Hydroxycarbamide Polycythemia Vera Balance Issues

[Paraic2021]

Hi Friends I have been on Hydroxycarbamide for over 3 year's my balance is so bad Haemotoligy Consultant says go back to GP who I told before. anyone have or had same issues. I have had a brain scan but nothing found. I am also on Atorvastatins and Blood Pressure Tablets and Clopidogrel. I have finally got GP Appointment for 11th Feb Face of Face. Any positive input for now I would be very thankful

[Swede]

Yes, I really have balance problems but...as usual the GP says 'aha' and that's it.

[Paraic2021 in reply to Swede]

Thx for reply

[DJK12]

Has anyone suggested it might be being caused by an ear problem? If not it might be worth asking your GP for a referral to ENT. There is something called BPPV which causes vertigo and dizziness but is easily treated by an experienced audiologist or physiotherapist by doing the Epley Manoeuvre. The only problem might be waiting lists for ENT - I had to go privately.

[Paraic2021 in reply to DJK12]

Hi Had Ears checked no issues

[hunter5582]

You need a proper evaluation to find the source of the balance issue. This is a potential side effect from hydroxycarbamide but can also happen due to the PV. It could be unrelated issue caused by the inner ear or something else. It could also be a side effect from another medication or combination of medications. Sometimes timing is the only clue.

Wishing you success sorting this out,

[Paraic2021 in reply to hunter5582]

Hi Hunter seeing GP next week to see if something can be done Haemo Consultant says nothing to fo with PV or Hydroxy as my Blood Levels are ok

[hunter5582 in reply to Paraic2021]

You can still have issues even if blood levels are OK, though perhaps less likely. HU can directly cause balance issues regardless of your blood levels due to neurological side effects. That is not to say that the PV or meds are the issue. In fact, it is important to rule out other causes first. Inner ear issues are often the culprit with balance. Much better to check out the things that are relatively easy to find and deal with before looking for the more subtle causes. The GP may not be able to do the same type of assessment of the inner ear as an otolaryngologist. The GP may need to refer you to the specialist for a full exam.

Hope you get it sorted soon.

[Paraic2021 in reply to hunter5582]

Thx Hunter

[Cat1001954]

hi I’m on same tablets as yours I suffer from vertigo Iv had it 4 times ask about that as it affects my balance when I’m having an episode x

[william-Indo]

If your BP med is Bisoprolol or such kind, that is the source of unbalance.

[Paraic2021 in reply to william-Indo]

ThxWill

[Threestreams]

Thankyou for asking this question . I on same pills and have been aware that my balance is not what it used to be . However I had put it down to aging . I am 68 , I have recently got a cat and as you know they can be quite a lot around your feet . I was getting to stage of finding a new home for the cat as I have found myself tripping . I will mention this to my haematologist. Thanks 🙏

[Paraic2021 in reply to Threestreams]

Thx for reply

[LeoTravels]

Hi Paraic2021,

So many things can cause balance issues, I take Hydrea and statins and million other things, but I also have another underlying very rare blood disorder that affects my cerebellum- it sounds like your scan does not show anything, I assume you had an MRI?

I have a Neurologist who has been treating me for a few years now, and the very best advice she gave me was to get to the gym with an Excercise Physiologist - targeted balance exercises are the ONLY thing that gives me relief from my balance issues. Even just after a couple of sessions you will notice the difference. It is also VERY important to have strong leg muscles if you have balances issues. It really helps.

All the best to you.

Leo Travels, Sydney

[Paraic2021 in reply to LeoTravels]

Hi Leo MRI last year was OK but seeing GP next week Thank you

[Amethist]

have you ever had your vitamin levels checked, especially B12?

Here are some neuro symptoms attributable to B12 deficiency:

Source: nhs.uk/conditions/vitamin-b...

Vitamin B12 deficiency can also cause symptoms that affect your brain and nervous system (neurological symptoms), including:

numbness

muscle weakness

psychological problems, which can range from mild depression or anxiety, to confusion and dementia

problems with balance and coordination

pins and needles

incontinence

Please don’t expect to get any real help from your GP other than a blood test.

Ask for B12, folate, iron panel and Vit D and thyroid.

Get a print out of your test results. Even if your B12 is in range, this does not exclude a deficiency as the test is well documented to be pretty useless. If your symptoms alone suggest a possible deficiency this should result in treatment.

There are many other B12 symptoms that you may wish to look at and if applicable to you, discuss with your GP to encourage them to test you asap.

The NICE guidelines for treating B12 deficiency are very clear but GPs usually ignore them. Quick treatment is essential as unless treated timely, neurological issues from B12 deficiency can become permanent.

