I should have backed off slowly on the Gabapentin. Both Gabapentin and Lyrica are not narcotic but they can have sever side effects to quit cold turkey. The Gabapentin made me feel super druged up at first (1800 mg) but I got used to it after awhile. The Lyrica was just the opposite, it kinda picked me up. The Lyrica seemed like a lot cleaner drug. You are right about it being much more costly. They both worked very well to block the pain for me. I don''t like taking any drug for a prolonged length of time. As soon as I'm done with the Harvoni I'm going to stop the Nortriptiline too. I'm 58 years old and I have a 76 year old mother that is in better health than I am in. And she does not take any drugs at all for a long length of time. I'm going to do what she does. If I took all the meds the doctors wanted me to take I would be taking drugs all day long........Roger
Hi Roger, I too have neuropathy and have taken both the Lyrica and Gabapentin. The Lyrica worked noticeably better for me but my copay was considerably more on this so I went to the gaba. Didn't know these meds were difficult to quit. When I started tx with Harvoni, I quit taking the Gaba. While my doc didn't indicate there would be a problem taking the Gaba while on tx, I don't want anything to reduce my chances at SVR. Appreciate the tip on the TENS unit. l'll give it a try. Between the neuropathy and the tinnitus my sleep patterns are poor. Hopefully SVR will bring some relief. Be well
basser said
Jan 27, 2015
hi. saw your post.i also get tingling in feet.they also go numb.i finished treatment about 7 weeks ago and was virus undectected.am hoping with time everything will settle down.also still get fatigued.am aware its still really early days.have had hep c since 1990 so its left its mark.am so glad to be virus undectected.will be great to be svr at 6 month test.am going to talk to consultant about numb feet see what he says.all the best
Groupergetter said
Jan 27, 2015
rblood wrote:
Hello Tim,
I have used Gabapentin. It worked really well for the pain but after I was on it for a while it started giving me other problems and I had to stop. Getting off the Gabapentin was very difficult and took a while. I read in other forums heroin addicts say it was easier to quit the heroin cold turkey than the Gabapentin. It was a rough time for me. I also gave lyrica a brief trial and it worked well also but I researched and found it was also difficult to get away from so I didn't take it too long. I found that if I use a tens machine on my feet it helps a lot! It sure would be great for the pain to go away!.......
-- Edited by rblood on Thursday 22nd of January 2015 07:50:51 PM
Hi Roger, I too have neuropathy and have taken both the Lyrica and Gabapentin. The Lyrica worked noticeably better for me but my copay was considerably more on this so I went to the gaba. Didn't know these meds were difficult to quit. When I started tx with Harvoni, I quit taking the Gaba. While my doc didn't indicate there would be a problem taking the Gaba while on tx, I don't want anything to reduce my chances at SVR. Appreciate the tip on the TENS unit. l'll give it a try. Between the neuropathy and the tinnitus my sleep patterns are poor. Hopefully SVR will bring some relief. Be well
Rubye said
Jan 27, 2015
I think I've had peripheral neuropathy in my left foot for years now but it was never diagnosed until this last year. My doctor thinks it is possible it may get better if I reach SVR. We'll see. I take old school pain meds for it since the neurontin and lyrica didn't help any. For me, the pain is a constant.
pl1952 said
Jan 22, 2015
Hi Tim,
An update to my original post: For the tingling in his fingers and numbness in his hands, my husband had surgery last year called anterior cervical discectomy and fusion. There were 2 disks pushing into his nerve that the doctor said was causing the numbness/tingling, and in fact, my husband says he feels 80% better with regard to that. Dr. said it can take a year or more for that to really get better.
As far as my tingling in both feet, I went to a neurologist last year who performed tests and could find nothing wrong. He wanted to prescribe meds, but I didn't want it. It's not a "pain", but more of a sensation that I'm aware of constantly. So for now I'll leave with it. If it becomes painful in the future, then I'll have to do something about it.
