This is my 6th month post 12 month treatment. Geno type 1 and a responder.  I have found the post treatment difficult.  Muscle aches and pains (& joint} I have a big problem with short term memory.  Big time.  The Riv. is the cause and I am told that this will get better as time goes on.  I put wt. on right after the last shot of Peg.   10 to 12 lbs and I am trying to get it off.  It is hard getting up from a chair.  My entire body and ammune system have been attacked.  I got myself off of the anti depressant   Lexapro .  3 months into the program that is when the tears for no reason began.  I had all kinds of side effects... After the 12 months,  I experienced a  big let down... I learned what was never told to me.. that post treatment can be the pits.  I weaned myself off of the Lexapro post treatment... or my Dr. would have thought nothing of keeping me on it forever... That is crazy thinking. I see my Dr. this week for results of testing last week... He will declare me cured if the tests still show Hep C nondetected.  I look forward to that.  I esp. look forward to feeling well. It has been a long 18 months... my poor husband.  I am upset about the forgetfulness.... I would like to hear from others also re post treatment side effects... guess this is the only way we will find out what the scoop is. My very best to you. and all lostpass keep posting and your chin up.

Are you seeing a hepatologist? I wish I had answers for you..truly.  I just got my 12 wk PCR and it seems I am a slow responder..my doc will tell me what to do on Wednesday. Does non responder mean your vl didn't drop at all? I changed dr.s at 6 wks. tx (from GI to Hep) 'cause he didn't seem to have a clue. I just want to remind you that you still have options. If you have not already...find a hepatologist. I have to take everything but a plane to get there but it's worth it. Regarding autimmune hep., I'm sure there must be a test for that. There is something called infergen used by non responders...I don't know enough to advise but if you browse the archives or type the word in search button...it may help. i'm sorry you have been feeling so bad. Don't give up, you need answers and if you stay persistent you will get what you need. I pray this is some benefit..and helps you to realize you are not alone. There is a whole army of us and we are here to help one another through this maize.
Yvonne

I don't know the answers.

I would assume - yes - it can trigger.

My only answer for you would be to find another doctor. Get a Heptologist.

What you are describing is not normal - but it does happen.

I'm genotype 3a had 24 weeks tx pegasys copegus. Female 40 years old. I am a responder - but did the whole 24 weeks.

I dropped platelets down to 40 - But just now --- 2 weeks ago had an almost normal cbc/every blood thing possible and I'm UND.

However --- on the same note - I'm experiencing worse side effects than when I was on TX.

Brain fog - muscle aches - bone aches - exhaustion/fatigue - pains - headaches...

The only thing different is now I have an appetite and I'm not barfing every 20 minutes.

Woohoo.

But if I had your sides - I'd find another doctor. One that was comfortable telling me what they knew.

Sometimes doctors don't have the answers --- they can only monitor and guess. They're humans. But if they didn't have time for me --- I wouldn't have time to pay them.

That's just my take on it.

Good luck --- and regardless if you think it's cold... I'm sorry you're not responding. But --- I do know that the new interferon - albuferon is supposed to have less of a non-responsive rate. Much hope for you. OK?

Meki

seems like everytime i mention (in past) how good i am doing, several days later i am not.  and i usually don't post about the bad days.   and lately i don't post as much nor read as much. but here i am today.

2b 8 wks post 21/24 weeks.  last week i went for 5 mile walk, wrote about it then, i got very sunburn, did not say much about it.  i blistered under the burn, something that has never happenend to me before.  i did not feel well at all, by this previous monday i was feeling very poorly, having cognitive difficulty but going about my days and being more active. saw doctor, asked for longer disability (wrote about this), he said not justified.  that night, in my sleep i could tell there is something wrong, felt worse than did when i was on tx. as many others have written.

next day kind of vasillated some good moments some not, by thursday i was running errands trying to prepare to return to work (looking for new job) obtaining fingerprints etc.. one planned trip to healthfood store as out of probiotics for several weeks.  by time i get there it is about 1:30p i can hardly talk, my sentences are broken, serioius cognitive probems.  definately would describe as dementia.  i ask the clerk to recommend a probiotic to me. explain i am having problems since chemo, but doc's say nothing wrong.  HE, the clerk, reminds me what i have been saying  to others recently, but not following myself, to try apple cider vinegar in my water. so i buy both, take them as i am in my car add the vinegar to my bottle water at a stop light, had 20 min. drive to another errand.  i was not driving well i really should not have been behind the wheel, could hardly form a sentence.  within 30 minutes was feeling better within 3 hours was almost like nothing wrong a little buzzing in the brain but thoughts returned. next day the whole experience is a distant memory. it fixes that quick.  body needs both the probiotic but i credit the vinegar (1 tsp) in water with setting me right by lifting the brain fog.  

