Tinitous with PV and pegelated interferon?!

[Ellafea]

Has anyone else developed pulsatile tinitous while in their journey with PV w/ JAK2? I'm not sure if it's the PV or the interferon treatment... Any advice or experiences?? Also lack of sleep is something I'm suffering with!?

[Alexbits]

Search gives many results for tinnitus healthunlocked.com/search/p...

Hope this helps

[hunter5582]

Tinnitus is pretty common with PV. I have not heard of interferon causing this side effect. I have had it for quite some time. You may find it decreases when the blood is not as viscous. Time will tell.

Insomnia is also quite common with MPNs. I suspect that it is related to the overproduction of inflammatory cytokines, but no one has proven that yet. Insomnia is one the known side effects of interferon. It can be hard to sort out which is which. Best clue I know of is when did it start?

Hope you get it all sorted out.

[Bluetop]

Interesting you should mention that. I started with this 3 weeks ago -not yet discussed with a medic. I have been diagnosed with PV for 4 years and have been on hydroxy all that time.

[dgk70]

Hi Ellafea

I had exactly the same problem on interferon , The pulsate tinnitus ,kept me awake at night , after I had my 12 week blood test done i received a phone call from my haematologist to say I had become anemic, which was caused by the interferon ,I was told I had to go to haematology and i was given a blood transfusion .After the transfusion the following day the pulsate tinnitus had gone (Thank God ), I was taken off the interferon straight away , I am currently just taking aspirin , I am 50 years old and have ET which was diagnosed 3 years ago.

I hope this has helped you , and good luck ,

[Not2bad]

Hi I had a similar thing with pulsate tinnitus. It has reduced / gone away when my blood pressure reduced (was high). My balance was also slightly off and ended up with a referral to ENT. the ENT consultant said that it was probably linked to the MF. The blood is thicker than normal and can have problems going through the veins etc in the ear - balance and tinnitus!

It's the first time any medic mentioned that side effect of the MF to me

[MaggieSylvie]

Hi Ellafea,

I was diagnosed in June 2019 with MDS/MPN solely because I spoke to my GP about what I now understand to be pulsatile tinnitus. I'm on watch and wait and aspirin and I still have the noise in my head, though it is not so noisy as it was.

[Ellafea]

Thanks Maggie, good to know I'm not the only one!

[Ellafea]

Thank you for your replies!