I believe in my case its caused by hep c.
rblood said
Jan 22, 2015
Hello Tim,
I have used Gabapentin. It worked really well for the pain but after I was on it for a while it started giving me other problems and I had to stop. Getting off the Gabapentin was very difficult and took a while. I read in other forums heroin addicts say it was easier to quit the heroin cold turkey than the Gabapentin. It was a rough time for me. I also gave lyrica a brief trial and it worked well also but I researched and found it was also difficult to get away from so I didn't take it too long. I found that if I use a tens machine on my feet it helps a lot! It sure would be great for the pain to go away!.......
-- Edited by rblood on Thursday 22nd of January 2015 07:50:51 PM
hrsetrdr said
Jan 22, 2015
Hi Roger,
I've not had much in the way of pain with my PN, mostly a surface numbness that involves the foot bottom and sweeps up over the top, and creeps up past the ankle into the calf area. I used Nortriptyline for a short period for cramping at the top of my calf/backside of knee, with good result. Some people with PN having pain and the lightening bolt/pin jab sensations are prescribed Gabapentin, but I cannot attest to it's effectiveness first-hand.
I know what you mean about the fatique and feeling old, I retired for those reasons and also to start treatment with the Victrellis-interferon-ribavirin triple tx.
I'm currently pursuing an aggressive search to re-enter the working/living world. Best of luck to you.
rblood said
Jan 21, 2015
Man am I glad read this thread!
I have had neuropathy in my fingers and feet for a long time. I have been on different medication over the years and some of them helped with the pain but caused problems elsewhere. I'm currently on Nortriptyline for it now. And its not working all that well. I didn't know it could be caused by hep c. This is one of the reasons I am retired now. The pain in my feet can be unbearable. I saw a chiropractor about it a while back and he said it was from my neck and hips being fouled up. It would be great if it went away after treatment. I didn't know I had hep c until 3 years ago. With the Neuropathy and fatigue I couldn't keep doing my job. I thought that I was getting old and the job was kicking my butt! I worked in shake and shingle mills doing piece work so it was very fast paced. I liked the work and I was good at it. It sure would be nice if all that pain and tiredness went away!
pl1952 said
May 18, 2014
Going there now Tim to check it out. Thank you!!
hrsetrdr said
May 17, 2014
Over on the PN section of Neurotalk forums there is a plethora of useful information on the treatment of, and experiences of fellow peripheral neuropathy patients.
pl1952 said
May 17, 2014
Thanks for weighing in Tim!
hrsetrdr said
May 17, 2014
Hi pl,
I have had peripheral neuropathy numbness in my feet since a year or so before I was diagnosed for HCV. Since then I had become aware that in some HCV cases Cryoglobulina is manifest, and causes PN symptoms. My PN has not changed any since my EOT, but at least it hasn't gotten worse. Mostly I have the numbness, the "lightening bolt" stabbing and/or tingling sensations are infrequent.
My MD sees my neuropathy as being "idiopathic" and "systemic", so I guess that we're done looking for answers.
Good luck with your treatment, and search for answers.
Isiscat2011 said
May 16, 2014
Hi again pl1952:
As much as I hated getting the HepC diagnosis it really did answer many unsolved mysteries for me about seemingly random symptoms that kept cropping up. That in itself can be a relief because it explains so much--like putting pieces of a puzzle together. Best regards to you and your husband.
pl1952 said
May 16, 2014
Thanks guys..I'll check that link out Mallani. Isiscat, for both of us its painful. For me, its like stabbing pins and its worse at night, but its there all day. It didn't start off like that though, its progressed over the year to having it all day long..My husband went through the scene you avoided, appt. after appt., creams, lotions, shots, therapy, to no avail. Finally right when he scheduled surgery to cut some nerve, we thought to look it up to see if it might be hep c related. He cancelled the surgery. We're hoping that if the source of the problem is hep c, we're thinking that if that is eliminated, so might this problem be somewhat alleviated..He sees his dr. in a couple of weeks and let's see what he thinks. I'm going to look up Cryoglobulinemic Vasculitis.. Thanks for your help! Pat
Isiscat2011 said
May 16, 2014
Hi pl1952:
I had this terrible tingling in 2-3 of the toes of one of my feet for a few years prior to Int/Riba/Incivek tx, and tx actually did relieve this for a long time, despite the fact that I did not attain SVR.
