HU and numbness : Hi , Random question but has... - MPN Voice

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HU and numbness

jodary profile image
23 Replies

Hi , Random question but has anyone taking hydroxy experienced any numbness? Ended up in a and e due to some facial numbness . Have read (I know !) that this can be a rare side effect? x

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jodary profile image
jodary
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23 Replies
Nickthedevil profile image
Nickthedevil

Yes, in my toes and fingers

jodary profile image
jodary in reply to Nickthedevil

Have you been on it for long ? Is it something that will go away ? X

Nickthedevil profile image
Nickthedevil in reply to jodary

Hi, I have been on HU for 6 years. I don’t think it will go away x

jodary profile image
jodary in reply to Nickthedevil

How does it affect you. Not sure I can stand numb face for that long. Was hoping it was temporary. x

Nickthedevil profile image
Nickthedevil in reply to jodary

It doesn’t affect me too much. I think I am just used to it now x

jodary profile image
jodary in reply to Nickthedevil

I just feel it more on my face. Its a weird sensation x

Heather270240 profile image
Heather270240

Hi Jodary. I take HU and recently have been having bouts of numbness down my left side and also my face. I mentioned it to my haematologist who said it was not connected to HU. My GP said when it happens again I must phone 111 but feel reluctant to do that. He said he would refer me to a neurologist but I am still inclined to think it's the HU. like you I will be interested to see if anyone else has these symptoms.

jodary profile image
jodary in reply to Heather270240

That is so interesting ! Face side and a bit in top of leg and I did go to a and e. Have had ct and mri the mri was horrible! All fine. And I looked up sude effects which mentions numbness. If it continues I won't be able to carry on with HU. The face especially is not very nice and I can't function normally so stop in. And I would bet my Haemo will say the same. Ive only been on a low dose for 6 weeks. What about you ?

Heather270240 profile image
Heather270240 in reply to jodary

I have also had CT and MRI and all clear. I was convinced it was the HU so last year although a risk I stopped it for 2 weeks and within a few days all numbness had gone but returned when I started it again. Haematologist said she would change it to Anagrelide but the side effects are equal if not worse so I'm sticking with HU for the present. She will not support Interferon.

jodary profile image
jodary in reply to Heather270240

Can I ask where you got the numbness and how often ? x

Heather270240 profile image
Heather270240 in reply to jodary

It started in my feet 6 months after starting HU it then spread down my left leg and into my back and now into my face. When it travelled down the whole of my left side I thought originally it was a stroke and went to A&E but after all the tests I came home none the wiser. It wasn't until I stopped taking the HU for a short period I realised that was the culprit. My feet are always numb but other areas get numb every few days especially when I am tired or stressed.

Bluetop profile image
Bluetop

I get numbness in my fingers

jodary profile image
jodary in reply to Bluetop

That is mentioned as a side effect. Have u just started on it ?

Bluetop profile image
Bluetop in reply to jodary

No, I've been on it 3 years now. The numbness has started in the last 6 months.

ChelseaF profile image
ChelseaF

I take HU but my numbness and tingling (face, lips, tongue, toes, hands, and sometimes a whole arm) started before I began treatment. Sometimes it’s hard to tell what comes from treatment and what comes from the disease itself.

jodary profile image
jodary in reply to ChelseaF

This is true it just seems coincidental. Ive had ET for nearly 10 years yet this has just started. x

flirt_2015 profile image
flirt_2015

I have the same sensations it is weird feeling, feeling a bit down and anxious, I think it is the disease I have ET Jak2+. On hydroxy for 12 years

Not2bad profile image
Not2bad

Hi I also get numbness on my face, my GP diagnosed it as neuralgia.

I'm not on HU anymore now on Pegasys but still get the numb face.

I get it in my feet as well.

In my case I think the numbness is more likely to be a result of the disease (MF) or my high blood pressure or maybe just 'normal' neuralgia.

That's the thing with MPNs - nothing is clear! Is it the MPN, is it the medication or is it 'just' something else!

I was diagnosed with MF after going to my GP with tingling/numbness in my feet, the full blood work led to a referral to Hematology and here we are!

F.

Serge___ profile image
Serge___

I see on English language posts people writing about HU.

I suppose they refer to Hydroxycarbamide pills.

Mine are called Hydrea and each pill is printed BMS303.

Where does the HU abbreviation comes from ?

jodary profile image
jodary in reply to Serge___

Ha ha Im really not sure !

Jlah profile image
Jlah

Hi. Recently had 3 bouts of numbness in left cheek. Thought it was after affects of a stroke from last year and triggers anxiety. so glad you asked the question as seems it could be hydroxy or ET and not alone in this. Take care Jx

jodary profile image
jodary in reply to Jlah

It certainly does trigger anxiety. Ive only been on it for 7 weeks and its scared me. I was so determined to make a success of this treatment but was not expecting anything like this. Ended up with ct and mri scans not pleasant experience and 4 days of stress. It was only after I wondered about it. Not sure where it leaves me if it continues I doubt the Haem will accept it vould be the hydroxy. Very unpleasant x

jodary profile image
jodary in reply to Jlah

Mine was also left cheek. X

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