Questions For Those Who've Had Peripheral Neuropathy Experiences During Tx

For the past week I have been experiencing peripheral neuropathy-like symptoms. I now have constant 'tingling' and occasional sharp aches and pains in my left foot and fingers. I have intermittent loss of sensation in my calf, thigh, and hand - all on my left side.

I haven't spoken to my doc's office yet, in hopes that things would improve over the course of the week. The opposite has occured - and the symptoms are now more constant and pronounced. I am now greatly concerned about this and will be contacting their office on Monday morning. One of the concerns is that whatever symptoms/damage I may be currently experiencing could turn out to be permanent. Another is that this may bring a premature end to my tx - (I will be doing shot #34 this weekend).


A few questions:

- is it considered permanent once a patient experiences it? Or can it be transient in nature?

- given that I still have 15 weeks to go to reach 48, is it even a reasonable consideration that I could make it the entire rest-of-the-way without doing permanant damage?

- are there any doctors out there who have expertise in Hep C tx and neuropathy? I would imagine that there's a HUGE grey area of knowledge and data on the effects of tx related to neuropathy. If so, I'd love to be able to contact one (or more) and run some questions by them - if they'd be willing.



As much as I want to kick this virus out of me once-and-for-all, I'm not willing continue if permanent neurological damage is in the cards.


Any and all help and insight are greatly appreciated.


Sincerely,

TnHepGuy

[Sam Hall]

i think it is important that you speak with the specialists as there can be so many reasons for PN. I started experiencing it about week 23/26 and it grew in such intensity in all limbs and face, especially lips. I have been experiencing it with little respite until about 3 weeks ago. At it's worse it felt as if i was in an ice storm and it was scary. I truely believed that it was permanent. I also found that it would strengthen, sympton wise, post tx if i was stressed. This past 3 weeks have been so much better.
Reading up i found that the most likely culprit was Ribavirin although hcv itself can cause it. The drug induced version is more likely to be transient. As with yourself i would not have gone as far as i did with the Riba had i known the potential damage i was dealing with. Ok now it is passing but if i dont clear it will be a major factor in any decision i make about future treatmennt. As for people who do have this condition full time i take my hat off to them coz i dont think i could tolerate it. Good Luck!
S H
ps There are quite a few sites on the subject(as i'm sure you will have seen).

[layla]

I had slight PN before tx for years but didn't kow what it was. I also had it during tx but it was very slight and rare. After about 1 month off tx it came on really strong and scared me. It got worse for days maybe up to a week then after a week or 10 days it slowly went away. The I got it again but very slight. Now and again I feel a little tingling but I think it is just diminishing. I can only tell you what it was like for me and I don't know to much about it but it did scare me when it was strong. I hope it goes away. I hate to see you have to cut back or stop tx. When I told my doc he did not cut back my tx but then again during tx mine was slight. You should talk to your doc about your concerns. LL

[cuteus]

All my nervous system problems that existed prior to Tx, were enhanced during Tx; carpal tunnel, herniated disc/nerve pinching and then there is the hypersensitivity in my hands and feet (noticed during Tx) to cold, heat, and tingling substances like menthol. The hypersentivity is also in my mouth.
The tingling in my hands is from CTS, the tunnel inflammation pressing on the carpal nerve; the hip/leg pain- i recently found out I have another herniated disc pressing on a nerve...so that causes the hip  pain. The other stuff, I can't explain. Either ifn or riba seem to "awaken" the nerve endings you did not know existed.  
Get an EMG from a neurologist. It is the only way to find out if nerve damage exixts, coupled with an MRI.
Hope you get some answers to ease your fears soon.
Increase your b vitamins intake and any nutrient to feeds the nervous system.

[tina-b]

I am sorry you are having difficulties. My man did 34/48 Friday. You and he are on the same time frame. I will be giving him the third degree when he gets up. He says he hurts everywhere most of the time but hasn't been spicific. I think right now he hates the meds worse than he hates the dragon. He has been having "the shakes" if he goes to long between meals or snacks, His glucose (sp)has been somewhat low according to the last couple of labs. I think it has been running about 68-70 but I can't remember and that is not fasting. I am concerned and will be asking the doc in November about it. I may ask sooner. I just want him to be done with this. Please keep up posted.
TinaB

[Amerabrit]

I have started to experience numbness in my right hand/arm, I thought it was because i sleeping on it but after reading this thread I'm not so sure?  Good luck with your Drs appt, please let us know how things go.  Best to you.

[Califia]

David,

Sorry to hear that you're experiencing this.  (And Sam--someone you should give you a medal.)   Here's some relevant info from the _Side Effects Management Handbook" produced by the Projects in Knowledge Education Initiaitive in Gastroenterology--see PDF files on website--Care & Counsel II.  ______________________________________________________


"Pathophysiology:  
Paresthesias are an increase or decrease in sensation  as a result of damage to the large-diameter fibers of neural tissues.  Cytokines produced in the periphery also can affect the brain through several possible mechanisms....

