Psychdoc/20/20 Hindsight

[friscosue13]

Psychdoc posted a few days ago that the decision to tx might be different today after treating.  I'm not singling out folks, but would you mind clarifying, please?  Does anyone else concur?  It's not my intention to rain on anyone's parade, but every instinct I have is telling me to not tx.   I'll be seeing my dr. this Friday, am would like to decide once and for all -- at least for this year, anyway.  Thank you.

[NYgirl]

I have not finished tx but am VERY glad I am treating. My enzymes were in the 200s and now are in the 20s - and i'm not even talking about the virus.  My liver is getting BETTER and that could buy me YEARS and that to me is worth it even if I do not achieve SVR for some reason I will continue to TRY but I also realize my long term health is improving as I am killing the cooties inside.

If, worse case scenario, all the tx does is buy me a healthier liver and a few more years of LIFE then I consider it WORTH IT.

I will try every tx until i beat this thing. The sx are a pain but the alternative is not worth it to me.

[jmjm530]

My decision to treat would have been the same since I was told prior to treatment I had significant liver damage -- so I really couldn't find too many other options that made sense.

From this and your previous posts, it's clear you're still in a quandry whether or not to treat. In general, as a genotype 2b, you have about an 80% chance of being cured with 24-weeks of treatment and some preliminary studies suggest you could even treat for less time if you're what is now being called a "Super Responder". So the argument for treating most genotype 2's and 3's is a good one.

Yet, you have a number of issues, including work issues from your previous posts and then there's your "instict" which can't be taken lately. You really have to examine why your instinct is telling you not to treat.

You also mentioned you were against a biopsy. And while many doctors treat geno 2's and 3's without biopsy, it might make more sense in your case since you're so on the fence. Certainly, if you knew you were a stage 3 or 4, my guess is you would want to treat now. So re-consider the biopsy. It's not without risk, but then there're also risks with Hepatitis C. The other thought is to take LabCorp's Fibrosure test which is sort of like a virtual biopsy. Better yet, would be a Fibroscan if you live near Boston or Miami.

I know you want to put some kind of closure on your decision soon, but sometimes you have to step back and take a little more time.

-- Jim

[mistybean]

I had no instint to treat or not treat.  I just called my doc one day and picked up the meds the next.  I finally figured that thier is no good time to treat.  I will tell you if I had to do it again.. I would of figured out some way to go on reduced work schedule.  That caused the most part for me.  Plus my husband started to settle down.  Things are getting better for me now as on Friday I hit shot 19.  My doc wants to take me off at shot 20.  Of course I am going to order a new box of ( my last box) of drugs today so I can at the very least try to continue to shot 22.  My instint that shot 22 will do the job for this 2a genotype. You mentioned you are a 2 genotype.  We clear very, very fast with this drugs.  The changes are high of a SVR.

[cuteus]

I have no regrets about treating when I did.  I did not want to carry this virus with me and worry each time I bled. Age is a big factor for me. My "instinct" told me not to tx, but I know it was actually FEAR speaking.
I might not have done it so soon after dx if I was in my 20's or 30's unless having children came to play.
If I had a 80% chance of clearing I would have jumped into it even faster.

[DoubleDose]

Even though I often vent about the variety of post-tx issues that I have experienced, I would do my 18 months of high dose Peg-Intron/Riba over again in a heartbeat to get rid of the virus.  My liver was heading south, and my overall feeling of well-being was very poor.  Fatigue had been increasing over the years, and the virus was slowly taking over my life, as well as my liver.

Sure, tx is not easy, AND there are risks of residual physical problems after tx (which usually resolve over time), but the alternative is to stand idly by and watch your liver be consumed slowly by the virus, and to experience the slow and constant demise of your general health, both physical and psychological.

Even though I suffer from some residual problems, I feel IMMENSLY better than I did during the few years before my second and successful tx.  I believe I am slowly overcoming many of the post-tx issues, and will continue to gradually recover.  Remember, I did LOTS of interferon, a total of 33 months of mostly very high dose, or daily dose interferon, coupled with ribavirin which caused severe anemia.  Most tx'ers today will not have to endure nearly as much punishment, using current, targeted tx strategies.

