Pegasys/Ribavarin Post Tx Side Effects

[zoomom]

Okay, it has been 1 year since ending 48 week tx.  Switching yet again anti-depressants.  Memory problems are so great I have difficulty driving (can't remember if I checked for traffic, keep checking and fear while driving that I forgot to check and will cause an accident).  Still not working, although have made several attempts.

I am just wondering, is anyone following up on us post tx people?  I read about the suicides (one local, 6 months post tx) and they say most if not all had relapses of the virus, or relapses into drug/alcohol abuse prior to suicide.  Maybe the side effects are driving us all to relapses!  Maybe this is a consipiricy to rid the world of those of us who have contracted the disease by "treating" us, thereby "killing" us???

I am not sure how much longer I can fake this functioning before I lose my house, my kid, etc.

zoomom

[zoomom]

My viral load is gone, and I am glad about that, but, these "side effects" are killing me!  I have been trying so very hard to fight them, but I am losing the battle...I think the memory is the worst, I have ways to deal with depression, but not remembering people's faces that I met the day before, not remembering I asked the question when people answer, it is really disturbing!

[wyntre9]

I'm in the middle of the TX battle so I can't answer your questions but I wanted to let you know I'm hearing your pain.

Please take care of yourself.  Perhaps you should contact your Dr. ASAP to discuss the anxiety and try to get a script for a different AD.

While I'm new to TX, I did have terrible anxiety years ago after suffering head injuries in an auto accident.

For years, I felt the same way about driving.  It got so I didn't drive at all and even let my license lapse (I was living in a city at the time).

It did go away, eventually, but it took time.  I wasn't on any ADD's, though.  Perhaps if I had been I would have recovered in a couple of months instead of a couple of years.

Hang in there.  It has to get better.  :)

[mkeela]

I'm so sorry to hear how bad post tx is treating you. It certainly sounds like you have your hands full and are suffering greatly. I wish I could offer you some kind of advice. You said,
"I am not sure how much longer I can fake this functioning before I lose my house, my kid, etc."

The only thing I can say is to stop "faking" it and LET THE DOCTORS AND OTHERS KNOW!!!!! You need to find someone or something that can help you!!!

I'm sorry if there isn't alot of replies to your post, some days are slower than others due to  after shot sx.

I really hope you can find something that can help ease what you are going through. It seems so unfair. God bless you, and good luck to you,
Mkeela.

[Teufelhunden]

I'm in my 34th of 48 week. Genotype 1a. Peg and riba. I hope you've remained SVR and I'm sorry to hear about your depression and memory lapse. I for one would certainly welcome any information on a Peg/Riba post tx people study, in particular depression and memory loss/lapse. Has your Dr. provided any information? Mkeela's right though, don't hesitate. You've been through enough already. Good luck!

[bobbyullc]

i understand well.

i am 8 mo post tx and have to ask my wife if i had lunch? did we get the mail today? she keeps coming back saying she told me something already?

also i have had fatigue that my dr thinks is really mild depression. i did see a link a while back that was trying to get tx's to list their post tx sides and it was a long list.

i get knocked often when i suggest people with low liver damage ,1 or 2, consider waiting for new tx that will be available in 1 or 2 years but i feel this stuff is poison only to be taken as a last resort. many of us can not afford to wait but many can. thanks for sheding some light on possible consequences of rushing tx.

ps. i waited 9 years.

[web52]

zoomom, may i suggest that you speak w/ your md about a referral for neuropsychiatric and/or neuropsychological evaluation to rule out anything else besides continued sx going on & help formulate a more effective treatment plan. memory problems & depression can be symptoms of many conditions, many treatable, although this may very well be related to former tx. the more info you get, the better. best of luck to you.  

[zoomom]

Your support really helped, thanks.

One thing I am curious about:  I am finding it more and more interesting that the side effects are clearly known, yet when tx is stopped, Drs. say they should then be gone...in fact, not until I lost my job and insurance did I find another Dr. who readily supported me in signing temporary disability papers.  My Kaiser Dr. released me for work after 4 weeks, even though I felt the same as during tx!

How can they say the side effects go away?  I have yet to find any studies, reports, etc.  IF I was told the side effects to be expected during tx could be permanent, as much as it is nice to say I'm "cured" (Dr's statment, not mine) I would never had gone for tx.  I thought about tx for 9 years.  Funny, I remember when I was first diagnosed in 1996 a top GI encouraged tx then, even though there was no reason, except he thought that it was a possibility that those (like me) with low numbers and no damage might respond quicker, but his real reason for encouraging it was that he was the head of the local medical group and he thought companies would soon disallow money for tx due to the volume of patients...can you believe he actually told me that?  and yes, my long term memory has not changed ;-)

Anyway, I don't want to complain or wish I did this or that, but I am very concerned the "side effects" are now permanent.

