Hep C Discussion Forum

2oldman · Member

RE: New member, 65, male with neuropathy.

Kellie · Senior Member

hi 2oldman,

I'm sorry about the problems you are having. And your dilemma about whether or not to start treatment. disbelief

Just to let you know, I have a very good friend named Betty who is 76. She is also HCV+ (probably going on 30+ years). She is suffering horribly now with PN, hands and legs, along with numerous other pain issues that I think are being caused by the hcv. It started out as numbness about 15 years ago and is now progressed to a stage of constant pain. Just sharing....

Kellie · Senior Member

No, I reject that Ios- like I said we haven't even scratched the surface on the sx of long term hcv. My friend has only had diabetes for a few years and she doesn't take insulin. She also has an old doctor that tells her she doesn't need treatment because of her age and she's asymptomatic, which I think is criminal. So there is really no proof whether it is caused by the hcv or diabetes. So I was just sharing that because of my friends personal experience with it.

-- Edited by Kellie on Tuesday 17th of September 2013 02:06:29 AM

Cinnamon Girl · Guru

Hi Chris, sorry you`re in so much discomfort with your PN symptoms, it must be causing you a lot of distress. But I don`t think you should jump to any conclusions until you`ve had a second opinion from a good doctor. There are all-oral treatments for genotype 1`s in the pipeline, and as Malcolm said, another biopsy or fibroscan would give you up to date information on the current health of your liver, which would help you decide whether to wait for treatment or not.

Best of luck with finding a suitable doctor in Southern CA, you need to see one who is experienced with treating Hep C. And in the meantime let`s hope your symptoms do settle down soon.

ios9 · Senior Member

Hi Kellie, 2oldman smile

Kellie, you wrote before that your dear friend suffers from diabetes, so her PN could very probably be caused by it. 2oldman might also suffer from PN caused by HVC but it does not means it will get to your friend's terrible state.

Here is what says "HCVADVOCATE.ORG" :

"The most common cause of PN is diabetes it is estimated that 34% of the diabetic population has PN. This compares to a prevalence of 2.4 - 8% in the general population".

2oldman : I beleive you'r right by asking yourself what is the best, as, like you said, one never know what Interferon could do with your PN problem.

Here from same article :

"treatment of PN with interferon-based therapy has produced mixed results and there is a chance that interferon could exacerbate existing PN. Generally, treatment of PN in someone with hepatitis C is done on a case-by-case basis evaluating the person with PN based on the severity of the PN and chances of responding to various treatments including interferon-based therapy".

I beleive you have to find a good doc,and decide with him what to do. Do not take a decision just right now,under emotional stress because of what you read or are told.

One of my friend is now SVR but she developed during her treatment a Parkinson desease (neurodegenerative disorder). I'm not sure this is better than to have kept living with the HVC.

One has to think twice before taking a decision, also see more than one doc too, and make sure your liver is really free from cirrhosis.

Hope you will find a wonderful doc where you are going for winter smile

Warm regards,

Do

-- Edited by ios9 on Monday 16th of September 2013 09:05:53 PM

-- Edited by ios9 on Monday 16th of September 2013 09:07:59 PM

2oldman · Member

Hey loopy....

Thanks for your report. I'm trying to hold out a few weeks to get to Southern CA (my yearly winter sojourn) and get more diagnoses from what I hope will be better doctors. This thing seems to be changing by the day, and I even feel it a bit in my hands.

It's driving me nuts, and I can only hope it's a temporary flareup and will calm down soon. Fortunately I have no sharp pains or burning or tingling, just numbness.

I vacillate between "Are you nuts, get this treated right now!" and "Now hold on here... this will pass and we don't want treatment making it even worse."

-- Edited by 2oldman on Monday 16th of September 2013 04:27:17 PM

Loopy Lisa · Guru

Hi Zoldman,

The HVC virus caused me a temporary partial paralysis, started off with pain in my neck, spread all over my body and when the nerves stopped working I didn't have any feeling in those areas apart from the sensation if I was scratched if someone was tickling me (not perm nerve damage). Hearing went really loud, now i have loss of hearing, I have motor and co-orination problems especially if i'm tired and sometimes nerves twitch and pulls on my skin which is annoying. Onset was over days and after a few months went back to normal. Prior and after I have tingles and sharp shoots in toes and fingers and sometimes numbness,HCV is only called a Hep Virus because of the swollen liver, but it is closer to the West Nile Fever virus than hep A or B. I also was diagnosed as having Fibromyalgia but all other tests normal, normal, normal. When I had my paralysis I didn't know I had Hep C so they classed it as a Post Viral infection.......WRONG, viral infection! I have read other people have had nerve problems and paralysis. But then after a couple of decades i think it is realistic to have some problems from the Virus. I don't have problems with my liver, it is all the rest of me lol! x

2oldman · Member

mallani wrote:
but interferon should be avoided as it can cause PN by itself. You seem reluctant to entertain the idea of Rx.

