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…

@janemc Yep. Could be anomic aphasia. A condition I've dealt with since being hit by a bicyclist in 2014. I have a (undiagnosed) traumatic brain injury from that and my anomic aphasia resulted from it, about two years later. The symptom is a temporary inability to recall memories, especially of words, names, phrases. It's very frustrating and embarrassing to deal with, but if I pause to think for a moment, it'll come to me within seconds or minutes. Rarely does it take longer. It helps if whomever I'm speaking to is patient and can make suggestions, though this can sometimes just stall my ability to arrive at the right word. It can happen whether I'm speaking, writing or thinking.

Hello everyone,

I have had Polycythemia Vera for about 3 years, and until recently I had never heard the term "brain fog." After reading other patients' experiences, I realized that it describes exactly what I have been struggling with.

I am an audiologist and have worked in the field for 12 years. Lately, I find myself forgetting basic words, having difficulty finding the right terms during conversations, and feeling that my reasoning and processing speed are slower, especially in professional situations. It is frustrating because these are tasks that used to be completely natural for me.

I previously used hydroxyurea but was resistant to it. I am currently being treated with ruxolitinib, which has helped some of my symptoms, but I have not noticed any significant improvement in the brain fog.

For those who experience brain fog, what strategies have helped you? Have any treatments, lifestyle changes, cognitive exercises, or other approaches made a noticeable difference?

I am only 33 years old, and sometimes it is hard to believe everything I have gone through over the last three years since my diagnosis. It has been a challenging journey, and I would really appreciate hearing from others who have had similar experiences.

Thank you.

@iurefranca It could be anomic aphasia, which is a temporary lack of recall. The memories are still there, but you can't access them right away. I have a TBI from being hit by a bicyclist in June 2014 and, from this, I have anomic aphasia on a daily basis. It comes and goes, affecting words at random, but I remember the words. The inability to recall and say them is temporary, lasting only seconds or minutes, usually. That a certain word may become inaccessible to me for a few minutes, but then I recall it later, proves that the memory still exists. There is no memory loss.

@nypara66
Hello friends ! Was diagnosed with PV 20 years ago ! For years only phlebotomies were my treatment! I have to say that I felt best once the blood was removed.
I was on HU FOR COUPLE OF YEARS , did not help with symptoms. So when JAKAFI BECAME AVAILABLE AND POPULAR, I was given JAKAFI , I liked how it took away my symptoms but
AFTER ABOUT TWO YEARS ! All my blood numbers took a dive and I became very anemic! First decreased AMOUNT, then stopped because my numbers kept on dropping!!
I could not get up the stairs
Very scary 😧 I believe that old drug like HU , were not invented for blood cancers . They have some serious side effects . Friends , I ALSO HAVE TIMES WHEN I CAN NOT COME UP WITH A WORD WHICH I USED MILLIONS OF TIMES , I often have to describe what I wanted to say using different words,
THE OTHER SIGNIFICANT ISSUE I HAVE IS withMY EYES ! I see double letters and looking out every thing is blurry or fussy 😩
I believe it’s the illness and the medication we are taking! I am now on OJJAARA FOR THE LAst EIGHT MONTHS AND STILL SUFFERING THe SAME SYMPTOMS! I AM ANEMIC AND ALL MY BLOOD NUMBERS ARE BELOW MINIMUM ON THE CHART ! I want to ENCOURAGE YOU TO READ WHAT OUR MAYO FRIENDS ARE POSTING AND RESEARCH YOUR OWN BLOOD 🩸 ILLNESS
THANK YOU FOR YOUR HONEST POSTS AND SHARING! I wish ALL OF YOU BEST OF LUCK 🤞
SINCERELY HANYA