Hydroxycarbamide query

[heathermc]

Think I've got a bit of brain for.. old age ..had a nose bleed.. just came from nowhere. Had a sinus feeling then nose started bleeding . Not for long and I managed to stop it quickly.. I've just increased my dose slightly of HU from 500 mg a day to 1000mg on two days and 500 mg for 5 days. Am I right in thinking this is usual.. I feel ok and went to work ( retirement didn't last long) I didn't panic . Just with reading so much recently felt a bit confused..

Have also noticed quite a prolonged feeling of low mood lasts a day then goes..

Keep thinking I'm going mad.. I drink tons of water eat well and yet I'm losing a bit of weight not a massive amount.. just a few pounds.

Thanks

[JSKly]

I was more inclined to nose bleeds when my hgb was higher than it should be. You are on a relatively low dose of Hydroxy. What you describe sounds fairly normal to PV to me. I wonder if weight loss is somewhat due to worry. But we are all different and this disorder is surprising. I’ve had it for 20 years now.

[hunter5582]

You did not mention whether you are taking aspirin, but if so would think it is a more likely candidate for a nose bleed than HU. If your platelet level get really high, then you can see some change in platelet function (Acquired von Willebrand Disease). The nosebleed may also be completely unrelated to the MPN and meds. I have had an MPN (ET that progressed to PV) for over 30 years and the one thing I have learned is that we are all different and the way the MPN plays out can be unique to each of us. All the best to you.

[wotan10]

I use suffer unexplained migraines, nose bleeds unprovoked, and aura disturbences.

Since diagnosed with ET started with hdu

No return of symptoms

I take my meds at 2pm, on 2x500mgs 7 days a week.

I feel fine.

When I feel tired I go with flow.

Good luck.

[Cja1956]

I also get spontaneous nosebleeds but they are few and far between and stop quickly. I even sometimes forget to tell my hemotalogist about them. I have ET and PV, so I figure it comes with the territory.