i don't know what caused this revisit of tx symptoms.  i am thinking my body was under a lot of stress from the sunburn. i will do my outdoor activity in evening now.

in the past the apple cider has helped me with: diagnosis of GERD, take  w/water no more problems with phlegm rising. helps immediately.

at tx end. i had a lot of mucus in my sinus, throat and esophagus, doc's said that they didn't see anything there even though i was so distressed,  drank the vinegar water it was gone within 2-3 days.

canada
you need a doctor that has treated thousands of patients. they are the only
ones who really know the score, i wouldnt be surprized if good after care (even from a good liver doc) is a problem because they want to devote all their time to new patients. this is a guess on my part. it may take time to get the right doc.

rose
the five mile walk in and of itself had to be hard on you as well.
i overdid my exercise a little on purpose to see what would happen.
i was shaky and weak for two days but ok now. your problems sound rough but you also sound like your on the right track.

I'm so glad I'm not crazy. Well, maybe I'm crazy, but it's comforting to know others have or had this problem. Seriously, I posted to Jim once asking if it was normal to have the mental problems. I noticed that the difficulty with speaking and thinking got worse as the day went on. I sometimes wondered if it were stress or fatigue, or I was losing my mind. Jim didn't really respond, made a joke about my mind being under the couch, or something like that (IF I remember correctly)
Well, for me it's getting better, but still frustrating. And I'm on an AD but feel really down by the end of the day. Just feel like a big loser cause my life gets so out of control and I can't keep up. I've started taking naps in the car again, like I did on tx. My job is an hour and a half away, but please, I shouldn't have to keep pulling over to sleep.
However, on a positive note, I'm blessed to have had a relatively easy tx,( it was shortened to 16 weeks by me the one with no brains,) my family is very understanding, and I really think I'm doing better sooner because I treated less than most.
Hope this improves for others over time.
Good Luck to all
Bug

For what it's worth, my tx experience was 23 shots of PEG, 22 weeks of riba, and it took about 3.5 years to get clear of most of the side effects. There were a lot of ups and downs during that post-tx period including joint pain, insomnia, and hypertension.
Whether you  choose to treat again or not, make sure you find out exactly what's going on with your health. Your doctors being too busy to explain things to you is totally unacceptable, especially with the symptoms you're describing.  

3.5 years.

Aggggg.

That's a scary thought. I thought I would be miraculously cleared at the end of treatment.

But it is good to know others have had some post tx issues and I'm not alone.

Meki

thanks for the encouragement cruel.  i don't think i have opportunity for a different or better hepatologist at this point, and when the docs see me, it seems like all give the the "she really needs to see a psychiatrist" smirk and dismiss me.  really i do feel they do.  you are right they are probably putting all their efforts into getting "new" people into treatment.  they did do such a good job of that, get them in, get them on, montior, but as i stopped 3 weeks early i really feel abandoned by them.  i get no followup with GI nurse, my regular PCP is who i see now. and i am enviouis that bug gets a 12 week post test (and others) and i don't  - why? -- i wonder as i feel further abandoned.  i will wait to see what the 6 mth brings.

Bug -  you are a champion you worked so hard throughout treatment, messed up that you are still so tired.  but like you i start out okay, usually, and well can't even say that, i do however have increasing stamina. its a brain fuzz that comes and goes at unpredicatble times, and the vinegar in water does help quite significantly.  today i watched a program on PBS aired in So. CA, nutrition program where they talked about eating, probiotics, vinegar, and they added another element i don't think much about digestive enzymes.  but i recently got the stuff i need and added something i never took before -- the omega-3, and more flax.. i don't even want to take the stantins anymore to lower cholesteral....

and who was that that said 3.5 years to recover... please, say it isn't so!!! we have to try harder to find what will help us recover,  

so i ask, those who felt better right after a hard tx.  what did you do that may have been different?

thank you for sharing...

