Jakafi and Tinnitus: I have developed Tinnitus in... - MPN Voice

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Jakafi and Tinnitus

Psteuer profile image
6 Replies

I have developed Tinnitus in both ears in the years I have been taking Jakafi. My red cell count is well controlled, so I don't think it is related to PV. Are there any other members on this list treated with Jakafi who have developed Tinnitus since beginning treatment? Thanks!

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Psteuer profile image
Psteuer
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6 Replies
socrates_8 profile image
socrates_8

Hi there Psteuer... :-)

I believe that I had Tinnitus well before I started the Jakafi... I believe that it may be associated w/ higher Platelet counts, but that is just my theory for the moment...

Hope this helps a tad... (?)

Steve

Gabrielle79 profile image
Gabrielle79

I ( PV) developed tinnitus when my values were still in normal range.

As my rbc and platelets started to rise the tinnitus increased. tinnitus is a symptom of MPN's .( attributed to not only the quantity of red blood cells/ platelets but also their stickiness ....)

Several medications that are prescribed in MPN can cause tinnitus as well or make it worse ( aspirin, hydrea, interferon) this varies in every patient. jakavi does not have it now on the side effects list but look up the link I added .

patientsville.com/jakafi/ti...

Bullace profile image
Bullace

Hi there.

I've noticed tinnitus in my left ear particularly, though it doesn't really bother me too much. I've been on Ruxolitinib (Jakavi) for about 7 years for myelofibrosis. Don't think I had it before.

All good wishes

Bullace

Belltech1275 profile image
Belltech1275

I started to get tinnitus when I was diagnosed in 2006 with ET. Hydrea seems to have made it worse. It is driving me whacko. It is very loud even meditation music is buried by the tinnitus. Not enough to have this disease but to tack on tinnitus is truly a daily burden.

Daisy62 profile image
Daisy62

I was diagnosed with Meneire’s Syndrome many years before PV. The symptoms were tinnitus, dizziness on my left side when laying down (like the bed spins without drinking) and hearing loss. The symptoms stopped for many years but have noticed recently they’ve begun again. I’ve been on Jakafi for about 3 years and blood levels are normal. Not sure if there is any connection PV or Jakafi though.

ash2k1999 profile image
ash2k1999

I have been taking Jakafi for 13 weeks, I started getting thumping & whooshing in my ears after 10weeks on it. I don't know if my dosage should be lowed. Hoping for an answer from Hemotologist soon.

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