Me too, me too!  I have to be extra careful walking down stairs and even on the flat it's like I keep catching my foot.  Now that everything is hopefully out of my system I'm going to start B12 and see if that helps.  Good luck Bills!

Forgot to mention  Vitamin B 12.

This is a fairly common deficiency in the older population. It's worth getting your blood level checked.

It's one cause of PN that can be treated. Cheers.

It can be a painful nuisance! I reported to experiencing pain and numbness here during and after TX.  My pharmacist enthusiastically pointed me toward magnesium powder. Her words were

" you won't know yourself ".

She was so right. I no longer experience symptoms of PN. I think it was after two or three weeks that I realised symptoms had completely gone. I continued to take for a couple of months but no longer need to. 

Sleeping beautifully now!

Also thinking of you BillS.   

it's amazing how things like this come up and peoples start saying me too me too, We we seem to have a very wide range of issues that we have to get used to for a while.

Thanks for your comments Malcom, Guess i got at least 8 out 10 of these things. and over the last seven years I sought many specialist and most said what your saying it's most likely hep c related and it seems through all of the sharing I think they are right.  I was really disappointed as I cleared the virus that I didn't feel much better.

I was sure after all these battles with the dragon I deserved  to feel better. The good news  I drew my 12 week EOT blood last week and thought I would have my SVR this weekend, well maybe Monday / Tuesday.  I know seeing the Undetected  is going to be the best thing I seen in many years. So I should be doing flips soon. and When I see it I'll let ya's know.

BillS

I have it too Malcolm....Started about 3 years ago.  It's in both feet, and the best way to describe it is a constant tingling, not pain, not hot, not numbness, just an ever annoying tingling.  When it started, it was just at night, but after 3 years, it progressed to 24/7.  It was bothersome enough for me to see a neurologist who really couldn't find anything after all his initial tests seemed ok and said he can go further with biopsies of some nerves....I said no  ..He offered some pain meds, but I'm not in pain, didn't want it and he thought that was the way to go as well.

 I also had an MRI of lumbar spine to rule out any compressions and that turned out normall.  I go for my 12 weeks EOT bloodwork next week.  Being undetected so far has had zero effect on it...

Thanks for posting this Malcolm...

Great info, thanks Malcom. I too suffer from the burning, tingling and numbers of my hands and feet...thinking back it became noticeable while on peg/interferon about 10 years ago.  It has persisted and I just try to deal with it.   Since completing Harvoni...I continue to have the extremities pain along with joint pain and sometimes balance issues...seems you clear one thing to have to deal with another.   At least I am still SVR 

i had pn whilst on tx.but thank the lord it has virtually gone now.mind you the link between pn and cancer will have people googling like mad

Thanks fpr sharing this info Malcolm.   I wasn't aware the incidence of pn was so high for those with HCV.  The "hotfoot" and pins and needles for me seems to be worse when in bed.  Maybe I should sleep standing?  :) 

I really don't like the idea of continuous meds.  The gabapentin does seem to help a bit, but it also makes my brain fog worse and dries my mouth, soooo none of this for me.   Like others, will try to make the best of it and be thankful for SVR.  For me. keeping active and focusing on other things is the best medicine.  As with the tinnitus, when keeping busy it isn't as noticeable.  Hoping we all improve with time, but not holding my breath :)   Best wishes to all.

wow thank you all for this info. I started developing PN back when i did the Pegasys/Ribavirin treatment. Just in the left 4th and 5th toes. It seemed to go away, with the occasional flare, until now. I recently finished Viekira and Riba.  During treatment it came back with a vengeance. More on left from ankle down. Kind of thought it was treatment related.  I'm will  not inclined to take medications and at this point is more annoying than intolerable. Hoping it will improve on it's own. I find a cold soak helps. I too have some minor balance issues as well. Again thanks to all for sharing your experience.

I suspect I would be diagnosed with the same thing.  My hands and feet have been painful since mid Harvoni treatment.  My hands bother me the most purely because I need to do things in the early morning upon getting up and the stiffness, crackling, numbness etc. hurts!  A few times I have made a fist too soon and I feel some strange horrible nerve thing shoot up my arm.  I have to run ice cold water on it stop the pain.  One day I might go see the specialist I was referred to.  I just have this feeling they can't do anything for me.

  You mentioned balance may be a problem so be careful going up and down stairs. LOL, I was diagnosed with distal sensory polyneuropathy - ARV toxic neuropathy years ago, some of which was a result of HIV medications I took in my early treatment days. I suspect my long term HCV infection may have helped out along the way too. Since then I've just learned to live with it and it rarely requires pain medicine. But since I had my lower right leg amputated, and I depend so much more on my left, the lack of my ability to balance due to no sense of feeling in my left big toe is a real issue. Balance is even an issue for me walking on the slightest uneven ground. It's amazing how a small lost of one our nerve system senses can create significant life issues in ways that we otherwise take for granted. Thanks Malcolm for such an informative post, once again. 

