I have an appointment next week to talk about changing my meds, because I have night sweats and bone ache for over 5 years now and it not getting better, the doctors are saying my body is to used to Hydroxy.
I’ve had another bone marrow biopsy done, just waiting for the results and going to make plans for the future to have a transplant.
I’m not sure about going on Ruxolitinib, with all the side affect it has.
Hi Wendy I,I switched from HU to Ruxolitnib as part of a clinical trial but really happy to be taking Rux because it's stopped the pruritus.
The side effects from HU were abdominal discomfort and sporadic clusters of mouth ulcers.
The side effects of Rux are abdominal discomfort to a lesser extent, dry mouth, and weight gain.
I have continued to experience night sweats since the menapause (am 70 now) so can't blame either drug, however, they are getting less frequent. I have also become progressively more fatigued over the years and I think that has accelerated since taking Rux. I find it difficult to pinpoint the cause of some symptoms, is it the MPN, the medication, or getting older? I don't know.
That's my experience of both drugs, for me Rux is better because no itching.
Everyone can be different but most have little or no sides on Rux, I haven’t been on HU but tried Peg, failed due to sides. I have been on Rux for PV for 5 years and have no sides except a tendency to put on weight which I easily control by exercise and reducing / avoiding sugar and refined carbs. I hope that helps.
I felt incredibly well on Ruxolitinib. My agonising itching stopped and I had more energy, not less. It shrank my spleen and enabled me to gain weight.I am having my SCT this month.
Very Best Jennie for your S CT .this month. Will be thinking of you.😍❤️
Back in 2016, my doctor switched me from hydroxyurea to Ruxo because he felt I was transitioning from Et to PV. My energy levels and appetite improved onRuxo for a while but then in 2018 I started to not feel so well and I was very fatigued and dizzy and my legs felt like they had weights on them when I walked. I switched doctors to get a second opinion. I was told I was anemic. And that I didn’t change to PV, I changed to MF. I’ve been on and off other medications since that time but at the moment I’m back on hydroxyurea. My hemoglobin was 8.7 at the time. It was 11.5 at my last check-up and has been pretty stable for the last couple of years.
This is just my experience but everyone reacts to medications differently.
Good luck going forward.
Are you feeling ok?
If you might like a further option, you could ask you Dr about whether you might qualify for the phase 3 Momelotinib trial, a Jak inhibitor for anemic patients:
<<Momelotinib is an investigational JAK inhibitor that has shown unique efficacy in improving red blood cell counts in patients with myelofibrosis and disease-related anemia, according to Srdan Verstovsek, MD, PhD>>
onclive.com/view/momelotini...
Thanks for the information, EPguy. I have a unique case in that my platelets have been pretty high, while my red blood counts are low. My hemoglobin at my last visit was 11.5 and my doctor is happy with that. She has kept me stable for a couple of years now. If my numbers start to drop, then Momelotinib might be an option.
Hi Wendy , I have to take HU and Rux. Once I was on the Rux my life improved no end. bloods so much improved and I feel so much better. I recommend you give it a go.
Good luck
Mal
Hi Wendy After 15 years on HU, I have a further mutation from PVR to MF and just been switched to Ruxolitinib. I believe that due to the high dose of 2 x 20mg daily the side effects of fatigue and UTI's. Have been vastly exaggerated and after much consideration dropped my self down to 2x 10mg daily and starting a slow improvement. By all means do the changes but be very aware of the effects and be vocal if it's needed. Wishing you the best of luck and fingers crossed it works for you 😊
To hydroxy or not to hydroxy
Break from hydroxy
Hydroxy to Peg Interferon
Has anyone had to give up work due to having MPN ? 