I'm really going to look into the vinegar thing. It sounds like a simple cheap cure. And other than the sodium level, doesn't sound like it can hurt, even if if doesn't work.
This is amazing to me to hear so many responses. BTW, I put on sunscreen everyday now, something I've never done before tx.
I've seen my PCP twice since stopping tx, once for the uncontrollable itch, hip pain, and to get a 4 week post pcr. He gave me a steroid shot that cured the itching, and thought the hip/leg pain was maybe another hernia. (I've had two)
My immune system is really not doing it's job and it took me two weeks to recover from a "virus" that turned into bronchitis. I went to an urgent care center on a Saturday for that. Since then I've started drinking dannon "immunity" a 3.3oz bottle of liquid yogurt with the active cultures that restore immunity in your digestive tract. I stopped after I felt better, and Friday started getting a sore throat and cough again. Went and got some more yogurt.
Went back to the PCP last Thurs. to ask for another pcr and to follow up on the hip pain. Now he's referred me to an ortho dr to rule out DJD or bursitis.
My hep clinic has had nothing to do with me since 2nd week in March, at my last visit. They did call me last week to reschedule the June 26 appt as the PA will be out of town. I said don't bother with rescheduling. I only saw her twice on tx and one of those appts was rescheduled also.
I have a lot of energy I think, but it comes in bursts. As far as the brain function, some days I can wake up and realize as I'm trying to get ready for work that it's going to be a bad day. I can barely get out of the house, it takes so long to get ready due to disorganization.
I told my daughter and husband about the sadness I'm experiencing and they were wonderful. They reminded me that I had just gone thru tx and that it would take some time to feel better. Of course they notice the cognitive changes but keep reassuring me it will get better. I've rechecked my spelling on this about 20 times already and fixed the many errors. At least I have the ability to see my errors and fix them most of the time. My typing is worse than the spelling, so a lot is h
just typo errors.
Rose, I hope you start feeling better soon. I think there's hope for all of us. My problems aren't debilitating, just irritating. Ask your PCP for the 12 week PCR. If I'm not clear, no way am I going back on tx yet. I'm sure that to the ones who txed longer, I sound like a whiner. But, I quit because of the same problems I'm talking about now. I fear the toxicity of the meds, but I'm still glad I gave it a try.
Hugs,
Bug

i am 5 weeks post. I never got on any anti-depressants during treatment, however, today i am going to dr to get something to help take edge off. I am constantly irritated, everyday life was NEVER easy but i as a single mother have been able to maintain, even through tx. But lately, I have been a B*t*h!!
On a good note, my hip pain has subsided, but the abilty to put sentences together comes and goes. Some days at work i can sit at my desk and successfully be able to focus on tasks and get much work done, other days its the complete opposite. While still on tx, I looked forward to playing with kids, but this weekend for example i was exhausted, irritated, and snappy with them. I dont know if this has to do with the whole WAITING AND WATCHING gsme, but I am hoping that when they tell me i am SVR this will go away.

I am also glad i gave it a try, Just wish I was more informed about those who are rapid responders stopping tx at week 24.I wish there wre more studies out there that related to people like me. With more exposure out there regarding this disease, there is bound to be more people that are like me.coming out of the woodwork. With everyone's testimonies regarding post tx sx, WHERE ARE THE STUDIES???

Yup, you're not alone, I'm in the same boat with you, but at least you can make decisions tho, such as stopping tx early. No way I could have made a decision like that one. You're my hero, plus you are in the 'Trendy short course group." That's a very exclusive club!!! Cooool girl!!! You got it going on!

well i hope that someone in our group is maintaining information.  we could be our own study.   and look at the numbers, and after tx, svr and lingering side effects. and hopefully whatever resolves the residual sides.

i have been on benzodiazepin serax 15 mg. and was taking one nightly, very seldom 2, lately i skip nights in an effort to fall asleep unassisted, and wonder if my attempts to stop could cause me problems, i know with ADs we need to wean off, is it the same for low-dose benzo? (i prob should know this and tried to look the other day).  beside the cognitive diff. if i can't sleep at night, will make hard for me to get up to work a regular 8 hr. day. i do contract work now and make own schedule, but really hope to be employed through  temp agency specific to my field.

bug - on this PBS program - nutrition called HOPE system books cds and the like,  they said when eating yogurt for beneficial aspects, don't use yogurt with sugar in it, eat the unsweetened.  sugar feeds candidas. but about the vinegar, it should be from health food store, but regular store brand works just as well.- seriously the benefit was very quick.

good day to all

i am 10 months post tx of 45 weeks. i have bad short term memory problems and fatigue blamed on depression.

i did svr but am wondering if it was worth 45 weeks of sides and maybe a lifetime of lingering sides.

i am surprised you have these side after only 12 weeks of tx.
do not let people tell you "well, i have memory problems also, must be old age". bullpeppers.

i advise only those who are in immediate need of tx to rush into this poison with so many good drugs comming up to being aproved. remember the dr. suggesting tx is not the one who has to live with it.

these new drugs may include peg but for a much shorter period and much better chance of svr.

