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Neuropathy During or After Tx
Needless to say, please feel free to use this thread for all manner of information exchange.
Q: Anyone develop interferon-induced neuropathy in your feet or hands? Any experience with Nortriptyline? After living with this condition for over a year, during & post-tx, I'm beginning to think about actually swallowing this medication my internist has prescribed for it. The stuff has a long list of "side" effects, naturally, and is a tricyclic antidepressant that also somehow alleviates nerve pain. I'm reluctant to go down that pharmaceutical path, however, although the constant pain and throbbing is really driving me nuts. It's a real toss-up, this one. Would appreciate any feedback. And by the way, for all of you on treatment, I do consider this a minor problem in the larger scheme of things. I don't regret treating one bit and consider the nerve inflammation a small price to pay for (probably) clearing the virus.
Q: Anyone develop interferon-induced neuropathy in your feet or hands? Any experience with Nortriptyline? After living with this condition for over a year, during & post-tx, I'm beginning to think about actually swallowing this medication my internist has prescribed for it. The stuff has a long list of "side" effects, naturally, and is a tricyclic antidepressant that also somehow alleviates nerve pain. I'm reluctant to go down that pharmaceutical path, however, although the constant pain and throbbing is really driving me nuts. It's a real toss-up, this one. Would appreciate any feedback. And by the way, for all of you on treatment, I do consider this a minor problem in the larger scheme of things. I don't regret treating one bit and consider the nerve inflammation a small price to pay for (probably) clearing the virus.
Seems that is a problem. Us addictive types manage to morph and meld into every life form. Find a place on the food chain- find an addictive type.
..."do they allow people with addiction problems to be an Assistant Boy Scoutmaster?" ...
Seems they allow anyone interested in teaching about overcoming obstacles. Fortunately,I guess, I had bigger priorities when I was actively addicted than going out in the woods trying to keep track of a bunch of wild 12-18yrolds goin through one of the most confusing time of their lives.
In fact when I was involved as a Scout Leader, the troop met on Monday nights in the hall at a church. Tuesday nights I was in the exact same room for recovery support. Same church leaders saw me comin and goin both nights. They just smiled and said 'Hi, Don.'
Thank you Space, Nice of you to start a dialogue regarding past experiences that help us get through struggles like tx.
Be Well,
Don
..."do they allow people with addiction problems to be an Assistant Boy Scoutmaster?" ...
Seems they allow anyone interested in teaching about overcoming obstacles. Fortunately,I guess, I had bigger priorities when I was actively addicted than going out in the woods trying to keep track of a bunch of wild 12-18yrolds goin through one of the most confusing time of their lives.
In fact when I was involved as a Scout Leader, the troop met on Monday nights in the hall at a church. Tuesday nights I was in the exact same room for recovery support. Same church leaders saw me comin and goin both nights. They just smiled and said 'Hi, Don.'
Thank you Space, Nice of you to start a dialogue regarding past experiences that help us get through struggles like tx.
Be Well,
Don
Sorry to read your having NP. I got it my 70th week and it got worse daily. Since I only was going to 72 weeks my doc just had me stop. It went away pretty fast. Many of my sx lasted a long time, some over a year, but eventually all went away (except thryoid loss of coarse). Hopefully this will get better over time. Glad to see you are still hear helping other. LL
the subject tends to expand all by itself--calling it "cute" doesn't always help.....
2irish: thanks for the laugh-it was so well timed!-i really appreciate yr humor,& i need all i can get lately...
Strator-ienjoy yr posts always--you are a very real & candid Man that i respect for honesty,humor and facing yr own private demons..Hey,absolutely no one is perfect...I personally feel that criticism of yr posts r frm lonely alienated folks that r striking-out in the game of life.......You,my friend are hitting real homeruns...oh by the by,football story-i played the game thru h.s.--you little determined guys who hit sooo darn low were a real menace on the field,(i'm 6' 3"),,i prefer to play on yr team--WAY More Fun!!!!!!---hav a GOOD WEEKEND EVERYbody-and i do mean everybody,i have nothing but sympathy & compassion for any & all doin trx-even split-personalitys w anger issues-(((all)))
Strator-ienjoy yr posts always--you are a very real & candid Man that i respect for honesty,humor and facing yr own private demons..Hey,absolutely no one is perfect...I personally feel that criticism of yr posts r frm lonely alienated folks that r striking-out in the game of life.......You,my friend are hitting real homeruns...oh by the by,football story-i played the game thru h.s.--you little determined guys who hit sooo darn low were a real menace on the field,(i'm 6' 3"),,i prefer to play on yr team--WAY More Fun!!!!!!---hav a GOOD WEEKEND EVERYbody-and i do mean everybody,i have nothing but sympathy & compassion for any & all doin trx-even split-personalitys w anger issues-(((all)))
My neuropathy improved significantly by using the supplement protocol that's recommended for diabetic neuropathy: Acetyl L-Carnitine (3 grams; 2 divided doses) Evening Primrose Oil (3 grams grams; 2 divided doses) and Alpha Lipoic Acid (600 mg; 2 divided doses).