These effects of interferon correlate with the etiology of peripheral neuropathies, such as paresthesias.  Patients with mild, acute neurotoxicity can have severe and progressive residual symptoms.  In general, the length of time the patient is treated with interferon is not strogly rel,ated to neurotoxicity.  More profound paresthesias occur in individuals who have received previous neurotoxic treatment....  These effects of interferon therapy may appear and persist months after therapy is completed or discontinued.  Peripheral neuropathy can reverse spontaneously or may respond to treatments, as indicated in the "Treatment Strategies" section below....

Treatment Strategies
1. Reduce/eliminate (if posible) use of sedatives, tranquilizers, and antiemetics that may increase toxicity.
2. Encourage standard doses of vitamins, and higher doses if patients have deficicncies.
Encourage weight-bearing exercises.
4. Suggest topical application of capsaicin . . .  which works by depleting neuropeptides....
5. Conside pharmacologic therapies (in approximate order of preference):  . . . low-dose tricyclic antidepressants . . . or antiprostraglandine like naproxen . . . Trazodone...steroids...opioids."
_______________________________________________________

David, I do know that 600 mg  daily of Alpha Lipoic Acid (thiotic acid) is prescribed  both for prevention and reversal of diabetic neuropathy.    thebody.com may still have a good ALA data posted--it's been a while since I looked.

I hope this contributes in some way to your speedy recovery from these effects.   All best!

[TnHepGuy_]

Thank you to everyone for you kind words, thoughts - and for taking the time to answer.


<u>Scott</u> - yeah, I'm going to look into every option I can find about how to proceed with this. When I call my PA tomorrow, I'm going to ask her to get a recommendation from my GI for a neurologist in my area who has dealt with Hep C patients and interferon (assuming any of them have). I am also going to get in touch with an oncologist I know  - who I've spoken with once already regarding Neupogen. I'm sure he has cancer patients on chemo and radiation who experience neuropathy. How goes your recovery these days?

<u>Paul Hall</u> - It's real good to hear that you've had such dramatic improvement lately with your PN. What little I have found suggests that it can be the Hep C, the interferon, the cumulative # of tx's of interferon over time (this is my second go-round), the ribavirin, cryoglobulemia - and who-the-heck-knows what else. I may ask tomorrow about getting the test for  cryoglobulemia, which I have read that 1 out of every 8 people who have it also have Hep C. I have also read where the tx can bring out the underlying symptoms of PN in cryo patients.

<u>layla</u> - good to hear that your PN symptoms have diminished and that your entire recovery is doing better, too. Anything neurological is scary stuff, indeed. I've been taking Allegra for some non-stop allergy-related stuff the past 11 days. Makes me wonder about the possibility that that is playing some sort of interaction role here.

<u>cuteus</u> - I've always taken a strong B-supplement. It seems like the tx can be murder on nerves. Of course you don't really hear squat about that aspect from the docs or the pharmaceutical companies. It's interesting to see how many people in just the small sampling here at MedHelp have mentioned having PN symptoms. I'm sure that most docs that treat Hep C patients look at this and say, "Not my yob, Man!"

<u>tina-b</u> - definately call right away about your hub's glucose level. No need to have him running at such a low level when they can easily treat and monitor that. I'm sure he feels lousy enough without having that lumped on top of the rest of this tx mess.

<u>amerabrit</u> - if you are getting these symptoms too, you should definitley mention it to your doc. I'm not expecting much in the way of answers from my doc's office. I'm just hoping to eventually get pointed in the right direction to a medical professional who has seen this in Hep C patients before - and that may be asking too much.

<u>califia</u> - thanks a ton for digging up such good information about this. Interesting that under strategy #5 they list taking Trazodone, which I've been on now (100 mg. as a sleep aid) for about 27 weeks. I was taking Alpha-Lipoic Acid, 600 mg/day, for years - but stopped taking after beginning tx. I'm going to have to consider taking it once again - though there's always the concern about any potential interactions with the tx meds.

<u>Dave_B</u> - congratulations of finishing tx - and best to you on your upcoming results. Good to hear that your PN symptoms have improved. And thanks for the reality check. I'm sticking with tx as long as I can - at least until I learn that I should do otherwise. I will be injecting approximately 200 mcg. of Pegasys into my leg 1 hour and 45 minutes from now - listening to the last gasps of those few remaing virons - as they perish like Dracula having a ray of light shed in his direction.


TnHepGuy

[Califia]

The above was taken from a great medical reference which we all  have available to us.  You can order a hard copy from:
http://www.projectsinknowledge.com/recent/indexg.html

The project is underwritten by Schering Hepatitis innovations.

I ordered two, one for my personal physician and one for myself.

[Dave_B]

I finished a 48 week treatment one month ago. There was no detectable virus at weeks 12 and 48, so I

[lackalustre]

i developed numbness running down the backs of my legs during tx.    the riba seemed to be doing it from what i could tell as it was worse after i took the pills.   now a year later after tx. its mostly gone although lately a little crawly feelings have returned around the numb spots on the back of my lower legs.  maybe thats a sign of life coming back even more. anyways  some of this does get better after tx.!!

[Mother Margaret]

Do you also have fatigue?