Well this very timely as I was just thinking of my burning feet and hands the last couple of days. It seems to come and go, no numbness just "hot" feeling. I don't even like standing on the bathroom heated tile floor when it's active!! I've had it for so many years I can't remember when it started and suspect I got HCV in early 80's but didn't find out until 90's. Don't have diabetes or circulation issues. Not overweight quit smoking over 30 years ago.

Just finished clinical trial and virus undetected @4 & 8 weeks. Just went for 12 week blood work yesterday:)

Interesting how many health issues are possibly related to HCV and how much $$ it has cost the medical system over time. These new drugs to rid people of the virus will save pain, suffering and $$ and improve the quality of life for so many!!

Just to clarify.

PN is often seen as a side effect of anti-cancer treatments. However, some cancers tend to induce a PN- these are commonly lung or breast cancer, lymphoma or the various bone marrow cancers. Cheers.

I`ve had burning pain and tingling sensations in my hands and feet on and off for many years but I`ve only recently started getting numbness in my left foot when I walk any distance, mainly in my toes.  I`ve been wondering whether it was PN but haven`t thought it was worth seeing my GP about it as it`s rarely that bad that I need to take a painkiller, except occasionally at night when it prevents me sleeping.  I`ve accepted it as just another minor inconvenience that I`ve learned to live with, although I didn`t know about the association with the onset of lung cancer either. 

In my case it could a symptom of ageing although it started when I was in my mid 40s or thereabouts, so I tend to put it down to damage from having had the Hep C virus for so long. 

Very interesting and informative post, thanks Malcolm.

Thanks Malani,

I am over 50 and have had hep c 20+ years so that explains my achy feet and hands. Something we have to live with, but definitely nice to know the cause.

Hi Malcolm,

Thanks for the explanation. I have also been experiencing PN to some degree,, with more pain than numbness. Like you, I wonder if there is any real purpose in going in, just to be told what we already know. Dealing with it symptomatically is keeping it tolerable most days. Interesting info on the increased potential of pulmonary complications though. I wasn't aware of that bit of news...

Hi all,

Since achieving SVR 2.5 years ago, peripheral neuropathy (PN) has developed and is getting a little worse. After much deliberation, I finally consulted a Neurologist. Basically, I have numb toes which are worse at night, lying in bed. There is a slight burning sensation, and the L is more affected than the R. Over the last few months, the numbness has spread and now involves my L lateral foot and ankle. It's no big deal, just uncomfortable at times and I just wanted to exclude any more sinister causes.

There is a strong association between PN and HepC (up to 50% in some studies). The most popular theory is that the PN is caused by mixed cryoglobulin syndrome which causes a vasculitis which affects the nerve sheaths. The sensory component is most commonly affected, causing numbness, tingling, burning or pain (or a mixture of them).  Motor nerve component is less common, but this may cause weakness. Typically, PN affects the limbs, with the feet being the most common site. Patients aged >50 yrs and those with chronic HepC for 20+ years are more likely to be affected.

To confuse the issue, PN is common in non HepC patients. Anyone over 50 can suffer from this, particularly in alcoholics, diabetics, smokers, those with a family history etc. There are multiple drugs and toxins, immune diseases and malignancies associated with PN. The presenting symptom of PN may be the first sign of lung cancer.

Added to this are reports that Interferon may cause PN.

Knowing all this, I presented myself to a Neurologist recommended by my liver clinic. After being examined, he confirmed the PN diagnosis and the nerves involved. After a chest XRay and a reluctant CT lumbar spine (normal) he repeated all my diabetic blood profiles. I am a borderline diabetic controlled by diet, and my HbA1c is 7.0. He doubted I had any diabetic component to my PN. I do have a family history. He could do some nerve transmission tests but thought that would be a waste of time. I had recently had a lower limb doppler ultrasound, and my arteries are fine.

He has seen a lot of PN in patients referred from the liver clinic. Essentially, there is no cure or effective treatment. SVR may or may not help. Patients with pain may benefit from stuff like tramadol, gabapentin, amitriptyline or effexor ( and a whole bunch of naturopath stuff). The NSAIDs help, but should be taken with caution in cirrhotics.  PN from HepC may be very slowly progressive but is rarely a severe problem.  In my case, I must wear shoes, and be careful about any wounds on my feet. With numb feet, balance may become a problem so be careful going down stairs etc.

So as expected, the consultation was not worth much, confirming what I had expected. At least I can put up with it, and I'll call it an extra-hepatic HepC manifestation (even though that's not proven), and hope it doesn't spread any further..

I mention this for those who may have peripheral numbness, tingles or pain.