Now, I do have to tell you it didn't produce magical results overnight. It took a good three months or so to really make a difference. But the difference is indeed significant. I still have some occassional low-level numbness and tingling, but it is nothing more than a mild nuisance at this point.
Susan
Now, I do have to tell you it didn't produce magical results overnight. It took a good three months or so to really make a difference. But the difference is indeed significant. I still have some occassional low-level numbness and tingling, but it is nothing more than a mild nuisance at this point.
Susan
Sorry to hear that this is lingering and not moving on. Is it burning in the hands/feet or more like numbness? I'm sure you have covered all points on check out as thorough as you are but diabetes can cause that also. Also,,,,You are still out of the tx by not awhole lot of months and it has taken me almost full year to let go of some sides. I certaintly hope this is the case here also....
LOL-Luv, A lttle crankier on the weekends huh- guess while the cats away...
Gee let's see-I don't recall relating anything about my experiences as,yes, a trained and certified former Assistant Boy Scoutmaster. But what the hey..brain fog?
Course if you refer something else, well, my bad, thought we ALL knew who've experienced reality that it's far too interesting on it's own to screw up with any embellishments.
Curious...if one type's kalio2 into google it brings one to a site called DREAMroutes, sort of an adventure club....Kissin cousins maybe?
All my Wuv
Gee let's see-I don't recall relating anything about my experiences as,yes, a trained and certified former Assistant Boy Scoutmaster. But what the hey..brain fog?
Course if you refer something else, well, my bad, thought we ALL knew who've experienced reality that it's far too interesting on it's own to screw up with any embellishments.
Curious...if one type's kalio2 into google it brings one to a site called DREAMroutes, sort of an adventure club....Kissin cousins maybe?
All my Wuv
LOL. No volunteers here pal! But I know where you're coming from. Sometimes on tx, I wake up, look in the mirror, and think Man I would take just about any head I could get today.
Where are my manners? Got myself all in a lather with that vx-950 nonsense, I guess. Anyways, when forsee gets her butt up here let's get together for a prune juice or something. Hey, I'll buy - all the prune juice you can drink!
Hey lady- How's it going. Just hopin your well. Haven't noticed a post from you lately, and you said you were scheduled the 6th for bx. I was fairly kocked out the day after my bx. When you are up to it amybe you can update us.
Stay Well,
Don
Stay Well,
Don
Magnum -
"....kill people with my bare hands at times (especially car salesmen and salesmen at..."
You makes me glad I'm not selling vacuum cleaners door to door anymore.
When I first started talking with people about treatment, I couldn't believe some of the stories. I was told of a sweet little elderly woman who breezed through it, a big tough construction worker who fell apart, someone told me it was a 'wonderful experience', unfortunately I also knew of someone clean and sober many years who took his own life on it. I was amazed people would even attempt it. Then I met people who switched to daily shots or treated more than once or twice ... I'm still in awe of that, and you. Amazing that people sometimes get stronger the tougher the road. God Bless you.
I'm a 1a kickin some butt although it looks like I may be in for the long haul at the least. You and many are my strength.
Thanks, Don
What Next- Now there's a loaded question. People have been known to stop me in mid sentence to ask if I'm awake. Since long before tx. Actually I do hit here late some nights. Not much of a straight through sleeper. Days ain't long enough for me, and I've been waking every 1 1/2-2 hrs since my drinkin days. That was my MO. Pass out and wake every 2 hrs for another drink. Still can't shake the sleep pattern.
So now(12:15am) you're about 6 hrs post your first shot right.
You slept yet? Listen if you mean hyper by shakey, I've gotten that sometimes from the shot sometime during the 1st 24hrs. One thing I count on everyday, change However I feel, up, down, itchy, B***chee, or like a million bucks(well okay,less riba taxes), there's one thing-in a few hrs or so I'll probably feel different. Either a differnt sx, or normal, or worse. The first 2 weekends were a little more consistent but the body seems to grow outta that. Try and roll with it. Not for the length of tx, or even the day, just a couple of hrs, then roll the other way. How ya feel?