[zoomom]

One more thought:  I have found a lot of data about suicides post tx, and most if not all say patient had a relapse of drug/alchohol use...obviously we can't know, but it could very well be the ongoing side-effects that push one to relapse, then suicide.  It just seems to much of a coincidence. and I have a lifetime of experience with recovery amongst those close to me.  I know that during treatment when I weighed 85 lbs and thought I would die, but I refused to quit, doctor's screwing up my Procrit dose, if it hadn't been for a family member to push me to get a medical marijuana card I really believed I would not be here today.  At least then I could eat.  I remember going days without eating, weeks even.  Gallons of water, a few crackers, that was all.  All I am saying is I think there is something very wrong with the treatment I received, relative to my own body, yet the medical field doesn't care.  I know my friends care, and I so appreciate knowing there are others out there, like me, right now.  It helps...and yes, I go to yet another Phsyciatrist in two 2 days, I desperately need to get off the AD I am on, and try yet another.  I have tried twice with the assistance of my Dr. and the withdrawal is the worse thing I have experienced in my life, don't know how I'll do it...

[sunspot]

I had a neuropsychological evaluation about 5 months post tx. I felt brain dead with a great amount of memory loss. It was a grueling 8 hour test. The test showed no abnormality considering the 11 month poison treatment I went through. Now 14 months after tx, I feel mostly normal. I still have memory lapses at times but I do not know if it is from the tx or my age (56).
I’m so sorry to hear that you are still having problems and I think you should try to see a neuropsychiatry Dr if possible.

[desrt]

I feel there should be greater emphasis placed on pre-tx psych screening - not to mention researching family hx of auto-immune issues, thyroid problems, etc. There is such a wide spectrum of response to these drugs, a person needs this kind of info to make a truly informed decision on whether to tx or not.
Hang in there. It took me 3 years to get rid of most of my long term tx issues, but I now have better QOL than I have for years. It's worth it for most, but it needs to be our decison - not the docs, ins. co., or anyone else.

Knowledge = Power

[WillPower]

Oddly enough, when needing a name for this forum, I used WillPower since "during tx" I needed mind-over-matter, so to speak to survive!  It was tough and post-tx it is still tough, but I get some energy from being post-tx negative at 6 months.  I still have memory problems, the same amount of rash issues and increased depression.  The negativity is going away, but depression still requires WillPower or, aka, "faking it" which is not easy.  

Now that I am negative I am not as aftraid to work out to my exercise heart rate and lift weights.  I am finding that "seems to be" helping. I have been very cautious with exercise because my hep-c doctor said that exercise lowers the immune system.  

I suggest you be careful about taking the typical drugs for remedial reasons.  They are horrible for the body.  Also be careful about putting "too much of-record" about depression because that can turn against you from a documentation stand point.  

For me, will power was the best therapy, aka, "faking it" which is very lonely because nobody understands what you are going through.  This disease has been the most torturous and fearful experience of my life.  The fact is "we/you are in it" and we need to share our innermost thoughts, IMO with an intimate friend for release reasons, but be careful who you share "instability" issues with, is my "honest" advice.  Going for depression drugs is a crutch and will end up taking you down more than the torture of "faking it".  

I truly think that this forum needs a "post hcv tx" group that documents all clinical side effects we all experience after tx as well as research we find on the net. This would be very heuristic.

The best in y/our struggles.  WillPower

[Krisso]

Wait a minute - I was just reading along here and came to WillPower's comments about exercise.  I've never heard that exercise lowers your immune system!  Is that really true?  I feel subhuman until I sweat every day!  Part of my plan for successfully making it through Tx is regular exercise of some sort.  And my memory is already pretty crummy.  I'm not pleased about the idea of it getting dramatically worse!  :-(

By the way, after nearly a year of delays, I will be having my first injection tomorrow.  I am 1a, stage 3, 50 years old.

[Kalio1]

Congrats on starting your treatment!
I think you are smart to try to maintain regular exercise any time in life and during treatment.
Prolonged strenuous exercise can decrease your immune system's power and can cause increased liver enzymes. It makes sense that if you are pushing your body very hard physically for too long you are putting stress on your whole system. Like everything, excercise offers it's maximum benefit when you don't do too little or too much.