I don't know if this is the same thing you and hubby are experiencing but here is how it was for me: It wasn't just tingling; it was actually quite painful. It felt like my toes were being electrocuted. I was unable to wear most shoes comfortably. It would come and go and it seemed to be worse either at night while lying down or, almost paradoxically, during or after walking any distance. When my feet were cold it seemed to get bad too.
For many weeks I thought it was a broken toe and self-treated it as such (taping my toes together and the whole shebang) to no avail. I finally had x-rays taken and no broken toe(s). This was before I was diagnosed with HepC. It was a big unsolved mystery and frankly I didn't want to follow up with the many specialists I would inevitably have been sent to so I just lived with it. After I was diagnosed I realized it was probably related to the HepC. During and after tx these symptoms completely went away for a good 12-18 months. I have noticed it is returning but only sporadically and not to the degree it was before.
This symptom is common with HepC. It could be a number of things; there is one condition that comes to mind called Cryoglobulinemic Vasculitis. I have read that about 25 % of HepC sufferers have this. Only a doctor could diagnose you but that is a possibility. I never followed up on that particular symptom but I feel quite sure that it is related to HepC and that ridding the virus is likely to improve or possibly even eliminate the condition.
mallani said
May 16, 2014
Hi pl,
There is an association between chronic HepC and peripheral neuropathy. Here's a link. Cheers.
HCV does indeed manifest itself in this manner. Many people experience a form of neuropathy secondary to the disease. What can be signs or symptoms of something else, like diabetes for example, the neuropathy suffered over months or years either resolves or improves greatly once an individual clears the virus and an opportunity to heal is provided these various other systems. I believe you mentioned your husband (as well as yourself) have noticed increasingly aggravating symptoms over the last few years that you and your doctors may feel were the result of your worsening HCV symptoms. I think the chances for improvements in many areas are very promising and you should be hopeful, that in addition to all the things we've been discussing recently, the chance that things like his neuropathy will improve, are good. Try to treat these things symptomatically and of course let your (his) doctors know of these symptoms, but do something like keep a journal and document how things change and progress as you go forward. I did that and can look back now and see improvements in things I had documented years ago. I know that many of these things at my age wouldn't be going away on their own, so I have to believe that improvements in other areas, like SVR (woot!) has provided benefits you didn't expect to witness. Hang in there, good days are coming....
Tig
pl1952 said
May 16, 2014
Hey guys, wanted to ask you all this question...Both my husband and I are experiencing this. For the last 2 years he's been having constant nonstop tingling in several fingers of each hand. I'm coming up on a year of the same thing, but my tingling in concentrated in both feet (I don't have diabetes -- I know that's a symptom of that disease). I've researched this symptom in conjunction with Hep C and it seems this can be something called extrahepatic manifestations of hep c: diseases or conditions that affect organs other than the liver, i.e., eyes, joints, nervous system, kidneys, etc.
I was wondering how many of you guys here are experiencing, or have experienced, this tingling in either hands or feet or neuropathy. If so, did it go away after treatment?
We don't think its carpal tunnel...we both believe its attributable to the Hep C which we've both had for probably 35 years or so.
hi. saw your post.i also get tingling in feet.they also go numb.i finished treatment about 7 weeks ago and was virus undectected.am hoping with time everything will settle down.also still get fatigued.am aware its still really early days.have had hep c since 1990 so its left its mark.am so glad to be virus undectected.will be great to be svr at 6 month test.am going to talk to consultant about numb feet see what he says.all the best
Hi Roger, I too have neuropathy and have taken both the Lyrica and Gabapentin. The Lyrica worked noticeably better for me but my copay was considerably more on this so I went to the gaba. Didn't know these meds were difficult to quit. When I started tx with Harvoni, I quit taking the Gaba. While my doc didn't indicate there would be a problem taking the Gaba while on tx, I don't want anything to reduce my chances at SVR. Appreciate the tip on the TENS unit. l'll give it a try. Between the neuropathy and the tinnitus my sleep patterns are poor. Hopefully SVR will bring some relief. Be well
I think I've had peripheral neuropathy in my left foot for years now but it was never diagnosed until this last year. My doctor thinks it is possible it may get better if I reach SVR. We'll see. I take old school pain meds for it since the neurontin and lyrica didn't help any. For me, the pain is a constant.
