Peripheral neuropathy

[Benjamin12]

Hi, wanted to know if anyone on Anagralide suffers from numb feet? I have been on it for 5 years with E.T. and this numbness is getting worse as its affecting my balance. There was an article in the Mail newspaper yesterday about certain chemo drugs can cause this. I have moved back into an area so seeing a new Haematologist next week was going to have a chat about this then . But before then interested to hear other people's opinions.

[Bridie123]

Seven years of Hydroxcycarbamide did it to me, if you are in the UK, it is a DVLA notifiable condition!

[Benjamin12 in reply to Bridie123]

Thanks for your reply had foot ulcer with Hydroxcycarbamide most painful thing ever. I don't drive so that doesn't bother me just worried it might spread.

[YBSx]

Hi.

I take Hydroxycarbamide and suffer Peripheral neuropathic pain ( like electric shocks) I read somewhere that this can be caused by chemo medication but my haematologist says it isn’t related. In Jan I am having a nerve test on my back as I have tingling in my hand, legs and feet. I also get server muscle cramps.

Yvonne

[Benjamin12 in reply to YBSx]

Hi, I'm getting no pain whatsoever but pins and needles at night . It feels like I am walking on 2 cushions under my feet and my balance is now affected. Find it hard to believe its not the medication.

[April-May in reply to Benjamin12]

I’ve been on Hydroxycarbamide for 2 years and have had neuropathy in my feet ever since starting, which I was told is not connected (but I know it is!). My husband bought me a Revitive machine and I use it for half an hour each morning. I find this, plus walking in the garden barefoot, makes a big difference and my feet are just tingly rather than painful. Have to say I don’t walk as much as I used to though because of the neuropathy.

Hope you find a way that helps.

[Bridie123 in reply to Benjamin12]

They try to tell you it's not the treatments, I tell them it's in the contraindications list and I definitely didn't have it before! My haematologist is always saying she doesn't know anybody with the problems I get 🙄 well that doesn't change the fact that some of us do , does it.

Maybe something should be put in print about healthunlocked and sent to all haematologist saying, look at what people with these conditions are saying, and maybe they will have a better understanding of what we are going through, rather than thinking they have a one off person.

Back to the neuropathy, it does spread, so maybe if you can, go and see a neurologist and talk through your concerns.

Ps I have balance issues as well.

[Benjamin12 in reply to Bridie123]

Thanks for everybody's replies very interesting. Will speak to Consultant next week and see what they say.

[Meatloaf9]

I have had numb feet for about 15 years. PV Jak2+. I am also type 2 diabetic. I started on HU 28 months ago so I can't blame it on the HU. I Have had DM type 2 for about 7 years so can't blame all of it on that. When it first began I was told it was due to my starting to take atenolol for heart palpatations. I still take the atenolol. I suppose it is slowly progressing, probably the wrong thing to do but I just ignore it, not a recommendation just what I do. It will be interesting to see what your consultant recommends, please let us know.

[Anag]

I had peripheral neuropathy hands and feet and pain in every joint where I’ve ever had an accident. I am now only on one anagrelide, but was on 200mcg Besremi. I stopped the Besremi cold, turkey, and now after five weeks all the pains are gone. I still take one anagrelide daily. Just no Besremi. We’ll decide in a month according to how I feel and what my blood work shows which steps we’ll take.

[DJK12]

I have quite severe peripheral neuropathy - tingling, numbness and balance issues. I recognise your description of feeling as if walking on cushions particularly on hard surfaces for some reason. My GP and physio daughter have told me to use a stick when I'm out which I've found difficult initially, possibly for vanity reasons but it is reassuring. It's not so much walking that is the problem but rather standing still for any length of time.It has been coming on for years but greatly deteriorated this year. I was on HU for 15 years and anagrelide for 7. I've been on ruxolitinib now for 6 years though as far as I know it is not known to cause it. My haematologist has referred me to a neurologist but the waiting time where I live is 33 weeks - not great. In the interim my daughter has strongly encouraged me to do specific exercises to improve strength and balance and I am keen to do my best with these.

The GP assumes it's been caused by many years of the drugs ( I was also on Pegasys after Anagrelide and right at the beginning on high doses of Busulphan) but I haven't discussed with my haematologist as to which one might have caused it though it was while I was on Anagrelide it first started.

[PupsBestFriends]

I've had numb & tingling hands and feet since before starting Besremi, but now has changed to pain & soreness in same plus shoulders. Worse at night and morning. After 5-10 min standing or walking feet become numb, plus leg cramps. Just had neurology consult including cervical MRI, report says symptoms likely PV or medication related. Seems like many of us on different meds experience similar problems. Is it the disease or treatment, or both? JAK2+, 500mcg Besremi.

[Anag]

😉