[zoomom]

Wish I'd read your post before I let it all out to the shrink!  Oh well...At least he told me he has several patients that went 1.5 years post tx with same symptoms as during tx...saying most have 6 months of trouble, but I guess we are coming out of the "woodwork" now.  Going to try a new antidepressant, which has much less (he says) side affects when going off, which is my big concern with the terrible antidepressant I am currently on.  Bad day today, lost my cell phone and had a flat tire...my cell phone is my life now, I check in and my daughter calls me to tell me where I am supposed to be going after trying to "work".  Well, it is just sympathy work, a friend is paying me to answer phones, take messages, run errands.  I am terrible at it, but he really needs the help, so I have a little income...don't know how I will make it another 6 months without a "real" job.  I keep applying, can't stand not to be working, but if anyone actually hired me I doubt I could keep a "real" job with the state I am in.  I have to say, if I had been told that in addition to the 48 weeks of tx, I would have another 1.5 years of symptoms,

I would have declined treatment, really.  

And, since this is kind of "new", who knows, in another 6 months they may say it is permanent!  The shrink did hint that my mind may never return to pre tx health, and since I am 50, they can blame problems on age, hormones, etc!  So, anyone thinking about tx, could you live with an additional unknown length of time feeling this terrible?  I know, it affects everyone differently, but it is something to think about.  

[zoomom]

Oh, forgot to say, thank you for sharing your experience, it does help knowing.  As for sharing, I went through tx alone, with just my 13 yr old daughter.  Refused to let anyone in the house, didn't answer my phone...it has gotten to the point of being afraid of losing my daughter, our house is filthy, I sleep with about a years worth of laundry on my bed...I haven't been able to share my "mental state" with anyone.  I guess this is as good a release as any.  I still 'fake it" pretty good, but it is getting harder each day, and after a bad day today I was in quite a state when I saw the shrink...oh well, this is life.  The one creature that has helped me the most is my horse, who has perpetual pain in his feet.  I began riding him lightly during HIS pain free days when I was just finishing tx, he was SO WONDERFUL, he took good care to help me gain strength and balance back, I hope he has some more good days, I REALLY need to spend a day with just him...something to look forward to, I just remembered!

[WillPower]

I got terribly tired of "faking it", but I found that too much venting, for me, maybe not others, just makes the state of mind worse.  I find that this forum is the best mind distracter.  I still wake up at night with negative thinking.  The first place I go is here, with people I respect.  (I am so sorry Rev is gone.  He told the truth as he sees it.) In half an hour, I turn positive about life, people and quickly become sleepable.  Sometimes, I make a comment if it seems of value, which always makes me feel good: I have gained so much from this site I like to give back.  I doubt I will ever leave.  

See?  Still bad focus and my usual post-tx rambling.

Regarding depression drugs:  I have found, without exception, they all have side effects, which to me is proof that they will contribute to further sickness with only temporary benefit.  Soon, the hooked, IMO, will need a drug for those side effects.  The best "lift" I have found, post-tx is limited coffee and 10 ounces of raw vegetable juice.  Stay away from too much sugar, it is a depressant. However, the depression drugs are of very much value to pull you through this phase.  If you keep thinking about "wanting to give them up" pretty soon they will no longer be needed, I think.  

Post-tx exercise is very beneficial if you are negative for 6 months, but there are no rules on this.  I just was afraid of the dangers of lowering the immune system until this point (I am now 7 mo post-tx, neg).  Of course, mild exercise is very beneficial during tx, I think.  Both my hcv docs agree fully on this issue.  

I found renting movies like Borat helped my attitude.  Al

[fielyverdadera]

I need help i am on my 9week of treatment feel like i am going to die with my side effects cant eat am very week cant walk up the stair my husband thinks it just me my friends tell me just suck it up and keep going my body tells me you are not going to make it someone help.  I cant sleep cant walk harding have no energy am taking now not only those med for treatment put iron pills for low hemoglobin, and stomach pills for the sickness in my stomach

[Icefire57]

