Chorea and PV

[PFR1937]

Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications). Around a couple of years ago my mother started to experience involuntary body movements, frequent bighting of her lip / cheek and difficulty swallowing together with worsened balance generally. Her haematologist referred her to Neurology to resolve the chorea as her blood tests appeared relatively normal (at least for someone with PV).

The neurology consultant assessed her, tested for Huntingdons (negative) and prescribed Clonazepam. Mum couldn't tolerate a high dosage but was able to take one tablet per day, half in the morning, half in the evening. The chorea gradually resolved over the next year, the swallowing taking longer, but she was most pleased that her visual disorders (flashing lights, dizziness, etc) which she has suffered from for decades all disappeared pretty quickly. Although I don't think you are supposed to continue with Clonazepam for long and the chorea is now resolved, her consultant considers that as she still derives some benefit she can stay on a low dosage for now.

The chorea was very worrying and even seemed to affect her personality which also became more abrupt like the involuntary body movements. I am very grateful to her neurologist Dr Weatherall, for helping to resolve this.

[Mazcd Partner MPNVoice]

hello PFR1937, so pleased to read that your mother's symptoms have much improved, best wishes, Maz

[PFR1937 in reply to Mazcd]

Thanks Mazcd

[hunter5582]

Thank you for sharing your Mother's experience. Managing multiple disorders can be a very real challenge. Glad to hear that the Clonazepam is working for her.

FYI - a few facts about Clonazepam. It is a benzodiazepine (AKA a minor tranquillizer or sedative) . It used to treat a variety of conditions, including anxiety, Tourrettes, sleep disorders, and burning mouth syndrome. There is a caution for the use in elderly patients. There are also Black Box Warnings, including risk of dependance. It can be used long-term, but it must be tapered to discontinue due to risk of withdrawal symptoms.

Like all of the medications we take, the risk-benefit profile has to be considered. It sounds like the clonazepam has worked out for your Mother. Here is a bit of information you may find helpful.

online.epocrates.com/drugs/...

drugs.com/monograph/clonaze...

Thanks again for sharing the good news.

[PFR1937 in reply to hunter5582]

Thanks Hunter - always good to hear from you and thanks for the warnings about Benzodiazepenes. I hope things are working out for you too.