Ruxolitanib

[tracey13]

POST PV MF

My husband started ruxolitanib end of February two weeks later he's developed really angry spots on his neck below his ears on both sides.

He's taking 20mg twice a day along with his hydroxy 500mg every other day.

We were wondering if anyone else has suffered with these rashes/spots and if maybe his doseage is too high.

He's constantly hungry too and craving sugary food terrible.

Tracey

[amalekh]

Hi Tracey,

I'm sorry to hear about the side effects your husband is experiencing.

I've been on Ruxo since a year, and I've gained 19 Kg eventually. I can't let a day goes by without of a couple of candy bars. Since I started Ruxo I get hungry every 4 hours, while before Ruxo I used to feel hungry every 7 hours. My haematologist says the weight gain is a good sign.

Regarding the skin issues, unfortunately I have many skin spots and ulcers, although they say it's one of Ruxo's side effects, but I believe it's part of the disease itself, because my skin got even more sensitive and wild when I stopped all medicines for one month while preparing for Ruxo.

Anyway you should report each and every effect to your haematologist to get his/her feedback.

All the luck to your husband and to all of us.

Cheers,

Malek.

[tracey13 in reply to amalekh]

Thank you for your reply,

I've read up your appetite increases as your spleen shrinks back to normal size.

The sling rashes are like an acne patch they are really red and a pit painful. I'm phoning the chemo ward on Tuesday as he may need to reduce his doseage down.

How many mg are you taking of ruxolitanib?

Main thing was exhaustion and that's now gone.

He's working on a shut down at the minute doing 7 12 hrs shifts he's absolutely shattered. This will be the last time he does these kind of hours.

I feel like he suffers low mood more now. He does manage himself and gets him self out of these low periods.

Wish there was a cure apart from SCT!

Tracey

[amalekh in reply to tracey13]

2x20mg Ruxo no Hydrea.

I think after sometime when he reaches the stability threshold with Ruxo he will appreciate the medicine and his mood will become better.

Cheers,

Malek.

[tracey13 in reply to amalekh]

We thought he was changing from hydroxy to ruxolitanib but his consultant said the hydroxy is dealing with the PV and the ruxolitanib is sorting out his symptoms .

The thing is since starting rux all his bloods are now in range they've not been this good since diagnosis 7 years ago.

I've read rux is for PV and MF .

We will see what his consultant says on June 4th .

He does feel a lot better so far. He said his spots and rash is going down now so fingers crossed all goes well for him now. He's been on rux nearly 3 MTHS now .

Tracey

[waddles22]

Husband now been on Ruxolitinib now for just 2 years made such a difference to his life. PV and Mpn but he is a different positive person now no itching no reaction to water sweating gone. He had such a bad time of it all. The only negative thing is skin cancer he has had 3 so far one really bad on the crown of his head. Awaiting to see dermotolagist yet again. Problem is he couldn't give up Ruxolitinib and go back to where he was