Aa
A
A
A
Close
Hepatitis C Community
13.3k Members
Avatar universal

nonresponder post treatment side effects

I AM A 1B NONRESPONDER. I am having head to toe muscle and joint pain, fatigue ect. all the side effects I had while on treatment.Having to take pain meds and xanax for stress and anxiety to keep up and going each day. I did not have these symptoms pre treatment.Just wondering if any other nonresponders are expeiencing this. I thought that after stoping treatment I would go back to feeling good. all laba are normal excluding vl of course.
13 Responses
Avatar universal
suzie, are you a nonresponder or a relapser? I can't recall what you posted before. If you responded to the meds to the point of testing negative, you are a responder.
I often wonder how much of the pain is the virus, the meds, or the anemia we endure during tx? I wonder also if the pain is worse post tx, with the virus bouncing back or if the pain would be less with the virus gone?  Pain is such a subjective thing, that I don't know how they can measure its severity.  What if someone felt the pain I feel daily and say "this is nothing compare to mine" while others might wonder "how in the world do you cope every day"?  I guess the only thing to measure is  how it affects our daily living now compare to before, and factoring in the aging process.
I had pains pre tx, and was hoping to get rid of them post tx, with the virus clearing.  So, virus is gone, but not the pains, must learn to cope and manage it to a level where I can function, thats all.
Once I get moving, it gets better. staying still for a while, makes for a very hard first step.

child; there are some studies that talk about histological improvement in relapsers, can't remember if it applies to non responders also, though.
Avatar universal
Hi,I'm 4 months post and do not know if I'll achieve SVR or not.However I felt fine the first 6 weeks post TX,then I was hit with the muscle and joint pains,really severe joint pains in hands,feet, wrists and ankles,this has passed now although I still have the muscle pains.I may have overdone it those first 6 weeks and now I'm taking it easy because putting any strain on the joints brings back the pain.All the relevant bloods came back negative so I can only assume it's the after effects of Tx.Best of luck.
119874 tn?1189759429
I'm about 15 weeks post TX (24 weeks on TX).  I took about 3 months to lose the joint pain but it seems to have left the building.  What's left:  incredible insomnia.  On the other hand, I feel a lot better when I'm sleep deprived than I did pre-TX. It's like I have more energy all of the time (unfortunately, even when I'm supposed to be sleeping).



119874 tn?1189759429
Sorry, I forgot to say that I'm not a nonresponder.  I was clear at 12 weeks post.
30678 tn?1217992847
Don't know how long you were on meds, or off meds but sx can last weeks to I've heard months post tx, I personally 1st time around 48wks had sx for about a month.
Avatar universal
Hi, Hope to find you well, I am a nonresponder, I hung in there for 44 weeks as a slow responder,got down to 75,000, then a large jump to 375,000, then i threw in the towel.that was 1O months ago.I was ,as posted seeing a tmc M.D. for prescribed herbs and acupuncture and my husband is a Chiropractor so Iwas feeling pretty good. I am scheduled to start a vx-950 trial probably after the holidays, but boy i am tired of being addicted to pain medications to keep me going. Same with me, worse in the mornings. Then about 6pm I am ready to lye down for the evening.I know so many of ya"ll" can relate after reading your responses.I  so appreciate you taking the time.I have gone back to work with my husband part time, but wiped out by the end of the day.Really enjoy the interaction with his patients, but i think i may be pushing mself  to hard..I guess I may have to realize I may never be the vibrante, full of life, always ready to go type of person I used to be.My husband is 46 and i just turned 53, and I always had more energy than him.I am doing some things for myself though.I had my lips done for my 53rd B.D. no more wrinkles, and I am going to have a face peel to improve my complextion. I recommend men as well as women to do these things. It does make you feel better about yourself. WOW ramble on. Thanks cuteus and all of you.
Avatar universal
not fair! I want a makeover! I only had the blepharoplasty, and am so glad I did. what a difference!
one thing we must try to do, in spite of the pain, or because of it, is an exercise program of some sort. it is a must to keep the muscles toned and the bones strong, especially after menopause. easier said than done because of the discomfort, but I truly believe that things got worse after I stopped my routine, early this yr. Now I have to recover the time and the tone lost. Not doing so, will make things worse, much worse.
I started swimming and Yoga, might go for accupuncture if I can let go of the fear of hep c re infection with the needles.
Keep moving, don't let things deteriorate.
I guess it is harder to deal with these things for someone with high energy pre tx, I never had a lot of energy, not even when younger than 54. Which symptoms can I attribute to hep c leftovers, tx, age and menopause? geesh!, we, women have a lot to contend with when treating in midlife!
I had more libido and better sex life while on tx, now, what can i say...? is it  post tx syndrome or menopause?  unfortunately, it sounds like the latter to me.
86075 tn?1238118691
my acupuncturist opens a new little needle package every time he gets a new needle to poke me with, I imangine they all do....for the uninitiated, it really doesn't hurt, just the slightest little pinch you can barely feel...just started up again after a long time not doing it, and my body does feel a bit better with a bit of increased stamina, but I haven't been back on it for very long, what I remember and am looking forward to is the lessening of anxiety as well...
Avatar universal
Hello Susan,  I treated 19 mos. consecutive. I was a nonresponder. My tx was about 2 years ago. I am still grade 1 stage 1. Geno 1b. I have not posted here for a while either.
My post tx is as bad as you have described. Yhe only pretx symptom was fatigue. I most definitely agree with all you have said, ecspecially the GOD part!!!

Later, Michael
148588 tn?1465782409
I'm scared to ask what having my lips 'done' would involve.
Avatar universal
Hello.  I don't write much anymore, but here it is from me.  I've treated a lot of times, so therefore, lot's of post treatment experiences.  I've never cleared, so each time was the same deal as far as that goes.  So far, with 3 biopsies, no fibrosis improvement. The difference is that when I came off of treatment this last time, 3 mon. ago, I've had a much more difficult time post treatment.  I do exercise.  I walk on the treadmill for 1/2 or more about 6 days a week.  I do stretching exercises, too.  But, I still feel so bad.  I have occasional days where I might get 3 or 4 hours in the middle of the day where I'm able to accomplish something.  This is when I try to schedule my exercise, or going to the grocery store, or something of that nature.  I wake up real early because I just am unable to sleep.  But, I also can't function when I get up that real early time.  Last night for example, I finally drifted off (w/a 1/2 an Ambien), around midnight, woke up at 2 am., went to bathroom, fell back to sleep around 3-3:30 and woke up again around 5 and never went back to sleep. And this is with 1/2 Ambien.  Without anything, NO sleep or if I'm Lucky 1 hr sleep.  Which, to me, feels like I've never slept at all.  My liver enzymes have gone up 3 times since stopping treatment.  I know that I'm not dying, but my Q.O.L. is WAY not good.  But, I still say, 'Blessed be the Name of the Lord'.  Because things could be SO much worse and I do have blessings.  Thanks for listening.     Susan
86075 tn?1238118691
ha, I'll ask it, when you say you had your lips done (and believe me, as far as the actual "lips" for me...youre talking about reduction surgery, he he ) do you mean those vertical wrinkles above the top lip? Or do you mean the actual lips themselves? Just asking...those vertical lines are gettin to me cause they mess up the line of my lipstick, they've just started peepin up...but I would love to have that be my worst problem...I'm for a person doing whatever they want, and if it makes them feel better and you have the dough, go for it...

I'd just stop at those lizard like face lifts like Robert Blake , that poor boy looks stretched outta shape for sure...and that sure isn't his worse problem either...
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473362051
DC
683231 tn?1467326617
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.