I don't know if this helps but just last week when I saw my heptologist we discussed my stopping ( July12, last shot day) and he said to expect sxs for up to three months afterwards. I'm wondering whether things will be easier for me because of slowly lessening my dosage. Now, I'm only doing 1/5 of the regular pegasys dosage, half of what I was doing for all but the first 5 weeks of tx.
   I've been staying out of the sun except for my feet because I prefer flip-flops. The tops of my feet look like jerky w/o the grease. I'm now trying to remember to slather sunscreen on them.
  There is no way I could walk 5 miles now. Maybe in a few months?
   Take care.           OH

to prevent the greased beef jerky look, you could stick little mai tai umbrellas between your toes to shadow your feet.

i am not looking forward to feeling like this for 3 months.  its like on tx. you never know what side you'll have what day. like my cognitive has been okay, but then i might not be able to sleep, or i just feel fatigue, or like today the "hangover" feeling.

I ended 60 weeks of treatment about 15 months ago.  I am mentally fatigued, physically weak, lethargic, have poor concentration, sometimes to the point of dizziness.  Short term memory problems you betcha.  Joint/bone/muscle pain from sunrise to sunset, though part of that it caused by unrelated progressive spinal curvature.  No appetite.  Eating is a chore so my some of my blood nutrition numbers have become  low.  Especially iron.  Ferritin (iron storage molecules) is around 15 which is  below normal. I will ask for test of  B-vitamins, calcium, potassium,electrolytes,  next time i see the doc. What else to test for?

Because I still have hep c, it is reasonable to think that these lingering sympyoms/sides might be from that. I am inclined to attribute these lasting problems  to  the severity of the treatment drugs or both the drugs and the diisease.  You cain't win fer losing.  My main cocktail was interferon, ribavirin and neupogen.    How long will these aches and pains and brain drains  last?     At the end of my treatment a funky neuropsychiatric memory evaluation (ordered by Social Security as part of my SSDisability Claim.)   revealed quantifiable objective evidence of  abnormal visual memory. I was wickedly fatigued and 40 pound lighter and measureably malnourished by that point in tx.  But litsen up you current tx'ers -  be cheered!  Things have gotten better   For the benefit of you poor folks on tx right now (and  reading all this scary stuff) I should say that my anxiety and darkest depression  began clearing  right away after the last shot.  WHEW!  I could actually witness the unfolding springtime and nature that had held my heart together through so many long cold months.  Did I mention I'm a nature gal?  My appetite came back too right away and my sleep improved. I  have  taken 20 mg ambien eveynight for 5+ years because I have a brain that will not go to sleep on it's own nor with melatonin  or chamomile tea or other OTC preparation.  I have some luck with Xanax and such, but the sleep is always too short.   :-)  

Anyway the point of this blather is to add my two bits to the dialougue about pos-tx symptoms, some of which are neurological because they involve cognitive processes.  Near the end of tx I  found an excellent neurologist in this small univerity town who was willing to order an MRI brain scan for me.  The results were abnormal.  There are multiple areas of stucturally  pathologies that show up in the scan becasue they contain water - meaning dead cells.  They spot are "areas of T2 hyperintensity"  Leukoaraiosis is the technical term.   A second MRI a few weeks ago showed that the white matter areas were still there, but stable - unchanged.  So WHEW for that too!  The pathologist report says the T2 areas are consitent with either demyelination disease (MS)  or ischemic changes suggestive of early onset dementia. Yahoo! The question that lies before me now is were the abnormalities causued by the treatment, the HCV, or some series of unrealted cerebral vascular events (note: the spots are not from strokes or tumors. ) A search of the medical abstracts turns up evidence for all those possibilities.  I have four specialists whose turfs overlap at this point in my personal spacetime medical continuum.  Each has a different opinion of the cause of the brain damage.  None of them encourages me to retereat....  