How can I be treated sans interferon? Isn't that still the medicine du jour? I'm not reluctant to treat IF that will give me a chance of reversing or arresting PN, but I haven't yet found a single doctor willing to say that.

It seems to be boiling down to me and me alone making this decision, and that's scary.

mallani · Guru

Hi Chris,

You obviously have peripheral neuropathy, and from your posts, it appears to be both motor and sensory. The question must be, is this due to Chronic HepC. The answer is probably, as PN is common, both from the direct effect of the virus on nerve sheaths, or vasculitis. It may or may not be associated with cryoglobulinaemia. Should you have Tx for HepC and what would be the best Rx? The answer must be yes, but interferon should be avoided as it can cause PN by itself. You seem reluctant to entertain the idea of Rx. Perhaps if you had another biopsy or Fibroscan, this may help you decide. If you have progressed to F3-4 or F4, treatment would be easier to accept. SVR may cure your PN, so I would seek it. You would need to wait for an all oral Rx, but I would start looking now. Cheers.

2oldman · Member

I have thought about inversion, yes. Can't hurt, I guess. Thanks.

Matt Chris · Guru

Hello Chris

This something a little out of the orninary but it did work for me with my back problems I had years ago and I still use it for my own Neuropathy in my toes.

Have you ever heard of Inversion Therapy? It's hanging upside down with a special Inversion device. The Mayo Clinic cautions those that have high blood pressure, glaucoma or heart problems to be careful in its use.

There is a lot to read about it on the Internet

Matt

2oldman · Member

My latest MD visit resulted in a "Don't worry about it" and take this anti-depressant.

It's hard to ignore ( and not worry) when you feel as if your feet are being consumed from the inside out. Like one of those worm things in Alien is going to pop out of my chest any day now.

I need a specialist.

-- Edited by 2oldman on Saturday 14th of September 2013 05:22:44 PM

Tig · Admin

I've had limited success with it myself. My neurologist started me on it years ago following several cervical spine surgeries. I was having numbness but that's from the physical damage and it only mildly helps the resulting nerve pain. But everything is helpful when nothing else is working either. After reading about the potential for neuritis (various areas as well) from IFN Alpha or Beta (it seems to be more suspect than the Alpha), I wouldn't rule out the possibility that it could play a part in PN. I don't think the medical community is ready to put that to bed yet either because there is still plenty of discussion going on about it. I hope something comes along, because it's not the most pleasant experience I've had! Instead of the numbing, burning pain, a little bit of exhilaration would be nice biggrin biggrin !! Best of luck finding your answer!

hrsetrdr · Guru

Hi Tim,

My GP wrote me a Rx for Gabapentin a couple of years ago for my PN, but the drug didn't address the issue that I was reporting, which was numbness. I like and respect my doctor, but this is a classic case of not listening to what the patient is saying. I'm glad to hear that Gabapentin is working for your PN pains and other symptoms.

rotting to the core · Member

Wow....

Of course I continue to try to understand why I have been so miserable for so long. And now I have found a measurable improvement in my pains and suffering in gabapentin. Which too is used to treat neuropathy. I cant help buy consider the possibility of such a manifestation within my self. I have also thought I surely must have fibromyalgia.

Thank you for the info,

Tim

Tig · Admin

Old article but is interesting considering this discussion. I had wondered about IFN induced neuritis but many articles don't give much support toward a chemical induced neuritis. But that doesn't mean HCV can't be an instigator. There is a lot of information on it but since you are treatment naive Oldman, HCV is likely.

http://www.hepatitis-central.com/hcv/cryo/connection.html

-- Edited by Tig56 on Monday 19th of August 2013 02:11:34 AM

AngieV123 · Senior Member

I have had hcv for a very long time and I too have strange nerve things and numbness in my feet.I have always chalked it up to pinched nerves in my back or migraine related neurological stuff going on. It's really hard to tell what is doing what..which is probably why doctors can't say for sure that hcv is a cause. I don't doubt for a second that hcv can cause other issues though..to include the neuropathy you speak of.

hrsetrdr · Guru

Chris,

Welcome to the forum. I too have peripheral neuropathy (PN) numbness in my feet; the doctor has no idea why. Cryoglobulinemia "can be" one possible cause of PN in lower extremities, the following article may be of interest:

https://www.foundationforpn.org/livingwithperipheralneuropathy/causes/cryoglobulinemia.cfm

2oldman · Member

My last biopsy was 2007. Given my blood tests of 2012 my gastro doesn't think another one is necessary. As for the viral load, I can't say other than going to another doctor.

mallani · Guru

Hi Chris,

With a VL in the millions, it's difficult to imagine no fibrosis after 44 years of hepatocyte damage. When was your last biopsy and what are your current AST and ALT levels. I don't mean to be nosy, but it's difficult to give advice about whether treatment would be beneficial without these basic parameters. The Viral Load does fluctuate, but it's still useful. Cheers.

