Hydroxycarbamide side effects

[Digger031145]

I’m wondering how many of you knew that neuropathy a listed side effect of Hydroxycarbamide .

Also bilateral field vision is a listed side effect.

If anyone here has experienced these side effects I’d be grateful for your replies

[lizzziep]

When I was on hydroxy I got pain in my feet/toe’s which was first diagnosed as neuropathy but eventually turned to ulcers on my toes. I’d been on it without any problems for 3 years previously to that. We all seem to react differently to the various drugs.

[Bridie123]

Yes, but it doesn't mean your haematologist will know this or except the fact, mine didn't! I still have it, even though I am now on peginterferon. It is a DVLA notifiable condition.

[Digger031145 in reply to Bridie123]

Did you change to another medication

[Bridie123 in reply to Digger031145]

Yes, peginterferon alfa-2a. It took me a Very long time to muster the courage to change because of the possible side effects, but I am glad I changed. Still have the neuropathy though.

[Digger031145 in reply to Bridie123]

Did your Haemo agree side effect of HU?

[Bridie123 in reply to Digger031145]

Not initially, but I insisted that I didn't have it before so she looked into it and discovered that sometimes this can happen with hydroxy and referred me to a neurologist.

[Digger031145 in reply to Bridie123]

Did your neurologist agree?

61 week wait here for urgent neurology appointments

[Bridie123 in reply to Digger031145]

Yes, she did agree that hydroxy can do this but didn't commit that it would be the only reason I have neuropathy. It hasn't gone now I am on peginterferon, but has improved slightly. I really liked her, she listened to you and explained things and took your concerns seriously. I only saw her twice and now she has moved away! The new guy, gave me a ' curtesy ' phone call and there are no plans to see me!!

[Ovingite]

Hi. I'm very interested in the link between hydroxycarbamide and neuropathy. What is the source of your information please?

[Digger031145 in reply to Ovingite]

I got some of it from NHS England and some from other sources by searching

are you having these problems?

[Ovingite]

I have some symptoms that could relate to peripheral neurological causes, but I'm reluctant to ascribe all my aches and pains to hydroxycarbamide. I might discuss my symptoms with my haemo on my next review and see what they have to say.

[Digger031145 in reply to Ovingite]

I have never ascribed my aches and pains to Hydroxycarbamide but these I’ve got now cannot & should not be ignored

[Hbm1]

It’s early days for me l I’ve been on hydroxy for 3 months now and platelets have come down nicely. However, I think I had peripheral neuropathy before I was even diagnosed with ET and certainly before the treatment started. I’ve been asking my GP about this and blood tests yesterday don’t signify anything remarkable (in his words) so he’s referring me to a Neurologist. I suffer from tingling feet that sometimes feel like they’re burning and sometimes feel swollen but they’re not. My eyes also suffer, not vision but more like dry eyes. When my feet are bad my eyes are also bad! My GP can’t believe there’s a connection but I’m convinced there is. I shall get a private neuropathy appointment if the NHS a keep me waiting. I shall report accordingly and I too am interested if anyone else has these symptoms.

[Digger031145 in reply to Hbm1]

I was referred to neurology in June but last week was told 61 week wait

[Loubprv Volunteer in reply to Hbm1]

Hi I too have erythromelalgia ( burning painful toes feel swollen but not, and dry eyes) apparently a knock on from an Mpn not a drug. The erythro usually responds to aspirin - didn’t work for me so I take 500mgs paracetamol and half an ibuprofen 100mgs. Which seems to knock it quickly on the head for 8-24 hours. Dry eyes I use Hydramed night and Hydrabac. Louise

[Hbm1 in reply to Loubprv]

Thanks for this Loubprv. We seem to have similar symptoms with feet and eyes. However, looking at erythromelalgia the symptoms seem to include 'red and painful skin' . My skin doesn't change colour at all so maybe it's something else. I definitely had the symptoms before taking hydroxy so it is either related to the E.T. or something completely separate? Do you get this redness of feet?

[Spanelmad in reply to Hbm1]

Seeing a neurologist this week for neuropathy brought in by peg.Appointment took 3 months

[Carol0925 in reply to Spanelmad]

Hi 👋 how long after starting Peg did you experience neuropathy?

[Spanelmad in reply to Carol0925]

About 8 doses in, I was only on 45 mg as well.

[Tipsy2023 in reply to Hbm1]

Morning the burning feet sensation and visual issues have gone alongside my raised platelets from the moment they started to rise these symptoms are mentioned with ET but most consultants seem not to agree ? I also have Sjogrens which though increase dry eye did not effect vision until platelets were increased . I was told the temporary loss of vision or pixilated vision was possibly migraines but it stopped on clopidogrel .L

[Hbm1 in reply to Tipsy2023]

Interesting that you mention Sjogren’s. When I’ve been looking up my ‘odd’ symptoms Sjogrens keeps coming up. I’m wondering if this too could be associated with E.T.? Just a thought.

[Hbm1]

I’ve been told that there isn’t a neurologist in Shropshire ! I’m making enquiries for a private consultation.

[Loubprv Volunteer]

hi

Understand your concerns. However I was on HU for 15 years with no side effects whatsoever, as are many folk.

Finally had to change as was causing actinic keratoses on my face. Now cleared up, and all is well.

I think that we have to remember that all drugs affect everyone differently and not be afraid to try them. Pegasus didn’t suit me but thousands don’t have a problem . I m now on Rux and keeping fingers crossed that this is the one! Louise

[Digger031145 in reply to Loubprv]

I’ve been on it 10 years and up until the numbness started I had tingling in my legs feet arms and hands. All these now numb.

I also had chills too which I’ve now found out are a known side effect too .

[Loubprv Volunteer in reply to Digger031145]

hi if a side effect of HU have you considered changing? Louise

[Digger031145 in reply to Loubprv]

Hi Louise

I didn’t realise the chills & tingling I’d had for a few years was a side effect. It’s only dawned on me since the numbness started and tingles stopped.

These symptoms now coincide with the increases I’ve had over the last years

Rose

[Loubprv Volunteer]

Hi Rose, what a pain for you. Have a chat with your haematologist about trying another drug. He/she will probably put you on interferon. Small injection once a week into tum ( really really fine short needle) which you will be shown how to use. A doddle honestly.

Vast majority of folk get on with it really well.

Worth a thought? Louise

[Digger031145 in reply to Loubprv]

Thanks very much Louise

Does it have horrible side effects?

Rose

[Loubprv Volunteer]

gosh Rose. I’m not a doctor.

You know, EVERY drug in the world comes with side effects. It doesn’t mean that you will experience any one of them.

The way I do it is NOT to look at the side effects unless I seem to be troubled by something - then I look at the side effects.

We could needlessly worry ourselves to death about a plethora of side effects. It’s simply not worth it.

However, these may not be attributed to the drug, but to the disease itself.

Louise x

[Tipsy2023 in reply to Loubprv]

Morning I am with you on the side effects view

For most reading the long lists of possibles that have to be listed is just miserable , and not preventative so I look as new effects occur. L