Don’t take any b12 supplements before having a test as this will make it look like you are ok when you are not.

There is a great B12 group on Health unlocked if you need to know more.

Make an appt tomorrow for a blood test.

Good luck 🤞

[Paraic2021 in reply to Amethist]

Many Thx Amethist

[RoundTheWorld]

I don’t have actual balance issues ( has been tested) but for a few years pre PV diagnosis (and more mildly now) issues with feeling ‘dizzy’, with a few bouts of acute vertigo with nystagmus diagnosed as BPPV. (I had a fall a couple of years ago but that seems to have been a ‘trip and fall’ accident misjudging a kerb in the dark).

When and how it presents is inconsistent, so difficult to diagnose. Can feel more like dizziness, light-headedness, slight listing to one side or like the floor is a little spongy. Worse when v tired, stressed or dehydrated but not the whole story as can still occur to a lesser degree even when looking after myself.

Probably a combination of several causes. I take blood pressure meds and interferon too and some of those list dizziness as possible side effects.

I second what Leo Travels says - I was sent for vestibular rehabilitation (physical exercises to help recalibrate your brain to cope with or ignore the sensations of disequilibrium and strengthen key muscles). It helped, and also to have had an assessment ruling out some of the other possible causes such as labyrinthitis. I was also given helpful advice re things that can help, - eg easier for your brain if your body has more contact points eg in a chair but don’t become too sedentary as brain adapts more efficiently if it has regular input to learn from.

Best of luck - it’s a tricky one as can be so multi-disciplinary.

[Amethist in reply to RoundTheWorld]

Please see reply I have sent to Paraic2021 above. Could apply to you too.

I had a lot of the symptoms you mention which is why I went to see GP in first place. On correcting my own B12 deficiency, all the symptoms disappeared, within a month in my case. ( eye problems, balance, dizzy, memory, psychiatric, severe headaches, didn’t feel safe driving …)

[RoundTheWorld in reply to Amethist]

Thanks for the reminder Amethist - I had noticed your reply elsewhere and then got sidetracked. Will look into that too.

[Tipsy2023]

Hi very similar scenarios and medication . I think the condition itself is a huge factor . I kept being diagnosed with labyrinthitis prior to ET diagnosis.

When I started Hydroxycarbamide within 2 days I had extreme 360 room spinning and felt my brain was bouncing around in my skull only way I can explain it .

Prochlorperazine helped and Professor Harrison at Guys suggested I take Hydroxycarbamide at night which I do and it has helped .

Recently I have been diagnosed with Atrial Fibrillation and the irregular heartbeat also contributes to the slight swooning dizzying effects .

I am working on getting some of my specialists to speak and cooperate which I really feel will help .

These symptoms seem to come and go which is why I think diagnosis is so hard but also why I think it relates to the condition which though my platelets are controlled the condition remains . L

[Paraic2021 in reply to Tipsy2023]

Thx for info Tipsy

[Exeter21]

I am on Interferon . I had balance & vertigo 5 months now. Had CT scan fine bloods fine. I am sure mine is a virus causing inner ear problems with balance as I had a throat infection before these problems occurred. Currently having Acupuncture & doing the head balance excercises as my ENT referral is a wasted space as 9 months wait anywhere in UK 😱 Julia .

[Paraic2021 in reply to Exeter21]

Thx Exeter

[DJK12 in reply to Exeter21]

NHS Lothian quotes 80 week wait for non urgent ENT referral - very depressing. Marked contrast to excellent haematology treatment. I shook the piggy bank and went privately. You are right though to do balance exercises though - we should all do them even if no balance issues.

[sbs_patient]

I was diagnosed with PV in 2015 and was on HU for more than five yeras until I switched to RUX in 2022. However, my balance has been bad since an inner ear infection in 2005. It seems to be stable now, but I have to be aware of it and be careful.

[WIL2US]

Look up the Epley Manuver.

[Paraic2021 in reply to WIL2US]

Thx Wil

[BloodZero]

Im on 2000mg Hydroxyurea a day and never had balance problems.

[Pachena]

I’m 62 and have ETJAK2+. I was on Hydrea unsatisfactorily in 2023 and began Pegasys successfully in 2024.

I do get off balance and find myself reaching for she wall or railing off and on.

I mentioned it to my haematologist and she said it was part of the blood disorder. She did explain tho I’m sorry I can recall to share how she explained it.

Sometimes these things just go over my head.

I do balance exercises each day to give me more strength and I also brush my teeth standing on one leg for the bottom and change to the other for the top. Makes you concentrate and balance at the same time.

I have had BPPV in the past tho the maneuver stops that.

Best wishes.

[Paraic2021 in reply to Pachena]

Thx you Pachena