

[tracey13]

My husband is on jakafi no side effects at all he takes one at 6pm and one on a morning before work. He still takes two hydroxy per week too.

Don't be afraid just take it in your stride.

Tracey

[Rachelthepotter]

Meant to say as well: - Jakafi can reduce yr Hgb for a bit but it usually picks ip again. Can take a month or two.

[darcey]

I was on it for about a year before I had a bone marrow transplant. It helped me and had I had no side affects.

[skipperL]

Going on Rux was the best thing that has happened to me since my diagnosis of MF - hydroxy didn’t do anything for me. I immediately felt better - no more night sweats, awful itching and fatigue improved. I still have to have monthly transfusions though.

My only worry is that I have heard that it stops working after a while. I do not seem to have any obvious side effects. I hope it works for you - good luck.

SkipperL

[rkhabtec]

Hi I was diagnosed with PV the end of Jan 2018. Started with Jakafi 20mg 2x a day. It has kept my blood work where it needs to be. Feb 1 2020 will be 2 yrs. More energy no aches no pains. No migraines or head pressure I use to have. I am 69 will be 70 May 5th. I still work 40hrs a week with no problems. Better attitude I am thankful for it. Wishing you the best

[Cbreeze0182 in reply to rkhabtec]

Thank you. I'm 57 and will 58 in February but I had to retire this past February because of all the side effects from hydroxyurea.

[MichaelS]

I was on hydroxy for about 30 years due to PV, and in 2010, or thereabouts, it turned to MF. I was put on 20mg Rux twice daily, in 2013, but it made my platelets drop very low, so I was completely stopped of any blood drugs for about 3 weeks. Since then i have been on 10m twice daily. Immediate improvement in spleen 'disappearing' and no mouth ulcers, which is a a well known problem with hydroxy. Also redness and roughness on the face stopped, and I felt better!!

I have had 2 skin cancers and operations, very probably because of the Rux. I am now 73 and I'm still active, but now have arthritis in my right hip, probably nothing to do with the Rux.

My advice is to try it, but make sure you are seeing the consultant and having blood tests often when you start.

Best wishes for 2020 and beyond, to all readers

[Cja1956]

Over the last nearly 12 years, I’ve been on Hydroxy, anagrelide, ruxo, and Fedratinib. Ruxo was my “favorite “ with the least side effects. It reduced my spleen so I could eat more and and had more energy. I had ET Jak2 positive but when I was diagnosed with myelofibrosis in September my new hematologist took me off of it and that’s when I started Fedratinib, along with Hydroxy.

All the best on your mpn journey.