Wow...this is the best forum I've come across to date..I'm now post tx 17 days and Keep asking myself ...WHY do they offer all these classes & different doctor check-ups, make sure you can handle the tx but they DO NOT offer U a darn thing for AFTER treatment ?
I'm NOT handling this well at all....It almost seems as though my symptoms are worse now that the tx is over......The w/drawals were really weird to go through & still am......The thought of going through a year of ...(**** I can't think of the right word) and I've always thought of myself to be intelligent...Oh yea ..
"recovery" makes me wonder why I didn't try other avenues first.....I have sooooooo many questions....
Some sound vain but I don't feel that way....
How long into POST tx before I can stop asking the same questions over & over 'till I get snapped at 'cause I ask it over & over, sometimes just minutes later...?
& how long really before  I can "wash this gray right out of my hair.." ?  & the constant pain that I feel more of (post tx) & the "faking"  too funny, I'm so tired of that too...Or looking in the mirror & 'seeing' the thinning hair, sunk in eyes w/dark saggy circles I never had & on & on & on.....the 'Episode" (I call them) when you feel like you're going to SNAP at the sound of a voice & IF you had a pistol you'd probably use it (at that moment)   Well it's taken me 28 minutes to write something that normally would have taken me 3-4 min.
I feel for everyone going through this horrible tx...Higher power to ya all

[meki]

IceFire -- Nice to meet you - And I wanted to let you know that this post is more than a year old.

If you're still feeling horrid after TX --- Get YE to a doctor that can work with you.

Start off with your regular doctor - ask for testing on AutoImmune Disorders.

Get your Rheumatoid Factor checked.

Then go see a Rheumatologist (a doctor that deals with arthritis).

Now --- about the "SNAPPING" part --- Yeah?

Get over it.

You have one mind - you've been through a lot - now deal with it.

Go see a psychologist. If you're having emotional issues --- You might just need to speak it out --- or you might need medication.

You might just need TIME for yourself.

Now --- about asking things again and again --- and feeling blank.

USE YOUR TOOLS AVAILABLE...

Get yourself a Daytimer --- or a notebook - write down your questions and answers....

Or the things you want to know.

ABOUT your hair --- See a beautician that deals with Chemo patients... You may have to call around - but some of them have some decent ideas, vitamins - or shampoos that can help.

Now - about the eyes..... It may be just age - it may just be that you're tired now... It may be your platelets - it may be that you need some extra vitamins -- you may need a lotion --- ASK THE DOC...

About it taking you time to write things - yep - sounds like you might have Rheumatoid Arthritis or Fibro....

Check into it.

Much luck to you.

BUT BE PROACTIVE ON YOUR OWN HEALTH CARE.

You can do it --- I'm sitting here with pom poms --- Cheering you on.

Start running NOW!

Meki

[senoritabella]

i have been on treatment for a year now. no one toll me that i could never work again. it took a toll on my body. all my old injuries i had in the past came back. im on long term medication for my nerves, sleeping disorder, and the pain that i still have... yes you have treated the hep c. but you have damage other parts of my body and i can never work again. was it worth it?

michele an ex postal worker that loved her job

[Paula20018]

