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PEG Intron side effects?
I was diagnosed with Hep C type 1b in October 2001. I took the PEG Intron treatment in 2002 and so far there is no sign of the virus in my blood. However the treatment was very difficult for me. One of the side effects was a numbness in my feet. This hasn't gone away after four years. It has made me very clumsy and has effected my balance. If I close my eyes I can't tell if I'm upright and tend to fall. Has anyone else experianced this? Where can I go for more information about this?
Susan,
I've read many of your posts and don't know what to say. Eight times on tx boggles my mind. Hang in there. Hopefully something more effective and tolerable is coming down the pike (VT-950).
EZE,
I took 20 weeks of riba/pegasys and my feet would get very cold while on tx. Also, my right foot would twitch. It's been 1 year since my last shot and they still get very cold and my right foot still twitches. Hope this helps.
I've read many of your posts and don't know what to say. Eight times on tx boggles my mind. Hang in there. Hopefully something more effective and tolerable is coming down the pike (VT-950).
EZE,
I took 20 weeks of riba/pegasys and my feet would get very cold while on tx. Also, my right foot would twitch. It's been 1 year since my last shot and they still get very cold and my right foot still twitches. Hope this helps.
Peg-Intron reactions??? How about EVERYTHING YOU CAN THINK OF?? How about every flu symptom you've ever had combined with a massive hangover? How about it not wanting to go away even after treatment has stopped. How about chronic insomnia, depression, etc., etc. etc.? Just some of my experience after treating 8 times.
Susan
Susan
Wait a minute! I'm still convulsing with laughter over Fishdoc's story. Ah, lewd women of the world, unite! Okay, the neuropathy. Well, I really wish i could tell you someting you don't already know. This is one of those gray areas that medicine hasn't mapped out yet. The connection btwn interferon & neuropathy is known, but how to remedy it?
I never went numb, myself. Developed an excess of sensation rather than a lack of it. (Is this some kind of malevolent personality test?) I developed bad pain and tingling and throbbing and spasming in my feet about 6 months into tx, and unfortunately it has stayed with me until the present, when I'm _finally_ seeing some improvement. So it's been a long haul, say December 2004 til now, but now it's mildly annoying rather than center stage painful. Your situation strikes me as far, far worse than mine.
Two thoughts: I apparently went B12 deficient while on tx, which nobody bothered to catch in spite of the obvious neurological symptoms. So you might want to make sure your levels are okay. Getting replete again might contribute to recovery, although it won't be immediate. Second thought--gabapentin (Neurontin and its spawn, Lyrica) is an anti-convulsant which helps to break the pain cycle. It's about all that neurologists have to offer right now. Cap'n 82 left a great post about the stuff about a week ago. Maybe somebody else can advise you how to find it.
Oh yeah, I remember now--when things were at their worst I took a month's worth of nortriptyline, which is a tricyclic antidepressant, the other drug that neurologists push. Somehow the stuff calms down the hyper-stimulated nerves, which is good, but I found it so sedating that if I weren't careful I'd start drooling. Six months out of tx this was a little too much to bear, so I decided to tough it out. I put myself on a regime of mega fish oil and borage oil, B vitamins, and other goodies recommended by lef.org (Life Extension Foundation). Basically it's been very frustrating and and I had just resigned myself to this as a chronic condition when it started to improve. Also recently tried a mushroom called Lion's Mane, which has been shown to increase Nerve Growth Factor. This may or may not have had anything to do w/ the recent progress. (There's some buzz about this in the AIDS community so I decided to check it out. A website called fungi perfecti could be useful in this regard.)
EZE, it's really worrisome that you've been dealing with this for four years. What a helluva price to pay for SVR, eh? I truly hope that you find some answers and--hope beyond hope--some relief. You've certainly paid enough dues and dserve a break.
BILL: Yo, '54, hot enough for ya? & have you had that consult w/ PMC yet?
I never went numb, myself. Developed an excess of sensation rather than a lack of it. (Is this some kind of malevolent personality test?) I developed bad pain and tingling and throbbing and spasming in my feet about 6 months into tx, and unfortunately it has stayed with me until the present, when I'm _finally_ seeing some improvement. So it's been a long haul, say December 2004 til now, but now it's mildly annoying rather than center stage painful. Your situation strikes me as far, far worse than mine.
Two thoughts: I apparently went B12 deficient while on tx, which nobody bothered to catch in spite of the obvious neurological symptoms. So you might want to make sure your levels are okay. Getting replete again might contribute to recovery, although it won't be immediate. Second thought--gabapentin (Neurontin and its spawn, Lyrica) is an anti-convulsant which helps to break the pain cycle. It's about all that neurologists have to offer right now. Cap'n 82 left a great post about the stuff about a week ago. Maybe somebody else can advise you how to find it.
Oh yeah, I remember now--when things were at their worst I took a month's worth of nortriptyline, which is a tricyclic antidepressant, the other drug that neurologists push. Somehow the stuff calms down the hyper-stimulated nerves, which is good, but I found it so sedating that if I weren't careful I'd start drooling. Six months out of tx this was a little too much to bear, so I decided to tough it out. I put myself on a regime of mega fish oil and borage oil, B vitamins, and other goodies recommended by lef.org (Life Extension Foundation). Basically it's been very frustrating and and I had just resigned myself to this as a chronic condition when it started to improve. Also recently tried a mushroom called Lion's Mane, which has been shown to increase Nerve Growth Factor. This may or may not have had anything to do w/ the recent progress. (There's some buzz about this in the AIDS community so I decided to check it out. A website called fungi perfecti could be useful in this regard.)
EZE, it's really worrisome that you've been dealing with this for four years. What a helluva price to pay for SVR, eh? I truly hope that you find some answers and--hope beyond hope--some relief. You've certainly paid enough dues and dserve a break.
BILL: Yo, '54, hot enough for ya? & have you had that consult w/ PMC yet?
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