Low saturation with PV and Jakavi 20

[Quitojohn]

I have had PV since two years. Rux started december '23. Good results with HB and HCT.

HB is pretty low now 7.7 for a while. My weight has increased 10% wit the same diet.

My saturation is, in rest 92, with effort I can raise it to 93/94.

Long test last week revealed a very good lung condition (5,7 liters) and 120% function for a 83 years old guy, non smoker.

The worry is about the low saturation.

Any experience with this? I know Rux leads to shortness of breath but why, when all other blood test are ok?

[Quitojohn]

Sorry my age is 73!

[hunter5582]

This is really a question for your MPN care team to address. The HGB at 7.7 is a significant concern. It seems likely this is related to the RUX and the dyspnea you are experiencing, but i would not want to make any assumptions. If you have also seen a decrease in oxygen saturation then that is certainly a specific concern to address with your MPN care team ASAP.

[EPguy]

Your note on short of breath (SOB) got my attention.

On the Jakafi site:

"watch for the symptoms of anemia and discuss them with your Healthcare Professional. They include...

Shortness of breath (especially during exercise)

jakafi.com/myelofibrosis/si...

--

It seems tied to anemia etc rather than Rux directly. If anemia is the issue your low Hb is a consideration while one could feel ok when Hb is normal. Has your Dr discussed adjusting your dose?

If there is further info on SOB and Rux please share, it would be helpful for members.

I'm on Rux with normal blood counts and have been ok on SOB. I do have recent lung damage (mild COPD non smoker) from my other disease.

[Quitojohn in reply to EPguy]

Yes. Thanks. My Dr. knows this low HB count. April 5 will be a decision date whether I should lower the dose of 20 to 15.

[lizzziep]

I'm on Rux, and also anaemic, when my hg gets below 80 (8.0) I get breathless, it's a symptom of anaemia, If it does get below that figure I have to have a bood transfusion, fortunately I haven't had one for a while as it staying around 85 (8.5) still well below where it should be, but other numbers ok. I am 71 next month.

[ainslie in reply to lizzziep]

I assume you have MF though , the poster has PV so the management is very different, wishing you good health

[ainslie]

your Hgb is too low at 7.7 and so is your saturation, with PV (not MF) if the Hgb or Hct is too low the solution is to reduce the dose, not stop though,what is your Haem saying about those numbers.? , why is he keeping Hgb so low.What dose of Rux are you on.Normally with PV the issue is keeping down the Hgb and Hct not having it too low. You need to get those numbers up quickly and if your not getting what you need from your current Haem I would strongly advise seeing a MPN expert asap.

[Quitojohn in reply to ainslie]

Thanks. The last three months my HB has been around 8. Sometimes slightly above or below.

Last week it was 7.7 April 5th will be a cut off dat hopefully to lower my dose of Rux from 20 to 15

[ainslie in reply to Quitojohn]

You probably know but the UK range on my CBC for Hgb is 130 to 180 or 13 to 18 in your units, that’s for a non MPN person, most with PV are around 120 to 150, mine is 147 currently.

[sbs_patient]

I developed anemia when I started on Rux (10 mg twice daily) in August 2022, although my HGB bottomed out at 10.0. I was out of breath when walking up hills. Reducing the dose to 10 mg daily brought ny HGB up to 12.4 or thereabouts, and my blood work has been stable. Maybe you need to reduce your dose of Rux.

[Quitojohn in reply to sbs_patient]

I sure will consider that with my Dr.