Changing from Hydroxycarbamide to Jakavi

[the_black_pig]

I am in UK and have had Primary MF for 8 years and have been taking Hydroxy all that time. Main symptom for me is high fatigue.On pretty much Maximum dose and platelets still rising so my Consultant is looking to change my treatment to Jakavi.

Be grateful for any advice on any problems with this change and whether Jakavi will be an improvement, especially with the fatigue issues.

[ainslie]

I have PV not MF but I have not heard any problems switching from HU to Rux, watch out for some possible weight gain, many with MF report feeling much better and more energy, hopefully that will be you too 😀

[the_black_pig in reply to ainslie]

Many thanks. Yes hopefully it will help with fatigue.

[JeniMac in reply to ainslie]

Hi Ainslie Can I ask is weight gain a lot. And does it settle down. I have started Jakavi yesterday. Just can't afford to put anymore weight on Thanks

[ainslie in reply to JeniMac]

I just responded to todays post re Jakavi and explained about weight gain, have a look, if you can’t find it let me know

[Quitojohn in reply to JeniMac]

Hi JeniMac,

I now am on Jakavi since 8 months and gained 8 kilos! Same diet and same fitness pattern ( 3 x per week 45 minutes) and 100 km walking per month. No smoking, no drinking.

[Andrew8]

I had ET in 2016, was put on Hydroxy, after 6 months had extreme fatigue and developed AF, diagnosed with MF, put on Rux, much better, although had Shingles symptoms, left me with a long term rash but I treat that with organic Aloe Vera gel.Rux seems to reduce immune system so had all the jabs I can. Had Sepsis this year, but no major after effects, and Covid twice. So just have to be careful and be grateful.

Have had wonderful treatments at Aber ystwyth hospital.

[sbs_patient]

I was on hydroxyurea for PV for almost seven years, first 500 mg/day, then 1000 mg/day. This led to serious skin reactions; the dose was reduced but I then needed regular phlebotomy. A consultation with a MPN specialist a few months ago caused me to switch to Jakafi at 20 mg/day. This led to anemia so the dose was reduced to 10 mg/day. All seems to be going well now. Good luck!

[ainslie in reply to sbs_patient]

seems strange starting at the max dose then having to half it , the recommendation for PV is to start at 10BID

[sbs_patient in reply to ainslie]

Sorry for the confusion - I meant that I started out at 10 mg BID and am now at 10 mg once per day.

[ainslie in reply to sbs_patient]

it seems 10mg once a day, it is usually taken twice a day eg 9am and 9pm , who is the specialist MPN doc who suggested, maybe its a new way but never heard of it

[sbs_patient in reply to ainslie]

I'm sure you're right about taking Jakafi twice a day. Here in the US, it's far more cost-effective to order 10 mg pills and either take them once a day or split the pills and take 5 mg twice a day. So far, once a day is working for me, but if there are any issues, I'll try cutting the pills. It will be very hard to get any advice on this matter from a US practitioner.

[ainslie in reply to sbs_patient]

ah ok, I think it might say on the leaflet it should be twice a day

[sbs_patient in reply to ainslie]

Probably, but so far, so good, ...

[ainslie in reply to sbs_patient]

wonderful, good luck😀

[Thankfulone]

I started with ET and transitioned to MF. Meds were changed from hydra to Rux in 2016. It worked like a miracle for me. I regained a lot of energy and just felt so much better! I did have some weight gain but I felt that the trade off was worth it to me. Now I am feeling more fatigue again but still not as bad as it was. Hoping it works as well for you!

[Otterfield]

I found Ruxolitinib incredibly good. I was put on it from when I progressed to MF and my life was almost normal, apart from a couple of infections - Shingles and Campylobacter, both nasty. I was glad to gain weight as I had become badly underweight. My platelets started to drop really low but by then I was starting to prepare for my SCT so it didn't become a major problem.

[the_black_pig]

Many thanks for all the helpful replies. Saw my Consultant yesterday am now starting on the Ruxolitinib. Hopefully it will work well. 🤞

[JeniMac in reply to the_black_pig]

Hi how are you doing on Rux. I started yesterday

[the_black_pig in reply to JeniMac]

Hi Jenimac. I'm doing well. Platelets have come down to acceptable range. Red blood count is low though, but my consultant said that was normal initially and should come back up. Generally feeling better than when I was on Hydroxy, still fatigued easily but that may be due to low red blood count. No weight gain as yet. Hope the Rux works for you!

[JeniMac in reply to the_black_pig]

Great to here. I have terrible fatigue and just general feeling off. Hoping the Rux helps. Hope Wight gain doesn't as I can't afford to put any more weight on

[Andrew8]

There does not to be any magic solution, and all the meds seem to have side effects. I was diagnosed with ET in April 2016, but had severe fatigue in December 2016, had various med changes, changed to M F in April 2017, but also developed AF. Put on Jakavi, but developed shingles symptoms, still have rash itch down left side of trunk, which I control with Aloe Vera gel. After several cardioversions, AF seems stable , and platelet level is stable. Had Sepsis and Covid in March this year, but gradually improving. All these meds seem to effect different people in different ways, so patience is needed. Just have to be grateful we are here to tell the story.

[ainslie in reply to Andrew8]

it maybe worth getting the Shingrix vaccine or keep a box of Aciclivor handy, the trick with shingles is to start Aciclivor or similar immediately you notice shingles, that was it goes faster and less pain and less chance of residual pain