Peripheral neuropathy and Hydroxy

[Lynne-G]

Hi. Anyone know if taking Hydroxy can lead to peripheral neuropathy? I am ET Jak neg Carl positive.

Thanks 😊

[hunter5582]

Yes. HU can cause peripheral neuropathy. This is well documented in the literature.

epocrates.com/online/drugs/...

drugs.com/sfx/hydroxyurea-s...

The risk of PN is higher when certain drugs are prescribed concurrently.

Suggest you review your concern with a MPN Specialist.

[kiwitraveller]

I have peripheral neuropathy which has worsened lately - am on Hydroxy and have Pre-myelofibrosis. Have had some form of neuropathy ever since diagnosed but am going to talk to my team about it. It certainly doesn’t stop me doing anything just annoying at night.

[MWxxxx in reply to kiwitraveller]

Can I ask what symptoms you get with this and how it was diagnosed? I have recently started getting pins and needles occasionally in my left foot and even more occasionally in my left hand. I have also recently had a mark appear on my left ankle which was thought to be the start of an ulcer but it has started to fade. I have been getting awful pains in my ankles at night for a long time and have had xrays etc which have shown nothing. I was recently reading about peripheral neuopathy and wondered if some of my symptoms may be related to this, but no medical professional has ever suggested it. I am also on Hydroxy - I have PV. Thank you.

[Lynne-G in reply to MWxxxx]

Hi.I am on Hydroxy 1500 M-F 1000-S 500-S

Started getting numbness in right toes and side of foot.

Pad of my foot felt strange.

Tingling in leg up to right buttock.

GP thinks PN and I am waiting to see a neurologist, I was referred July '22

Told there would be a significant delay.

Having waited patiently I finally went back to my GP whereupon it was admitted no referral was sent. Now trying to get a private referral. It beggar's belief!

Haematologist doesn't think its Hydroxy related? I am in a loop.

Good luck 👍

[MWxxxx in reply to Lynne-G]

Thank you. That sounds a bit of a nightmare but unfortunately not surprising. I hope you get it sorted. I also am getting a sort of weird tingling sensation up my leg and into my left hip but it doesn't feel joint related. I think I will have to mention it at my next appointment. Thank you for your help.

[kiwitraveller in reply to MWxxxx]

It started with numbness in balls of feet a few years ago and Morton’s was diagnosed but steroids and cryosurgery made absolutely no difference. I now believe it is associated with high platelets.

Once I started Hydroxy started getting tingling in my leg and toe numbness- annoying but not enough to worry a lot. However has worsened. The bone pain in my leg is a dull ache at night. Was tested for every possible cause - nothing - so believe this is associated with myelofibrosis. It comes and goes and does not impact on my life at moment but concerning if it spreads.

I seem to be getting a lot of minor annoying symptoms but nothing I would get upset about - Haem says that generally with platelets stable at 500-800 for a few years now and being in really good health - I should just stay on Hyrdroxy. I am not sure and may get another opinion as Haem is not a MPN specialist. I am 72.

I do find daily yoga seems to help manage my symptoms.

[Bridie123]

Hi there, I have it. At first the haemotoligist said hydroxycarbamide didn't do that, but had the good grace to go through the contraindications list and found it, so I was referred to a neurologist who has confirmed it. Unfortunately it is a condition that legally requires you to inform the DVLA. So now I am on a medical driving licence.

my neuropathy also seems to be affecting my eyes , an optician seems to think. I have had enough! So in the beginning of October I am changing over to peginterferon . I am totally fearful of doing this, but if I can tolerate it, it will be great to get off that poison hydroxycarbamide.

[Mudmaker]

I was on hydroxyurea for sixteen years. When I was in a pool swimming usually on holiday I felt as if my lower legs had weights on them or I was wearing boots. I stopped HU a few years ago as it wasn’t controlling my platelets. I was started on Ruxolitinib but could not tolerate high doses. I am now on 10mgs Ruxolitinib twice a day and on HU 500 msg every second day. My PN symptoms became very bad constant numbness tingling and pain in my legs also numbness and tingling in my arms. I have now stopped HU.

[Hollyhedge]

Hi Lynne, I have PV and was on Hydroxicarbomide for the first 9 months after diagnosis. I had terrible peripheral neuropathy in my hands and then started to feel it in my feet. Went to GP who wrote a letter to my haematologist and I was taken off the drug. Lasted on venesections for a few years but over last six months have had to progress to Peg-interferon injections weekly. Started at 45mcg to get used to the drug then 90mcg and now on 135mcg. Had a lot of agitation and very unsettled emotionally when I went up to 90mcg but asked to up my sertraline from 50mg to 100mgs which rectified those side effects. Now I am good and platelets and white blood cells gone right down Hct is very slowly going down, but it's going in the right direction. I pushed my GP to write the letter as the PN was driving me insane, so take charge and make happen what you want to happen. Best wishes for a good result. Catrin