Ruxolitnib - vertigo attack

[tracey13]

has anyone had a vertigo attack after a long haul flight when taking ruxolitnib?

We flew to mexico todays later on an excursion my husband had a terrible vertigo attack . He lost his sight and couldnt stop being sick.

This happened two weeks ago we back home now and his balance still isnt good.

Hes had an appointment with his hematologist hes requested an MRI for the back of the head. Ruxolitnib side effects can cause vertigo. Hes been on ruxolitnib for over 2.5 years and never had any problems.

Tracey

[Heidi-W]

HI Tracey

Really sorry to hear about your husband. You wouldn't usually expect loss of vision with a vertigo attack and I'm glad your haematologist has hopefully ordered an urgent MRI of the head in case of any vascular issues which need ruling out 1st as a priority. I'd def get in touch with your GP about the symptoms and get his BP and bloods etc checked. Good luck and hope he starts to feel better v soon.

Best wishes

Heidi

[tracey13 in reply to Heidi-W]

Hi Heidi,

His vision is back hes got no dizziness. His balance is off its getting better by the day.

Hes doing a weekly bp monitoring seems to bebe high on a morning but ok at night.

The doctor said the vertigo is a symptom. Hes had no headaches at all.

Hes always so cold since starting his ruxolitnib.

Tracey

[Heidi-W in reply to tracey13]

Ah glad he's feeling a bit better Tracey and keeping an eye on his BP. Really hope the scan comes through quick for him to check there's no issues with his cerebellum which is the balance part of the brain at the back of the head. Good luck

[tracey13 in reply to Heidi-W]

His consultant said hehe needs the back of his head checking.

Hes got an optician appointment tomorrow so hopefully that will be ok .

Its all a bit of a worry at the minute.

Tracey

[Heidi-W in reply to tracey13]

Yes I bet its been a worry for you. Glad tests so far ok and def good idea to get optician to have a review and check eye pressures etc.. Do keep in touch re how he gets on x

[tracey13 in reply to Heidi-W]

We thinking is it labyrinthitis?

When we were in mexico he dived in the pool and has still got water in his ear.

Suppose only time will tell

[tracey13 in reply to Heidi-W]

All went well with my husbands eye test there's no problems at all with his eyes. His balance is getting better.

[tracey13 in reply to Heidi-W]

The doctor done the eye to nose test with his finger this tests the cerebellum that was fine.

[hunter5582]

It can be hard to figure out whether these symptoms were due to the Ruxolitinib of the MPN itself or unrelated. Vertigo and visual disturbances are both MPN symptoms. The hematologist is absolutely correct to order a MRI of the brain ASAP. Follow-up with a neurologist is also the best course of action. While the MRI might show nothing, this is and event that needs thorough evaluation.

Please do let us know how he gets on and what you learn.

[ainslie]

my two cents is I would be looking at all the other potential causes of the vertigo attack, I have been on Rux 5 years and it may possibly be contributing to very mild feeling of balance being off sometimes I have not had attacks on it nor heard of others on Rux having such attacks. I have had vertigo attacks pre Rux usually when my counts were too high (PV) or for no particular reason just typical MPN business.

Between the swimming and long haul flight, possible dehydration? , inner ear issue and maybe mini TIA there are several possibilities on top of a not unusual MPN symptom.

It’s good your doc is being thorough. A expert Haem advised me on flights especially long haul, try to avoid alcohol before, during and day after flight , get up and walk about max every two hours and drink plenty water.