Don
"....kill people with my bare hands at times (especially car salesmen and salesmen at..."
You makes me glad I'm not selling vacuum cleaners door to door anymore.
When I first started talking with people about treatment, I couldn't believe some of the stories. I was told of a sweet little elderly woman who breezed through it, a big tough construction worker who fell apart, someone told me it was a 'wonderful experience', unfortunately I also knew of someone clean and sober many years who took his own life on it. I was amazed people would even attempt it. Then I met people who switched to daily shots or treated more than once or twice ... I'm still in awe of that, and you. Amazing that people sometimes get stronger the tougher the road. God Bless you.
I'm a 1a kickin some butt although it looks like I may be in for the long haul at the least. You and many are my strength.
Thanks, Don
What Next- Now there's a loaded question. People have been known to stop me in mid sentence to ask if I'm awake. Since long before tx. Actually I do hit here late some nights. Not much of a straight through sleeper. Days ain't long enough for me, and I've been waking every 1 1/2-2 hrs since my drinkin days. That was my MO. Pass out and wake every 2 hrs for another drink. Still can't shake the sleep pattern.
So now(12:15am) you're about 6 hrs post your first shot right.
You slept yet? Listen if you mean hyper by shakey, I've gotten that sometimes from the shot sometime during the 1st 24hrs. One thing I count on everyday, change However I feel, up, down, itchy, B***chee, or like a million bucks(well okay,less riba taxes), there's one thing-in a few hrs or so I'll probably feel different. Either a differnt sx, or normal, or worse. The first 2 weekends were a little more consistent but the body seems to grow outta that. Try and roll with it. Not for the length of tx, or even the day, just a couple of hrs, then roll the other way. How ya feel?
Don
Thanks For The Luck I am going to kick this Hep C in the A##. Good luck to you also I was so nuts just waiting to start.
Best of luck starting your tx.There are alot of us starting tx this past week.Mr B.Beagel started last Sunday.Myself Im lagging behind,probably will start next month!Im not as afraid about it now that I,ve learned a thing or two or three(LOL).Magnum looks like your gonna wack this bug this round!
Rick
Rick
Hello,
If I remember right you were starting today with me?? If so did you feel jittery after your first shot and set of pill? I took the shot at 4 pm the pills at 4:30 and I am wide awake and kind of shakey. I and kind of sore but I think I am letting my mind overload right now. I am probably just making myself feel this way??? How are you doing?
If I remember right you were starting today with me?? If so did you feel jittery after your first shot and set of pill? I took the shot at 4 pm the pills at 4:30 and I am wide awake and kind of shakey. I and kind of sore but I think I am letting my mind overload right now. I am probably just making myself feel this way??? How are you doing?
Hey, Magnum, surely big heads are better than little heads. What the hey -- you don't want to look like a pin head. Just start wearing black framed glasses and using a ppocket protector. Everyone will just think you are a geek (or as us old ones would say, an egg head).
Sorry about the shakes and fever. Sounds absolutely awful. Hopefully it is just he adjustment period. You said you'd done the daily infergen before? So what's different this time - higher dose?
frijole
Sorry about the shakes and fever. Sounds absolutely awful. Hopefully it is just he adjustment period. You said you'd done the daily infergen before? So what's different this time - higher dose?
frijole
Last night, two hours after my first injection (4th treatment), I hardly felt anything! Just a very little bit of dizziness and some warm breath. Maybe for me, the Infergen is handled easier by my body. It would be a dream if it was like this throughout the treatment, but logic and experience tells me otherwise. If the first injection is supposed to be worst, I'm on Easy Street at this point, even though I understand that 24mcg of Infergen and 1200mg of Ribavirin is a lot on a daily basis...
Hold everything... Pretty uneventful until four hours later. I started shaking slightly with the chills, then more and more. After three blankets and a heating pad, I was still shaking very badly, teeth chattering for one hour. I suffered for an hour total, then the chills subsided and I slept about 6 hours. I woke up with a "hangover". I have a headache, but not too bad and pressure behind my eyes. I figure the 1st shot is the worse.