So my question to you good people?  Has anyone had a MRI brain scan, either before during or after hep c tx?  I would be very interested in the results!  I will share my report with you so we can compare notes.  Brain MRI are spendy and not that easy to get ordered, so if you think you want one you might have to come up with some reason other than fear of toxic effects of hep c treatments.  I think a doc might balk at that.  People who get migraines sometimes get MRI's ordered...  Just a thought...

Cheers all you strugglers, and Ladybug I am wishing you well tonight  ((bug))

Kit
oops heres my addy if anyone want to chat about this.  I have done a fair bit of research in the med abstracts.
kjohyahoo   at  yahoo   dot   com

that is some interesting stuff about the brain MRI.  i did have one years ago MRI not brain or was that other way around... what i mean is, i was given MRI ordered by a neurologist because i was having fainting spells he had ordered to rule out ms and other things.  i was informed it was normal, and that i did have a brain.
rose

Wow, pretty interesting stuff.
"Yahoo!" You're funny, and poetic, you little nature lover. I have a brain that will not go to sleep until it's time to get up. Maybe that accounts for the naps in the car!
You txed a really long time, it really stinks that you didn't clear. I would love to have an MRI but really don't want to know what's on it.
I'm amazed you've gotten so much info, and there's so much out there that we don't know going into tx.
Your story puts my little problems in perspective. You sound twice as smart as me to begin with though so I'm glad my tx was shorter.
Well, I'm going to bed. I quit taking ambien because I was afraid it caused me more cognitive problems. I used to take clonazepam at night to help me relax to sleep, but my hip pain wakes me anyhow. Now I just try reading, or hanging out on the forum at 2 or 3 in the morning. Then I jeopardize my life and others while driving home from work fatigued.
Thanks for the input, I'll contact you soon.
Take care,
Bug

Very interesting post.

I had an MRI in 2000 for migraine related issues, because my occasional migraines/ headaches.
Fortunately, this MRI was completely normal. But in 2000 I was only 29-30 years old.

In 1995-96 I went through 48 weeks of 3 times per week interferon +riba clinical trial.  I didn't respond.  After that I was on Infergen on & off.

Recently I completed 98+ weeks of high dose daily Infergen + ~1200 riba (but by my weight I should be on 1000 mg of riba).  Now I'm 5 weeks post treatment, feel significantly better, people at work complement me that I look fresh and rested, spring is good for me, and such (I did not disclose at work my treatment or decease).

But definitely this time I feel that my attention is greatly diminished, I need to go through creative switch between projects to keep my productivity and to keep my focus.  Never in my life I had problems with focus and concentration.  But seems like my cognitive ability is slowly improving.

My vision is not improving though, so I have to visit a Dr.
Well, anyway, now I'm curios and will ask my primary physician for another MRI.

All the best for everybody!!!

I stopped treatment after 73 weeks in June 2004 and had treated twice before for 52 and 53 weeks respectively but with suboptimal doses. I wrecked my bike in June 2005 and had brain MRIs a few days and weeks later. The only abnormality observed was attributed to the head trauma from the accident. They were worried about cognitive impairment resulting from the head trauma so I assume they studied the images very carefully. I think I am okay cognitively but I haven't taken any tests since 3 months after the accident - they said I was fine then - whatever that means. Mike

I just had a brain MRI. For over a year I get static noise in my right ear everytime there is loud noise such as dog barking, music headphones etc. I was fearful I had an acoustic neuroma because I had read some with the acoustic neuroma also experience this. But then I noticed that if I would have get nervous the side of my head would feel weird. So I mentioned to my husband that it may be something with my blood vessels in my brain becasue its not always noise induced , but seems to appear if I am upset also.

I just received the report. No brain mass, thank God, but it does say "there are a few tiny nonspecific punctate subcortical/perventricular white matter foci which may reflect minimal small vessel disease."

My PCP didn't think too much of it and its probably nothing, but it is one BIG  pain in the neck to have this static in my ear. I guess I should go to a neurologist or something, but really what can they do? But anyhow, I totally believe this is hep c related. No one will listen to me when I say that. BTW this all started BEFORE I started tx.

I'm going away for a while tomorrow so incase you reply, I don't want you to think I am ignoring you.

If you have any advice, let me know. Thanks

Hi My.  Interesting results - somewhat similar to mine.  I'll post a longer response to you in this thread tomorrow.  

btw I got my email addy wrong in my first post.  I am not as cognitively impaired as that post might suggest, honest  :-)  I posted the addy in case anyone wants to mention neuro issues but doesn't wan't to post them to the whole world.  

Kit
kjohyayhoo  at yahoo  dot com