Hi Tim,
An update to my original post: For the tingling in his fingers and numbness in his hands, my husband had surgery last year called anterior cervical discectomy and fusion. There were 2 disks pushing into his nerve that the doctor said was causing the numbness/tingling, and in fact, my husband says he feels 80% better with regard to that. Dr. said it can take a year or more for that to really get better.
As far as my tingling in both feet, I went to a neurologist last year who performed tests and could find nothing wrong. He wanted to prescribe meds, but I didn't want it. It's not a "pain", but more of a sensation that I'm aware of constantly. So for now I'll leave with it. If it becomes painful in the future, then I'll have to do something about it.
I believe in my case its caused by hep c.
Hello Tim,
I have used Gabapentin. It worked really well for the pain but after I was on it for a while it started giving me other problems and I had to stop. Getting off the Gabapentin was very difficult and took a while. I read in other forums heroin addicts say it was easier to quit the heroin cold turkey than the Gabapentin. It was a rough time for me. I also gave lyrica a brief trial and it worked well also but I researched and found it was also difficult to get away from so I didn't take it too long. I found that if I use a tens machine on my feet it helps a lot! It sure would be great for the pain to go away!.......
-- Edited by rblood on Thursday 22nd of January 2015 07:50:51 PM
Hi Roger,
I've not had much in the way of pain with my PN, mostly a surface numbness that involves the foot bottom and sweeps up over the top, and creeps up past the ankle into the calf area. I used Nortriptyline for a short period for cramping at the top of my calf/backside of knee, with good result. Some people with PN having pain and the lightening bolt/pin jab sensations are prescribed Gabapentin, but I cannot attest to it's effectiveness first-hand.
I know what you mean about the fatique and feeling old, I retired for those reasons and also to start treatment with the Victrellis-interferon-ribavirin triple tx.
I'm currently pursuing an aggressive search to re-enter the working/living world. Best of luck to you.
I have had neuropathy in my fingers and feet for a long time. I have been on different medication over the years and some of them helped with the pain but caused problems elsewhere. I'm currently on Nortriptyline for it now. And its not working all that well. I didn't know it could be caused by hep c. This is one of the reasons I am retired now. The pain in my feet can be unbearable. I saw a chiropractor about it a while back and he said it was from my neck and hips being fouled up. It would be great if it went away after treatment. I didn't know I had hep c until 3 years ago. With the Neuropathy and fatigue I couldn't keep doing my job. I thought that I was getting old and the job was kicking my butt! I worked in shake and shingle mills doing piece work so it was very fast paced. I liked the work and I was good at it. It sure would be nice if all that pain and tiredness went away!
Going there now Tim to check it out. Thank you!!
Over on the PN section of Neurotalk forums there is a plethora of useful information on the treatment of, and experiences of fellow peripheral neuropathy patients.
Thanks for weighing in Tim!
Hi pl,
I have had peripheral neuropathy numbness in my feet since a year or so before I was diagnosed for HCV. Since then I had become aware that in some HCV cases Cryoglobulina is manifest, and causes PN symptoms. My PN has not changed any since my EOT, but at least it hasn't gotten worse. Mostly I have the numbness, the "lightening bolt" stabbing and/or tingling sensations are infrequent.
My MD sees my neuropathy as being "idiopathic" and "systemic", so I guess that we're done looking for answers.
Good luck with your treatment, and search for answers.
Hi again pl1952:
As much as I hated getting the HepC diagnosis it really did answer many unsolved mysteries for me about seemingly random symptoms that kept cropping up. That in itself can be a relief because it explains so much--like putting pieces of a puzzle together. Best regards to you and your husband.
