Infections with Ruxolitinib

[Orangeboykitty]

Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting to feel more like myself now. I took Rux once before, back in 2017. Same story.....quick spleen reduction followed by shingles. I think my hematologist and I will have to have a serious consultation. Just figured everyone should know there's an upside and a downside to this drug.

[ainslie]

I am sorry to hear of your immunity issues. I have been on quite high dose Rux for 5/6 years for PV and have had no immunity issues except shingles once, I am about to get the Shingrix vaccine which is allegedly 90%+ effective. In fact I seem to get less infections than most, I haven’t had a cold or flu or Covid for about 4 years, my partner had a cold last week, I didn’t get it, I have been careful re Covid though. I also do everything I can to keep myself healthy in other ways , eg healthy diet, correct supplements, exercise etc, all of which help the immune system. I saw an expert Haem at Mount Sinai very recently and I asked that question, am I immune compromised on Rux, he thought not for me.

[Aldebaran25]

thank you for letting us know. I am on Pegasys atm and know that the day I have to change drug, for whatever reason, it will probably be ruxolitnib. Hope you get better soon and avoid any more infections.

[EPguy]

I've been on it ~7 months, so far no new infections. But my other troubles more than make up for that.

What dose have you been on?

[Orangeboykitty in reply to EPguy]

I've been on 10mg twice a day.

[EPguy in reply to Orangeboykitty]

Same dose as mine. My hubby won't let us do any socializing anymore, my little body is too trashed to take any risks. Could be one reason I've been ok infection wise.

[Orangeboykitty in reply to EPguy]

Just weighing my options on socializing. My husband and I are very active in our Messianic congregation here in Israel (so it's not just "socializing") and that's an extremely important part of our lives. Guess I'll need to have a chat with my hematologist when I see him next month.

[EPguy in reply to Orangeboykitty]

Group gatherings can be safer (nothing of the sort is fully safe) with N95 mask. I still wear it when visiting my parents, or any other public activity. But of course if eating is part of the visits, that's best outside of confined spaces.

If I still had just my well behaved PV I'd probably feel freer to take the risks.

[MPNBlog]

Thanks for this update. After the results of the MAJIC trial in the UK this year which was very positive about Rux for people with PV, I considered Rux and became aware of some of the side effects (apparently significant weight gain can also be a side effect). So it's helpful for people to post about their experiences here, as it helps us all on this journey. Thanks and best wishes.