a cold hanging on!

[Loubprv]

Happy New Year to one and all!

Quick question. I' ve had PV for 16 years and have now been taking ruxolitinib for 5 months, which I know lowers immunity.

I have had a sore throat which seems to come and go, for a month, and a cold for over 15 days. Nothing terrible but jolly irritating nevertheless, because I've avoided going to lots of nice things ( missing out on going out for lunch today) - I don't believe in being a bug spreader.

Has anyone anyone else experienced this? Obviously I've asked I've asked my haemo about this, but just wondered if a really lowered immunity has affected anyone else.

Thanks so much.

Louise

[ainslie]

I asked my expert doc at Mount Sinai if I was immune suppressed on 20mg BID Rux since years and he said no, I don’t get colds often and never had COVID. He did say it varies from patient to patient so it could be Rux in your case but maybe not , I’m not sure that helps much though.

[Loubprv Volunteer in reply to ainslie]

Thank you for your reply anyway Ainslie !

[Hocus58]

Hi I’ve been on RUX 2x 10mg daily for a year now. I did recently experience a cold picked up on a flight coming back from holiday early November which took 2-3 weeks to completely clear which is longer than normal for me. But at the moment there is a lot of flu and other cold bugs about which is taking a lot longer to clear in people whose immunity is not compromised. I hope you feel better soon.

[Loubprv Volunteer]

Thanks so much!

[hunter5582]

I am experiencing mild lymphopenia and borderline neutropenia on Besremi. My numbers are not so depressed that my body cannot respond to an infections. The targets my MPN care team set are LYMPH>0.50 and NEUT>1.00. I have not experienced any untick in infections. When I had COVID, I responded as well as can be expected. I was concerned about the lowered leukocytes so i consulted with my Integrative Medicine doctor. She recommended that I take Reishi and Astragalus supplements to boost my immune system. I cannot prove that this is doing any good but given that I do not seem to be more prone to infection, I plan to keep taking the supplements. If you are interested in using complementary health interventions, please consult with a medical provider who is familiar with these interventions and how they interact with Jakafi and other medications.

Wishing you all the best.

[Loubprv Volunteer in reply to hunter5582]

Thanks Hunter will do

[Exeter21]

Just think it’s bad luck with various infections recently. A cold usually did not bother me. However all taking longer to clear. Told it’s not my immune system or medication . I am on Peg Interferon.

I contracted a cold September. travelling. Sore throat went to ears & ended in Barcelona hospital with extreme vertigo. Now January & still ongoing Vertigo. Awaiting ENT . However never ever had infection this long in my life. Since Covid there appears to be so many varied strains of different infections we now reap the problems . 😱 unfortunately.

[Loubprv Volunteer in reply to Exeter21]

Wise words - I agree! Think I ll just have to be patient. Thanks and so sorry about the vertigo - it's horrid I hear.

[Exeter21]

yes vertigo horrendous if it happens extremely frightening as never had it before. Comes on suddenly but tablets helping thanks & shaking the head 😂👌

[Chicagopv]

yes. I get bronchitis more than I used to now that I’m on Rux. Had it three times in 2024.

[Loubprv Volunteer in reply to Chicagopv]

Crikey, poor you. We'll have to become hermits ..

[Leveret20]

I have had similar - a cough started on 30 November and meant that I had to miss all my musical activities and socialising in the run up to Christmas, because I do not like to spread germs either. It was rampant for a good three weeks, then subsided a little. It is still there now but less bothersome. I have not had a cold take so long before. It could be a particularly nasty virus, but I suspect that the MPN and interferon are part of it.

[Loubprv Volunteer in reply to Leveret20]

Thanks so much. This will make you laugh. We' ve cancelled 2 supper parties and new years eve due to folk falling like flies here in Cumbria but the best " excuse" was a friend who dropped his teeth, stood on them, and couldn't eat or speak poor chap! Hey ho, time of year but I ve never known so many poorly folk

[Chicagopv]

but still we go on—-

[EPguy]

I'm on Rux 10 2x/day. There has been a persistent if mild cold with sore throat going around (in S. California) esp a couple months ago. I got the sore throat, and runny nose etc lasted a while, likely from my parents at the rest home. But others I know got it too. Otherwise I've not had any other sore throat so far.

[BloodyMPNS]

no advice but hope you feel better soon. Mel x