Words are coming slower; cognitive decline seen in PV?

None of us is getting any younger, and that could be contributing.

But what you're experiencing is so scary. My heart goes out to you.

I was diagnosed with PV in February. Put on HU 500 mg twice daily. Just hit my targets for hematocrit and platelets, so now reducing HU to once daily on MWF and twice daily the remaining days and see if the counts hold.

HU does cause fatigue and “brain fog” in some people- me included. That could be contributing to some of your cognitive issues. Reducing my dosage may help with those side effects, according to my oncology nurse practitioner, as long as my counts hold.

Have to add that I am also hypothyroid, and suddenly my TSH levels spiked after remaining stable on my current levothyroxine dosage for years. That can also contribute to the above symptoms. My primary care and oncologist just shrugged on the reason for the thyroid change - if related to the PV or HU - and increased that dosage.

Bring up your concerns with your oncologist to see what’s right for you. Also - and I am not a physician, but ask them about the possibility of a mini stroke.

Best wishes for finding a cause and a fix.

@janemc I’m just 59 with PV Diagnosed 3 1/2 years ago. Brain fog is a real thing. Also the neuropathy? Sometimes in my face and tongue feels like I came from the dentist which can make my speech slow. PV or the Hydroxyurea? Who knows but it just sucks and we all find ways to deal. I try to stay busy and keep my sense of humor. This disease is so rare and even the doctors don’t know much. Low iron can cause almost all the issues we have. New studies show that it may not be the PV but our iron deficiency that causes the majority of our issues…