dizzy, ET , aspirin and Peg interferon

[Sprat19]

Every so often I get bouts of dizziness. Often associated with nasal congestion so. I think it could be ear related. I am on Aspirin and pegasys. I have MPL ET. Could it be ET related ?? Any ideas.

[hunter5582]

Dizziness can occur for a number of different reasons. inner ear infections and ET are both on the list of potential causes. There are other causes as well. Suggest you follow up on any ongoing sinus/ear issues with an otolaryngologist and with the ET potential for dizziness with a MPN Specialist. It may take a team approach to sort the dizziness out.

[Sprat19 in reply to hunter5582]

Thanks, seeing my MPN specialist in the n

New Year. So will discuss then but I guess I should see my GP too. I am in the UK

[Ellipops]

hi. I was on Peg for several months with minimal side effects and then started to have episodes of dizziness and disorientation. They unfortunately got progressively worse until I felt I was unable to walk in a straight line. I also had nasal congestion and blocked ears. On discussion with my haematologist at Oncopole in Toulouse ( major Cancer hospital and research centre in France) Peg was immediately discontinued and I reluctantly started on hydroxycarbomide. The dizziness stopped. Despite my reluctance to start hydroxy they have worked well and are well tolerated. I hope that it isn’t the Pegasys causing your issues as it undoubtedly works in so many ways, but please be mindful that it could be the medication causing the dizziness. Best wishes.

[Sprat19 in reply to Ellipops]

Not being able to walk in a straight line and disoriented sounds scary. Currently it’s wafts of spinniness and need to sit down. I first noticed it at work whereI have to wear a mask and blamed that but it’s not just when mask wearing.. will take it seriously.

[George1976]

Are your platelets at or near normal when you have dizziness?

ET CALR here. At the start with platelets at 1.7m felt good. A few months after starting anagrelude got dizzy/flu like feeling in head with platelets near 1m mostly. After 2 years of that went on Pegasys 45 mcg weekly. Flu like feeling mostly went away except just a bit on day/day-after injection, platelets below 500k mostly. After 4 years of that stopped Pegasys due to suspected involvement in developing neuropathy related weakness in feet. As platelets went back up into high 500k range, topping out at 850k, dizziness came back worse than ever. Started Hydrea and dizziness is still bad with platelets in mid 500k range but much better than it was at 850k. I’m reluctant to take more and more Hydrea to get them to normal due to its toxicity.