I have been diagnosed with PV about 18 months agonand have been having regular phlebotomies to bring down my Haematocrit . Now at about.49. I have ringing in my ears ( tinnitus). Is this common and any suggestions as to how to stop the noise would be most welcome.
Thank you
I have PV Jak2+ and I have tinnitus too has it for at least 18 months, was diagnose with PV March 2019, I don't know if its coincidence or related to meds, I am on Hydroxycarbamide. There is no cure, my noise is more in my head than my ears, very loud buzzing or ringing sometimes.
I was diagnosed with PV last November & after several venesections I became iron deficient & then noticed a slight ringing in my ears which I didn’t have before. Apparently it’s one of the symptoms of iron deficiency but it seems to have improved now my haematocrit is down to where it should be & I haven’t had a venesection for 3 months.
You are correct that tinnitus is associated with PV. There is some thinking that the hyperviscosity of the blood is the case but it is not really understood why. Sometimes the tinnitus will diminish when the underlying conditions treated.
Another cause of tinnitus is hearing loss / damage to the ear. Since many of us with PV are in the age > 60 group this is another potential case of the problem.
It is tricky sorting out what the underlying cause of these symptoms are when they can result from the PV or be unrelated. In my case. getting my HCT < 45% makes no difference in the tinnitus, I do have mild hearing loss and a family history of tinnitus related to hearing loss. While the erythrocytosis may make the tinnitus worse, I would likely have it in the absence of the PV.
The tinnitus comes and goes with no apparent reason. I have learned to just ignore it. Perhaps someday a cure for tinnitus will be found. I expect it would have to be multiple cures since there are multiple causes.
All the best.
I have noticed tinnitus ever since I was first diagnosed with ET in 2018, I became PV in 2021. I currently take HU since July 21. Nothing seems to make any difference in the tinnitus, sometimes it is louder than other times. I had to buy a Zvox voice clarifying speaker to use with my tv so that I can understand the dialogue. My blood counts do not affect the tinnitus good or bad. If you find anything that gets rid of the tinnitus please let us all know. Best to you.
I developed tinnitus after I was diagnosed with PV in November 2021 but neither of the consultants I spoke to (including an MPN specialist) linked the two together when I asked if they were associated. So in some ways its heartening to see here that there may be a link and my experience is akin to yours Paul 1214 - a noise in my head. I did stop taking aspirin for a couple of weeks on advice from the MPN specialist as apparently it can cause tinnitus and the noise reduced considerably and became bearable. As it did not go completely I resumed the aspirin but if it had worked there was an alternative to aspirin. As there are multiple causes of tinnitus I do wonder if it is a stress response in my case as my MPN buddy suggested it would calm down as I grew more comfortable with my pv diagnosis and this has been the case -I am learning to live with it and in the process have discovered that some of my friends and work colleagues have had tinnitus for a long time and it does not hugely affect their quality of life and they are able to largely ignore it.
I've had mild-medium tinnitus for many years. It did change after my Dx, about the same level but more strange. On HU my blood counts were fine but the tinnitus didn't change much. Since starting INF (Besremi) it has been better. Could be if I stayed on HU longer it might have improved too.
I'm also taking supplements NAC (N-acetylcysteine) and Curcumin. Could be these help as the timing is coincidental.
Thank you for the reply
I have tried HU but my platelet level went down dramatically and I had to stop
I have an appointment with the haemotologist next week and I think that they will recommend that I start taking pills to help bring down my RBC count
Thank you again
My best guess is the INF has helped in my case with the tinnitus.
Do you know which pills Dr plans for your RBC? I know only of experimental Rusfertide that is targeted specifically to RBC/HCT. Another option would be good to know about.
Jakafi is approved for PV, and that could be one your Dr has in mind. You can also ask about INF or why Dr does not recommend it.
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