One thing I worry about though. Especially during my last treatment at one shot per day for 6 months, my body kept getting smaller. I had very little appetite and lost a good amount of weight. I looked in the mirror and my arms, legs, neck, chest and more were getting little, while my head didn
Hold everything... Pretty uneventful until four hours later. I started shaking slightly with the chills, then more and more. After three blankets and a heating pad, I was still shaking very badly, teeth chattering for one hour. I suffered for an hour total, then the chills subsided and I slept about 6 hours. I woke up with a "hangover". I have a headache, but not too bad and pressure behind my eyes. I figure the 1st shot is the worse.
One thing I worry about though. Especially during my last treatment at one shot per day for 6 months, my body kept getting smaller. I had very little appetite and lost a good amount of weight. I looked in the mirror and my arms, legs, neck, chest and more were getting little, while my head didn
First time on Infergen. Did Peg-Intron twice, Pegasys once. Getting a big load this time. Doctor wants me to go for it and see if I can stand it. I did no antidepressants or Procrit on my former treatments, but he's ready to prescribe something new if I need it.
I remember wanting to kill people with my bare hands at times (especially car salesmen and salesmen at places like Best Buy, Circuit City, etc.). This is not my nature, but when introduced to a strange medication, I obviously don't know what to expect.
I will go as long as I can. 12 weeks is the trial period. If I don't respond, then I wait for Protease Inhibitors or? I'm very determined this time. Even if I can't get out of bed I will not stop. I have friends who can carry me around if necessary.
I hope I can inspire those who want to give up for various reasons. I don't consider anyone a "wimp" on this brutal treatment. This medication can at times, reduce the strongest person to their knees. I can do things well from my knees, so I'm prepared for that. It would take a physical undoing to dissuade me from continuing this treatment. Winning is everything. Losing is shameful. I know, I know, fine for me to say, but remember, after three treatments, your will becomes stronger than before and it's my nature, and hopefully everyone else's here, to continue, in spite of all and any obstacle. Good luck in clearing my friends... I have to shoot up now...
Magnum
I remember wanting to kill people with my bare hands at times (especially car salesmen and salesmen at places like Best Buy, Circuit City, etc.). This is not my nature, but when introduced to a strange medication, I obviously don't know what to expect.
I will go as long as I can. 12 weeks is the trial period. If I don't respond, then I wait for Protease Inhibitors or? I'm very determined this time. Even if I can't get out of bed I will not stop. I have friends who can carry me around if necessary.
I hope I can inspire those who want to give up for various reasons. I don't consider anyone a "wimp" on this brutal treatment. This medication can at times, reduce the strongest person to their knees. I can do things well from my knees, so I'm prepared for that. It would take a physical undoing to dissuade me from continuing this treatment. Winning is everything. Losing is shameful. I know, I know, fine for me to say, but remember, after three treatments, your will becomes stronger than before and it's my nature, and hopefully everyone else's here, to continue, in spite of all and any obstacle. Good luck in clearing my friends... I have to shoot up now...
Magnum
Glad things went pretty well with your first shot. I started Infergen/Riba tx a month ago and although I'm not doing near the dose you are, I have found the sides to be much more tolerable than Peg/Riba. Wonder why we don't do this the first round. I didn't believe my doc when he told me the sx would be less...had to admit to him this week he was right. I'm doing 18 mcg 3 X week...makes me very tired, but other than that I function fairly well. Waiting for 4 week PCR results now...if I haven't had much of a drop, I'm going to insist on daily shots. Hopeful that 3 a week will work for me, labs all look good so far...much better than last round. I'm ready for Snook to drive the SVR bus to Missouri and pick me up! Hope all continues to go well for you. Oh and by the way...I haven't lost any more weight this time...lost 25 #'s first round...Infergen doesn't seem to make all food taste bad. :)
Water is also good to reduce water retention.When the body doesn,t get enough it panics and starts storing it causing retention, but salt can also cause this,so getting adequate water will flush it out reducing that problem.It also is good for our joints and to help muscle tone by giving the muscle the natural ability to contract. Helps prevent constipation and helps digestion. No doubt about it ,water is 1 of Gods miracles!
Rick
Rick
About mid treatment I experienced neuropathy in the form of bilateral drop foot, one side being very severe. The Dr. initially wanted me to stop treatment but I agreed to let them know if it worsened. I was quickly booked in to see a neurologist for EMG. Results.....due to dramatic weight loss from TX and always crossing my legs, I had worn away the peroneal nerve at my knees. 3 weeks of not crossing my legs made a huge improvement by 3 months it was almost gone but I am 2 weeks post TX and still have minor numbness in the foot that was the worst. Neurologist thinks it should still go away but may take another 6 months. We shall see ...good luck with your hands and feet. : )
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