Changing meds

[indy22]

Hi everyone, I haven't been on for a while I had a family tragedy and I have been feeling terrible for quite a while now . Anyway I am finally changing from hydroxycarbomide to ruxilitinib .

Is it safe just to stop taking hydroxy as my consultant said he would be ok with me changing over ! I thought I would have to wean myself off them first.

Thanks to anyone who replies in advance.

[Cja1956]

So I’m not sure it’s related,, but I switched to ruxo last June from hydroxyurea and in July I ended in the hospital with an enlarged spleen (which was new), my hemoglobin dropped to 8.3 from the upper nines, and my white blood cells shot up to 20, which had been normal up to that point. My hematologist mentioned it might be related. But once my body adjusted to the Ruxo, I felt much better than I had on the hydroxyurea previously.

[Pauline43]

i have just stopped hydroxycarbamide because of a (very painful) ulcer on my ankle that wouldn’t heal. I had been taking it forover 8 years but I didn’t stop gradually and had no side effects. I started ruxolitinib nearly four weeks ago and have my first haematology check on Monday.

Hope all goes well with your changeover

Pauline

[Mazcd Partner MPNVoice]

hi indy22, so sorry to hear that you have experienced a family tragedy. With regards to stopping the Hydroxycarbamide, you will need to ask your haematologist about this. Kind regards, Maz

[Ebot]

Hi

Sorry to hear that life has been so challenging for you. I hope that you are beginning to see your way through.

I’m on the Mithridate trial and moved from Hydroxy to Ruxolitonib. I finished taking Hydroxy one day and started Rux the next. I’m under the trials team at Guy’s so can say with some certainty it’s standard protocol and an OK thing! (I did ask!)

Wishing you all the best.

[hunter5582]

Sorry to to hear about your family tragedy. Thought and prayers for all of you.

When I discontinued hydroxyurea I chose to titrate down in steps even though there is no protocol to do so. My feeling is to gradual changes would be better tolerated. My MPN care team was fine with that. Suggest that you review your plan to transition with your MPN care team.

All the best.

[Arthandiwe]

Hi, I too have just experienced a family loss and a bunch of other major life changes in a very short space of time, and in the middle of that my doctor had me stop Hydrea abruptly and after a month put me on Jakafi. It is perfectly okay to stop Hydrea quickly, I suffered no adverse affects, in fact I was glad to be off it, I felt extremely fatigued, instead of just fatigued and got chemo brain, where I was forgetting everything, including very important things. My only serious side affects so far on Jakafi is that it makes me really anxious, in a way I have never experienced. So I now take an anti anxiety medication to counteract it, and that works fine. My red blood cells have dropped to lower than normal, so I again I feel fatigued, but so far am not as tired as I was on Hydrea. I am starting to notice joint pain, and wonder if that is connected, but I am well aware that I will always have something wrong with me now. I have early stage mylefibrosis from ET and have made peace with the fact I will never be the same as I used to be… it’s just finding the best way forward. I hope you find that and I pray for peace for you in this time. x

[JP1952]

Ditto to Ebot's post. I am also doing Mithridates trial and switched from hydra to Rux overnight. No bad effects and the benefits of Rux kicked in within 2 days.

[KLCTJC]

I have no input on your question. Just wanted to say my condolences and will put you in my prayers ❤️