Peripheral Neuropathy

[Phantasia]

I have recently developed peripheral neuropathy from hydroxyurea and have now discontinued the medication. Has anyone else had this happen and how long did PN symptoms last?

[MPort]

Hi I have PN in my feet. Had initial tests to confirm it which involved neurologist testing feet by sticking in fine needles! He offered referral to get tested with electrical device which I declined. There was nothing that could be done they said. So if anyone has any info on this I would be very interested.I am on interferon for 15 years plus daily aspirin.

[Kekoa in reply to MPort]

If you search for peripheral neuropathy in advanced prostate cancer community, member nalacrats has a post for that subject.

[MPort in reply to Kekoa]

Thanks for that suggestion. I went to the correct site but couldn't find nalacrats. Any change you could provide a link? Or copy and paste it? I would appreciate it very much. Thank you.

[Kekoa in reply to MPort]

healthunlocked.com/advanced...

[Kekoa in reply to MPort]

healthunlocked.com/advanced...

[Kekoa in reply to MPort]

There are two posts.

[MPort in reply to Kekoa]

Hi I have read and saved both posts. Thank you so much for putting these links in. Life Extension Europe don't appear to stock the Benfotimame so I will call the UK no later today. The possibility that this and the R-lipoic Acid could help gives me hope. I am very grateful to you for passing on this information. Will report back on how I get on.

[Phantasia in reply to MPort]

I have also ordered Benfotiamine today. Fingers crossed.

[MPort in reply to Phantasia]

I can't get Benfotiamine in Europe. It's been withdrawn. If I order from US it will be held at customs. I have ordered the R lipoic.

[Phantasia in reply to MPort]

How long have you been feeling this way? I was only on hydroxy 7 months when I started experiencing PN. Might be a good idea to have your Vitamin B levels checked. Neither my GP or haemo have been very helpful. They both seem to think it will pass now that I am off the medication and to give it time. GP prescribed Temazepam to help me sleep. Compared to others I seem to have a mild case but it's still a nuisance. In your case I would get a second opinion. What does your haemotologist say?

[Bluetop]

I am on hydroxy and have an extremely sore toe -the podiatrist says its a chilblane, but I was wondering about the hydroxy. What were your symptoms? My toe feels as though it is being scalded. I have had it a couple of weeks now.

[Phantasia in reply to Bluetop]

Basically it was like a switch had been flicked. The burning and tingling sensations started in my lower legs and feet literally overnight. My haematologist told me to stop taking the medication. That was five weeks ago but I am still suffering. Now my tongue feels like it's been scalded. Not pleasant sensations. I sometimes get a little numbness at the tips of my fingers. I see my haemo again next month. She's hopeful things will have settled by then. I hope she's right. I can only sleep if I take a pill. Chilblains are usually red and itchy. I have had them in the past. Check with your specialist about your toe. I hope it isn't PN as it can be very uncomfortable. Best of luck.

[Cakeface in reply to Phantasia]

I too get burning/tingling in my feet and legs, mainly at night. I also get what feels like an intense heat coming through my back. What I was interested in is that you've now got the sensation in your mouth.

I've had this issue for over two years where my tongue feels burnt as you say but I also have the burning/tingling on the roof of my mouth and I'm convinced it's caused by the HU.

I will bring it up again with my haemotologist as it sounds more than a coincidence

[Phantasia in reply to Cakeface]

Sounds like the same issue to me. My haematologist told me PN is an uncommon side effect with HU but it does happen. How have you managed two years with these symptoms? For me it's only been a matter of weeks and I am struggling. Another sleepless night and my anxiety is starting to kick in.

[Cakeface in reply to Phantasia]

It does interfere with my asleep 😣 but a cold water bottle and a coolmax pillow helps a little with the external PN. It's worth a try.My mouth is more troublesome 😕

[Phantasia in reply to Cakeface]

Look up burning mouth syndrome. It sounds similar to what we are both experiencing. I am sure it's down to Hydroxyurea.

[Cakeface in reply to Phantasia]

It is BMS. I had it confirmed by hospital oral dept but he only ruled out some things that weren't causing it, like thrush, diabetes and B12 deficiency. I need to stop putting up with it as it affects my eating as well as the constant burning and tingling.

I'm going to tell Haemotology next month that I want to try an alternative to HU.

But other options also have side effects 😳

It's not easy is it

[Phantasia in reply to Cakeface]

I can only say that from my experience it's the meds. The only thing that has changed in my life in the last 7 months is starting Hydroxy. The fact my haemo told me to discontinue taking it seems to confirm that. I was diagnosed with ET 9 years ago and started HU based on the fact I turned 60. Haemo thinks I may be treatment resistant anyway as platelets haven't come down much. So side effects without a benefit. For the time being I am only on 100mg daily aspirin. As well as speaking with your haemo check with your dentist. There may be something he/she can suggest. I hope you can find some relief.