2oldman · Member

I've had all kinds of exams done over the years, including electric shock to test the nerve conduction. I don't have any spinal problems, diabetes, or any other diseases. Nobody can find any cause other than the Hep, but no doctor will come right out and say that. What they do say is that treatment could exacerbate the PN, and I sure don't need that. However, to just sit and watch the PN slowly consume my feet (and possibly hands) doesn't sound like fun either.

My genotype is 1A, and my viral load is in the millions. According to my gastro (from 2002) the viral load doesn't mean much to him because it varies so much.

mallani · Guru

Hi and welcome Chris,

You're not an old man, just middle-aged. Like you, I acquired HCV in 1969. Unlike you, I drank heavily until 1996. Serial liver biopsies showed the steady progression to cirrhosis. Hopefully, 48 weeks of triple Rx with Victrelis appear to have done the job, and I'll get my 28 week post-Rx VL next week.

Peripheral neuropathy can be caused by HCV, but also by a variety of other causes. Have you had a CT of your spine to exclude a disc problem? Some symptoms may be caused by chronic HCV but it is difficult to be sure. I take it you've had a liver biopsy to show the lack of fibrosis. If your AST and ALT are normal I can understand why you wouldn't want Rx. Do you know your Genotype and Viral Load? Good luck.

Kellie · Senior Member

Hi Chris, welcome! smile One just never knows how many sx hcv causes and like you said alot of drs. are reluctant to say so. I have a good friend who is hepc+ in her mid70's. Her liver is in good shape too, like yours. She has severe neuropathy in her feet, but she has diabetes also. So it could be caused by the latter. I personally think its a combination of both. Maybe someone else will chime in about this. Welcome again though, this is a good place to ask questions and get support.

ios9 · Senior Member

Welcome Chris :)

I do no know about your neurologic problem myself, but there is so many friendly people here, you might found some answers.

Have a nice day,

Do

ios9 · Senior Member

In the article I gave you the link, it does say that medications are a risk factor for PN. It might be why your doc does not want to put you on a treatment, to do not make it worse.

-- Edited by ios9 on Wednesday 14th of August 2013 11:10:33 PM

2oldman · Member

I don't doubt it either. I remember way back in 2000 attending a C support group meeting of about 150, and asking if anyone had PN. About 10% raised their hands - but maybe 50% of those didn't know what PN was! :) Whether that's statistically valid, I don't know. At that time PN wasn't even considered connected to C. I did some research and found a connection between HIV and PN, so, yeah, that's a virus too.

And no, I don't have cryo..

It's so difficult to know what to do. Am I treating something that isn't the cause at all? If I do, will the Rx make it worse? Will the PN come and go, or just keep getting worse until what.... I can't walk?

My fingers are starting to get numb tips. I'm a musician and I don't need that one bit. I had a bout of arthritis last year, but that subsided, so.. I just don't know how to deal with this PN.

Thanks for listening

-- Edited by 2oldman on Wednesday 14th of August 2013 10:52:29 PM

2oldman · Member

Thanks. I'm almost sure that's the PN's cause. Now I just don't know what to do about it.

-- Edited by 2oldman on Wednesday 14th of August 2013 09:01:28 PM

ios9 · Senior Member

I've found this :

"HCV and PN :

The exact cause of HCV-related PN is not completely understood, but there is some speculation that it could be caused by HCV RNA (viral load) deposits in blood vessels that supply oxygen to the nerves, HCV infection of the nerves, an inflammation process in the nerves, and/or an HCV-related immune disorder. In the past it was believed that only people with cryoglobulinemia developed HCV-related PN but it has been proven that HCV-related PN can occur even in the absence of cryoglobulinemia. Studies have found that up to 15.3% of the HCV population has PN."

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/PN.pdf

-- Edited by ios9 on Wednesday 14th of August 2013 08:39:40 PM

2oldman · Member

..

-- Edited by 2oldman on Wednesday 14th of August 2013 08:20:53 PM

2oldman · Member

Hello..

I'm Chris, I'm 65, male, contracted Hep C in 1969. Never treated.

My liver shows only slight inflammation with no fibrosis. That's pretty good, perhaps because I've never been much of a drinker. That's very good news. The bad news is neuropathy.

My feet have exhibited numb spots for years, but just in the last year things have gotten worse. I'm starting to have trouble controlling my left foot - it feels like there's a 'webbing' inside my foot. I can feel touching on the foot, the numbness seems to emanate from the inside out.

I don't know what to do. Doctors cannot admit the C is doing this, nor can they recommend I treat.

-- Edited by 2oldman on Wednesday 14th of August 2013 04:39:36 PM

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