HU and numbness

[jodary]

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

[Nickthedevil]

Yes, in my toes and fingers

[jodary in reply to Nickthedevil]

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

[Nickthedevil in reply to jodary]

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

[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 in reply to jodary]

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

[jodary in reply to Nickthedevil]

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

[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 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 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 in reply to Heather270240]

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

[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]

I get numbness in my fingers

[jodary in reply to Bluetop]

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

[Bluetop in reply to jodary]

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

[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 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]

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]

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___]

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 in reply to Serge___]

Ha ha Im really not sure !

[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 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 in reply to Jlah]

Mine was also left cheek. X