new onset neuropathy

[Zechariah123]

hi

Hi since a liver transplant 3.5 months ago I have been getting burning feet esp at night. It has gradually worsened and now I get it during the day with pain and swelling and my hands have kicked off now. It is so bad at times I just can’t walk with the discomfort and pain. I’ve heard it’s due to the tacrolimus. I did not have any symptoms or health issues pre transplant.

Lisa

[Readlots]

Hi Zechariah, I don’t know anything about transplants but it sounds like something you could discuss with your transplant nurse. I hope you get it sorted

[theoldboiler]

I have peripheral neuropathy from liver disease. In between numb times my feet can very painful, especially at night. Compression socks help quite a lot. Wendy

[Mollydoll12]

sadly, in the end I was refused a transplant so cannot help. All the best

[123AF]

Hi Zecheriah,

My husband gets this. You should definitely seek out advice from your doctor who may refer you to a neurologist.

Here is what has helped my husband;

He eats limited sugar and processed foods.

Compression socks can help.

We were told movement is good for it. Definitely check with your doctor on that.

At the time he was taking a protein powder that (we didn’t realize) had a ton of B6 in it. He would also take melatonin and a lot of manufacturers put it in there as well. So we cut both of those out because his were high.

Your levels may be tested if you see a neurologist, B vitamins can have an impact. They are usually too low.

[Catfriend]

Hi, I had a liver transplant in 2018 and have been on tacrolimus ever since. I get occasional sharp pains in my toes and never realized it could be a result of the meds. But they don't cause me extreme discomfort. You should probably follow up with your surgeon or perhaps a neurologist. Wish I could be of more help. Good luck!

[Braveheart65]

Hi,

I had liver transplant 12/20 been on Adoport (Tacrolimus) on decreasing doses since then, currently on 2mg am and 2.5mg pm.

Sadly, like you I suffer from similar symptoms. The way I’d describe mine is that of immersing cold feet into hot water. Various consultants have attributed this to neuropathy. Never been prescribed any meds for it. It’s not every night but most and not only at nights either.

I don’t think there’s much can be done and to be honest, I’m not sure I’d self medicate with supplements, mention it to your medical team.

All the best

Alicia

[dxenart]

My dad suffers from this - please see this site -> verywellhealth.com/burning-...

[Zechariah123 in reply to dxenart]

Hey thanks this is helpful

[BritishLiverTrust1 Partner British Liver Trust]

This is a question that your own health care team is best placed to answer and we suggest talking this through with your transplant nurse or doctor in the first instance.

Best wishes

British Liver Trust

[Zechariah123 in reply to BritishLiverTrust1]

Thanks for your advice, wasn’t seeking medical advise but trying to find out whether it was correlated with tac by asking if other recipients had experienced it.

Lisa

[lonmallin50]

No not had mine yet still waiting sorry

[meme7]

Congratulations on getting a liver transplant. It has been almost 6 years since transplant for me. I am still taking 2 g. tacrolimus daily. I don’t have painful feet now. I did suffer before transplant. Transplant has saved my life. I had liver cancer before transplant. Sounds like neuropathy to me. Ask your liver team doctors or nurse. I would never take any other meds without discussing it with them . I sorry for your discomfort.

I always stay close to my Hepatlogist who I now see once a year. But communicate with her nurse team always about health issues before taking any meds.

I wish you peace and comfort always. You were very blessed with a new liver.