Thanks guys..I'll check that link out Mallani. Isiscat, for both of us its painful. For me, its like stabbing pins and its worse at night, but its there all day. It didn't start off like that though, its progressed over the year to having it all day long..My husband went through the scene you avoided, appt. after appt., creams, lotions, shots, therapy, to no avail. Finally right when he scheduled surgery to cut some nerve, we thought to look it up to see if it might be hep c related. He cancelled the surgery. We're hoping that if the source of the problem is hep c, we're thinking that if that is eliminated, so might this problem be somewhat alleviated..He sees his dr. in a couple of weeks and let's see what he thinks. I'm going to look up Cryoglobulinemic Vasculitis.. Thanks for your help! Pat
Hi pl1952:
I had this terrible tingling in 2-3 of the toes of one of my feet for a few years prior to Int/Riba/Incivek tx, and tx actually did relieve this for a long time, despite the fact that I did not attain SVR.
I don't know if this is the same thing you and hubby are experiencing but here is how it was for me: It wasn't just tingling; it was actually quite painful. It felt like my toes were being electrocuted. I was unable to wear most shoes comfortably. It would come and go and it seemed to be worse either at night while lying down or, almost paradoxically, during or after walking any distance. When my feet were cold it seemed to get bad too.
For many weeks I thought it was a broken toe and self-treated it as such (taping my toes together and the whole shebang) to no avail. I finally had x-rays taken and no broken toe(s). This was before I was diagnosed with HepC. It was a big unsolved mystery and frankly I didn't want to follow up with the many specialists I would inevitably have been sent to so I just lived with it. After I was diagnosed I realized it was probably related to the HepC. During and after tx these symptoms completely went away for a good 12-18 months. I have noticed it is returning but only sporadically and not to the degree it was before.
This symptom is common with HepC. It could be a number of things; there is one condition that comes to mind called Cryoglobulinemic Vasculitis. I have read that about 25 % of HepC sufferers have this. Only a doctor could diagnose you but that is a possibility. I never followed up on that particular symptom but I feel quite sure that it is related to HepC and that ridding the virus is likely to improve or possibly even eliminate the condition.
Hi pl,
There is an association between chronic HepC and peripheral neuropathy. Here's a link. Cheers.
http://www.hepatitiscentral.com/hcv/cryo/connection.html
Hi PL,
HCV does indeed manifest itself in this manner. Many people experience a form of neuropathy secondary to the disease. What can be signs or symptoms of something else, like diabetes for example, the neuropathy suffered over months or years either resolves or improves greatly once an individual clears the virus and an opportunity to heal is provided these various other systems. I believe you mentioned your husband (as well as yourself) have noticed increasingly aggravating symptoms over the last few years that you and your doctors may feel were the result of your worsening HCV symptoms. I think the chances for improvements in many areas are very promising and you should be hopeful, that in addition to all the things we've been discussing recently, the chance that things like his neuropathy will improve, are good. Try to treat these things symptomatically and of course let your (his) doctors know of these symptoms, but do something like keep a journal and document how things change and progress as you go forward. I did that and can look back now and see improvements in things I had documented years ago. I know that many of these things at my age wouldn't be going away on their own, so I have to believe that improvements in other areas, like SVR (woot!) has provided benefits you didn't expect to witness. Hang in there, good days are coming....
Tig
Hey guys, wanted to ask you all this question...Both my husband and I are experiencing this. For the last 2 years he's been having constant nonstop tingling in several fingers of each hand. I'm coming up on a year of the same thing, but my tingling in concentrated in both feet (I don't have diabetes -- I know that's a symptom of that disease). I've researched this symptom in conjunction with Hep C and it seems this can be something called extrahepatic manifestations of hep c: diseases or conditions that affect organs other than the liver, i.e., eyes, joints, nervous system, kidneys, etc.
I was wondering how many of you guys here are experiencing, or have experienced, this tingling in either hands or feet or neuropathy. If so, did it go away after treatment?
We don't think its carpal tunnel...we both believe its attributable to the Hep C which we've both had for probably 35 years or so.
Thanks!