periferal neuropathy advice

[Lynne-G]

Hi

ET diagnosed Feb 2015

I take 1500 mgms of Hydroxycarbamide

5 days 1000 mgms on Sat and 500 mgms

on Sunday & Asprin

I am being investigated for a periferal neuropathy diagnosis.

My Haematologist says not related to

Hydro.

your thoughts please.

ynne

[hunter5582]

Peripheral neuropathy is a known adverse effect from hydroxycarbamide. Here are a couple of citations.

online.epocrates.com/drugs/...

link.springer.com/article/1...

And a previous conversation on this topic

healthunlocked.com/mpnvoice...

Suggest getting a second opinion from a MPN Specialist who will be more familiar with hydroxycarbamide than a regular hematologist.

Hope you get i all sorted ASAP.

[Lynne-G in reply to hunter5582]

Thank you Rem 31

Originally it was my GP who thoughts it was HU related and he asked me to mention it to my ET consultant who said no it wasn't related and she has referred me back to my GP for a me Gfir referral to a Neuro consultant.

Lynne

[hunter5582 in reply to Lynne-G]

Follow up with a neurologist is definitely indicated. Follow-up with a MPN Specialist as well. The good news is that if HU is the cause of the neuropathy, there are other options to treat ET. Note that is would likely take some time after discontinuing the HU for the neuropathy to resolve if that is what the issue is.

Wishing you all the best. Please do let us know what you learn as all can benefit from your experience.

[Rem31]

I’ve been taking HU since 2013 and the dose was raised in 2021 due to increasing platelets. A few months later I started getting strange symptoms in my hands and I was advised by a haematologist to ask my GP for referral to neurologist as peripheral neuropathy is a known possible adverse effect of HU.

Turns out my symptoms are due to carpal tunnel syndrome but both GP and haematologist were aware HU may cause peripheral neuropathy. It’s disappointing your haematologist doesn’t know this.

[Cokopops]

Hi. My haematologist was also unsure that the pain I had on my foot was due to hydroxycarbamide. Cut a long story short, finally prescribed amitriptyline 25mg and after a week the pain has finally gone. I’m a bit sleepy with that med, but better than having that terrible sharp pain. Good luck

[havashan]

I experienced numbness and tingling in my arms and legs several years ago after I was diagnosed with an MPN (JAK2 but unspecified) and was referred to a neurologist. No neurological problem was found. I later saw a MPN specialist who told me that this is not an uncommon symptom in MPNs. At the time I was treated only with low dose aspirin daily. When I later started INF therapy (45 MCG every other week) and my platelet count decreased, these symptoms went away. I have never been treated with hydroxy.

[jon1972]

I agree with havashan and was going to say the same thing. The MPN itself can cause neurological symptoms. I know this from experience in following how well my disease was controlled in relation to neuropathy symptoms over the past 4 years. Before dx and treatment it was the worst. Much better now that I'm controlled with IFN. I guess the easiest solution is to cut out the HU and switch to another drug or phlebotomy and aspirin and see what happens. The upside is it doesn't require multiple conflicting opinions.

[Belltech1275]

Be careful my oncologist had to reduce my Hydrea doses to 500/1000 alternating. At 1000 mg per day had deep ulcers on my ankle bones. Was like someone burning me with a hot iron. Had to sleep with my legs out of the bed on a stool, just a bed sheet was causing terrible pain, like Zona.

[Belltech1275]

I was diagnosed in 2005 after 3 days in the emergency, had extreme side pain and dizziness and sleepy. Am Jak2 positive and Calreticulin positive. Good days, bad days. Hydrea gave me tinnitus and have trouble sleeping. Taking medical cannabis. Also cannot stand the summer heat breaking out into extreme sweat just after 15 min outside. Always have leg and bone pain. Not an easy disease to manage as you get older, just turned 69. Some days you have energy others you feel like a zombie. Photography is my go-to hobby and sometimes just to tired.viewbug.com/member/MyNikonLens

[Phantasia]

Hi there Lynne-G,

I was on Hydroxy for seven months. Initially at 3500 mg weekly and then 4500 mg weekly. One night towards the end of last February I woke up with burning feet, shins and knees. It literally happened overnight. After a discussion with my GP and haematologist it was diagnosed as PN from the medication. I was taken off it immediately. Five months later I am still experiencing a mild burning, tingling sensation in my shins, knees and now backs of my upper thighs and my tongue and lips tingle.

Hydroxyurea can indeed cause PN. It's not one of the more common side effects but it does happen.

You may need to discuss an alternative therapy with your haematologist.

I wish you all the best. PN can be a very uncomfortable problem.