The reason I ask is that there is a chemical which can cause both liver damage and the kind of neuropathy you are talking about.  It causes lots of other things too. (We're not allowed to share web sites here are we?)

I believe I have found the cause of this fatigue with multiple odd symptoms:  such as in CFIDS, 'gulf war syndrome' etc (Many in the public affected and Military most especially)

You see doctors in neurological forums such as this also commenting on red eyes, etc. Eye membranes and cuticle area of hand is the worst exposure to 2-butoxyethanol.

The fatigue is acquired autoimmune hemolytic anemia. The immune system is prematurely destroying the red blood cells, but this anemia does not show up in the regular bloodwork. Look at the reticulocyte count. It will be higher than normal because the bone marrow is working double time making new red blood cells. ... but over time it drops and drops and drops. Is there blood in your urine? Red blood cell counts are not the normal ratio of mature to immature ... there are too many immature red blood cells. Are ferritin levels on the low side? There is something going on with the proteins, not enough and that may be why the joints ache, etc.

The chemical exposure that would cause these things is 2-butoxyethanol.  It is in gun cleaners, and all kinds of cleaners; maybe in jet fuel. You must learn what products you use today that contain such ... or you can push yourself towards the cancers ... which are multiple and which this chemical is the root cause of. But what gets blamed? heart, diabetes, all kinds of other secondary things


Protect Yourself From Future Harm

Check for what products contain 2-butoxyethanol
(CAS Registry Number: 000111-76-2)
in the Household Products Data Base
http://hpd.nlm.nih.gov/ingredients.htm

Also check for the complex version Diethylene glycol monobutyl ether or 2-2-butoxyethanol (CAS Registry Number: 000112-34-5) 5% concentration is not safe for home use, per one expert in product development.

If you want to know about a specific product you use, put the name of the product, comma, and then the letters MSDS (Stands for Material Safety Data Sheet) and the internet should be able to give enough choices that you can see if this chemical is in the product you are using.

People do not take the warnings seriously, but they should. Wear goggles and chemical retardant gloves and have ventilation equivalent to outdoors.

On the other hand, most of the time the ingredient is NOT disclosed and you have to know what type of warnings might indicate such. Something really needs to change here. A clean bathtub is not worth someone's life. The price we are paying is NOT worth the benefit received. It is an unnecessary harm.

If you have a horrible fatigue of unknown cause, and a lot of other odd symptoms, would you consider participating in a preliminary health survey? Maybe the founders of this forum will see that there is a medical break-thru here and will assist me.

[mikesimon]

From Medscape    http://www.medscape.com/viewarticle/472992?src=search

Management of Patient With Hepatitis C and Peripheral Neuropathy?
Question
What is the recommended approach to managing a patient infected with hepatitis C virus who has been on combination interferon and ribavirin therapy and who has developed peripheral neuropathy? Neuropathy confirmed on electric/conduction studies.

Expert
Response from David Bernstein, MD
Associate Professor, SUNY Downstate School of Medicine, Brooklyn, New York; Director of Hepatology, North Shore University Hospital, Manhasset, New York


The development of peripheral neuropathy in a patient receiving combination interferon and ribavirin therapy for treatment of chronic hepatitis C infection is uncommon. There have been case reports of certain peripheral neurologic conditions -- such as axonal polyneuropathy, multiple mononeuropathies, chronic inflammatory demyelinating polyneuropathy, and vasculitic neuropathy -- occurring during interferon therapy. However, because of the rarity of these conditions occurring as a result of antiviral therapy for hepatitis C, there is no consensus regarding their management. Should one of these rare peripheral neuropathies occur during interferon-based therapy, interferon should be immediately discontinued.

Discontinuation of interferon has led to the resolution of peripheral neuropathy in some patients. If symptoms continue following cessation of interferon-based regimens, the use of oral steroids as first-line agents is recommended. Plasma exchange has been reported to be successful in a single patient who developed chronic inflammatory demyelinating polyneuropathy during a course of interferon therapy.

Posted 04/20/2004

I started to search for any of the conditions mentioned in the article along with the word "interferon" and got some sites, some of which required subscription. You might want to try this approach. I'm sorry this problem has surfaced and hope you can get some solid answers and overcome this new obstacle. Good luck. Mike

[cuteus]

Dr. Bernstein happens to be my GI, but i have never read any of his publishings. They see tons of patients at that Hospital both on trials and as a private paractice, so I guess if he says is rare, he has placed it in the perspective of thousands of patients as opposed to a few hundred at this forum.

On the other hand, knowing what his approach would be, I might skip mentioning a neuropathy to him while on Tx...ok, unless it is severe.

I wonder if his articles are posted in medscape frequently and what it says about tx extension, since he gave me such a hard time about it originally...

[mikesimon]

I've seen his articles before on Medscape. Here are just a few.
http://www.medscape.com/viewarticle/418552
http://www.medscape.com/viewarticle/418553
http://www.medscape.com/viewarticle/420824
http://www.medscape.com/viewarticle/464166?src=search

Mike

[cuteus]

wow! thanks for that info, it made for some interesting reading.