[Cakeface in reply to Phantasia]

It was my dentist who referred me to the hospital oral dept 😁 I've tried everything suggested to no avail. It's definitely time for me to change meds, as other possible causes for my various symptoms have all been ruled out.

I've got too many issues now and fingers crossed, things will improve off HU.I hope you soon benefit from being off it😊

[Bluetop in reply to Phantasia]

Yes, will speak to haem. It's the scalding feeling which is unlike a chilblane. Thanks

[Bluetop in reply to Phantasia]

I hope it soon settles for you

[Phantasia in reply to Bluetop]

Thank you.

[Minu68 in reply to Bluetop]

When I had an extremely sore toe, it looked red as well, it turned out to be a blood clot. This was before I was diagnosed as ET JAK2, though it is thought I have had ET at least a decade before diagnosis. Had a variety of diagnosis and interventions before being referred to vascular consultant. Two years later got ET diagnosis, started on Hydroxy, and that helped my toe return almost to normal colour. I would definitely check it with your specialist

[Phantasia]

Well it's three months since stopping hydroxyurea and I still have the burning, tingling sensations in my legs and tongue. Now I am experiencing tingling backs of thighs, upper arms and a hot sensation on the back of my neck. My haematologist has no clue and was surprised I was still having issues. She fully expected things would have settled down. Diabetes has been ruled out so now I will have my B12 and folate levels checked. My haemo said hydroxyurea doesn't effect B12 or folate but good idea to check levels anyway. I won't see her again until August. GP says could be 3 or 4 months before I flush the hydroxy out of my body. Starting to wonder whether this could be a permanent issue. It's really beginning to get me down.

[Cakeface in reply to Phantasia]

Hi, I was wondering how you were getting on after our past discussion. Sorry to hear that you've still got issues with PN and BMS.Thought I'd share with you that I recently discussed my symptoms with my haemotologist, and in particular my mouth issues and after more than two years with the problem, he's advised that it is a symptom of low iron and that he didn't think that HU was causing it. Sounds like I'm stuck with it 😣 However, it did actually improve when I was taking ferritin, so he could be right 😒

I'm waiting to start on pegysys and I've been off HU for a couple of weeks. My PN isn't quite as pronounced but there's definitely no change with my mouth

[Phantasia in reply to Cakeface]

Low iron. That's interesting. I asked my Haematologist how my blood counts were and besides the platelets she said they were fine. I am still waiting on results of my vitamin panel. My tongue still tingles but it isn't as bad as it was.

My GP has prescribed 7.5mg nightly of Mirtazapine to help me sleep. It works most nights. Getting some sleep is helping me cope better overall.

Thank you for checking in with me. I really appreciate it.

[BeckyDing in reply to Phantasia]

Hi

I have been having similar symptoms which accelerated since getting covid - I was on interferon and having a break due to my health but hydrox prior to this - however the burning mouth was during interferon - I am still getting tingly feeling and muscle cramping in legs but aspirin has helped with foot cramps, also you can be b12 deficient without it coming up on a blood test , I was when I was on hydroxy and took ages for my consultant to listen to me and take some further bloods that proved I had pernicious anemia - ET can alter the shape/side of your blood cells so the standard test doesn’t work - also I was on a ppi as got bad reflux which changes how you can absorb b12 - I think I am deficient again now but they won’t provide b12shots again so I’m taking a mouth spray which goes into your blood stream - plus mouth spray for vitamin d and just started liquid turmeric/curcumin which helps with chronic inflammation which unfortunately we tend to get with our condition - I’m waiting to see a muscular neurologist to check everything ok but even private it’s over a month wait at the mo - 6 months on NHS! It took 3 months for my gp to listen that didn’t think it was just long covid and I had symptoms prior but I could function with it before - keep pushing with your specialist -re burning mouth I changed toothpaste, laid off caffeine, fizzy drinks, spices for a while and took b12 and it did eventually settle - I get the odd flare up now but only lasts a couple of days normally - take care x

[Phantasia in reply to BeckyDing]

I am doing a lot better than I was. I still get flares but haven't relied on the Mirtazapine nearly as much. Funny thing was my mouth was feeling better then it started up again about 6 weeks ago. Has settled again. Just a slight tingling tongue. I am not on any meds apart from low dose aspirin. Stopped taking hydroxy 7 months ago. Thought it would be out of my system by now. Haven't had Covid and am worried it could exacerbate things. I am having B12 shots but have only had one so far and haven't noticed any difference. My active B12 is fine. I will likely have to try Interferon eventually. I hope it won't cause the PN to flare up again. I hadn't thought about changing toothpaste. Could be worth a try. Mouth issue could also be the Mirtazapine. As I have reduced dosage the mouth issues seem to ease.

[BeckyDing]

so glad you are feeling better - I remember having burning mouth and it really can make you feel miserable and fed up - I got a sensitive toothpaste which really helped

[michael123]

yes I was told its permanent damage from hu and have to live with it now.