Hi to another fellow treatment taker.  I too have had some issues wondering if it were side effects from injections & pills.  But my other issues involved mostly abdomen/stomach severe cramping & hip to toe severe cramping.  Ya know, I didn't realize it until I read your page, that my memory does a number on me too.  Anyways, I write things down a lot and try to keep very busy.  I think everyone and anyone who goes into this program is brave, not knowing exactly what these drugs will do to you later.  It's like being a teenager wanting to experiment with drugs, it's far worse than that.
I completed my 48 week program 1 year ago April 14th, 2009.
You mentioned a conspiracy -- just think about the many of us who donated blood BEFORE they tested!  That's how so many more people were infected with HEPC.  I was a blood contributer, until I received a letter stating I could no longer give blood.  Well, that's exactly how I got HEPC in the first place!  I had emergency surgery, lost too much blood, almost died and required a blood transfusion.  I feel guilty, but I shouldn't because I didn't know my blood donation was tainted until it was too late.
Regarding suicides -- that is not an option with me.  I refuse to allow myself to give in to the devil and leave by way of suicide.  Yes, sometime I get a little down, but I find something else to occupy my mind to keep it from going there.  I think about the pain for my children and grandchildren, family and friends who will miss me and I think about myself not allowing myself to continue LIVING for my family, instead of dying.  
There is something special in each of us, some of us find it sooner than others and some never find it.  But I truly believe that each of us has a special quality in us and it was given to us for us to do somethingwith, not to give up and destroy it.  It could be writing, showing compassion to the elderly, being a great grandparent, the best wife, the bst friend ever, or whatever we find in ourselves.
It takes courage and will power to proceed with life, when all looks so gloomy.  It takes courage and will power to deal with emotional problems, health issues, life & death situations, or sometimes just every day living.  I haven't had it easy at all dealing with a biological "mommy dearest" all my life and having to deal with family members making comments that maybe I will turn out like her because I'm from her blood.  I can assure I am NOTHING like her, so says other family members, friends and my husband.  It was suggested once many years ago that I consult with a psychiatrist.  I went for the consultation like suggested.  I listened to everything he said.  First he began telling me that I blamed my biological mom for everything bad that happened to me.  Excuse me, but how could it be my fault when I am 4 yrs old & she is using a steel belt & bare switch to rip into my legs and face?  So I let him talk.  He also said that maybe I shouldn't associate myself or back away from my relationship with her, to heal my mind first.  That part made more sense to me.  It worked!  When I grew up and got married, she wasn't in my life and every time I allowed her back in, my emotional state would suffer severely.  My moods changed and I wasn't a pleasant person to my children or family.  Ding ****!  The other thing he mentioned was to forgive myself and to forgive her.  I did both.  I forgave myself for having bad thoughts about her and I realized that she will have to pay for the way she treted me some day.  That is not for me to judge.
I have lived many happy years without her in my life.  Even when I turned past 40 and tried to make amends several times, she pushes me away.  So now she has made her choice.  She didn't just push me away -- she pushed my three beautiful and talented children away.  She hasn's seen my youngest (a daughter) since she was 10 1/2 and my daughter is now 35!  She hasn't seen my grandchildren either!  I feel sorry for her that she deprived herself of people in my life.
So what I'm getting at is -- don't allow yourself to get so depressed you can't get out of that hole.  Some people require medicationa dn some have the will power and courage to change things themselves without meds or a balance of meds and attitude!
What did our ancestors do many years ago without all these pills to take?  They did their chores, found things to keep their minds and hands busy and just kept on trucking!  I'm sure they had they share of suicide, but nothing like we have today.  Yes, thanks to medical facilities who create more drugs for people to take.  Now I'm not talking about the meds who cure cancer or any other type of disease.  But to this day, my personal opinion is, if I had those meds 30-40 yrs ago (I am 57 yrs old), I believe I would have been more likely to end it all way back then.
Remember, it takes courage and will power.  Anyone who has suicidal thoughts SHOULD consult a doctor, but I believe should also try from within to helpo themselves.  Forgetting things and getting mixed is part of life with so many things on our plate.  And it could be part of this treatment program.  Will we ever know?  Take care and I will pray for you.

[Paula20018]

Hi, I can relate to your post symptoms & health issues because I've been experiencing some too.  But I knew a family member (not close) who died of liver cancer and it was very painful.  He was on the liver transplant list, but it wasn't soon enough.  I chose to take the treatment because I felt it was the better of the two evils.  You have to be strong through the rest of your health issues.  Do research and try do help yourself, if not mentally, then physically, or visa versa.  Hang in there!  You are not alone.  I have very good mornings sometimes, and sometimes mornings are very bad.  I rearrange my chore schedule to accommodate my body.  Sometimes I can't do much of nothing!  My husband is very understanding.  On my good days, I'll visit my sister & help her for now because she is experiencing some health issues (non-related) to any of mine.  I crack jokes with her saying the hospital should assign us a room together so we can catch up on family news, get written projects done, plans made for when we feel better, etc!
We don't sit around feeling sorry for ourselves, but we do talk it all out.  Once that is done, we try to accomplish other projects that either we can do alone or together.  Take care.  Try crafts, writing, journals, etc these may help a little.  Look around your house & see if you'd like to make any changes, then on a good day either ask for help or attempt a little at a time.

[benmachree]

if it is this bad why would doctors still recomment it to people.  I dont get it.  if it is so bad why is it still legal??

[jami5]

I am a little over 2 years post peg-intron/riba. and my 1a has been cleared since the 6th week into the tx even though my VL was VERY high at the start.  
I haven't gotten my sense of taste back, don't believe I ever will, but I can smell the food and remember how it tastes. My short-term memory is still unreliable-I am scared to work because I can't 'process' things like before. And my fingertips still feel slightly numb. But the fatigue is devastating!  After going to the max dose of ritalin, I am now on dexamphetamine to function. Depression has nothing to do with it.  It feels like there is some 'element' missing in my body that is required for energy.  Tests of every kind have been done-all normal!  I can say with confidence that the treatment is the culprit of all the above.  So can my doc. All said, for me personally its a fair trade off as I don't have to fear infecting anyone or the problems that the virus causes.  Is anyone else having similar problems?