With HCV, waiting is generally a losing plan.  Most people can now successfully clear the virus, and begin a virus-free life.
It is easy to find reasons not to tx, but rationalizing your way around the work necessary to get rid of the virus will only sink you deeper into the HCV quicksand.  With this virus, liver damage only gets worse month by month, year by year.  Granted, it moves at different speeds in different people, but it is all headed to the same destination.......liver failure...death.

My advice, (and I took it myself) is to takle the disease head-on, right now,  and to find an excellent HCV doctor with a long track record of success treating HCV.  You may find good ones who are specialists in hepatology, GI treatment, Infectious Disease, etc., but just make sure to find a GOOD one.  Your tx experience will be smoother, more efficient, and probably more successful.

Best wishes!!!

DoubleDose

[Tyree2005]

Hi,
I have been reading an getting a lot of advise from this site as well as others and the decisions of treatment well  it was not a will I or will I not take treatment   I know is something I must do to live and see my grandchildren grow up.  I do understand my quality of life my not be the same while under going my treatment but with the support of my family and new found friends I know I will make it.  I will be starting my first treatment  sometime after thanksgiving for 48 weeks. I also am very nerves and worried about all the side effects but on the other hand very excited about being cured.  Hang in there and hopefully you will make the right decisions.
Peace

[omyst]

Hi I started treatment 24 weeks ago and was very reluctant to put the toxic tx drugs in my body. Before tx I was a vegetarian and ate only organic food. Now on tx I do eat turkey and chicken because I have lost a bit of weight and need the protein

I have probably had the virus for 27 years now

The reason I decided to treat was that the disease progression seemed to ramp up in my case. In the 7 years I had known I had the virus my ALT was normal or near normal ( 30 - 40 ), then in the last 6 months before tx it went to 250. My biopsy showed that in those 7 years I went from stage 0, grade 1 to stage 2 grade 3.

I can't tell you what to do, but whatever you decide keep a close eye on the virus, disease progression does not seem to be a linear process.

I am genotype 4 (48 week protocol), cleared the virus at week 4, pre-tx vl was 1.1 million, my last ALT was 21. I will get the results of week 24 viral load today.

[NYgirl]

Never think that you are the first person to be nervous about tx and sx.  We ALL were!

The hardest part is the waiting....the anxiety of what is it going to be like for ME has been difficult for EVERYONE!

I am glad you are going to take a proactive stand with this disease.  I know it makes it much easier a decision for ME that I want to see my children have children and play with my grandchildren someday too!  :)

Anything that we can use to fight this fight - any excuse to go for it that we can use keeps us from ending up with liver failure and death is good!  I'd rather fight this fight NOW than that fight later.

I am sure you will be fine and remember we will be here for you!

[lackalustre]

i am 2 b   and really dragged my feet into treatment. in fact i was diagnosed in 98 and didnt do tx. till 03!!  i did not get a biopsy either.  tho i just had a fibrosure.   i tried every "natrual" thing there was.  but quality of life continued to deteriorate.
   i took full dose pegasys/copegus which is not weight based. i am a small person so i took the same dose a 400 lb man would take!  anyway i cleared the virus so it was worth it.  like someone above said. there is never a good time to start .  i finanally took the plunge and was scared.  it was the hardest thing ive ever done but i am doing so much better than before and dont regret doing it !!!

[friscosue13]

I'm typing through tears right now -- not out of self-pity, but because I'm sincerely touched by your responses; so many and so quickly.  Among other things in my lifetime, I've chased down a mugger, and got my stuff back ... and now I'm scared of some little meds!  Thank you all for your support.   The physician's assistant assigned to me just called to ask my weight before she orders my meds and to remind me of my appointment tomorrow.  Remember the line about "the kindness of strangers"?  You are all some pretty wonderful people.  Thank you.

[crushed]

isn't much i can add, you've already gotten some very good points of view and information. the decision to treat is difficult because it's pretty much the lesser of two evils. being type 2 gives you a much better shot of quickly achiving SVR. heck if i was a 2 i'd be done this week and dancing in the streets.

[tonerman]

Can someone help me out what is
TX and SX

Thank you Gary

[friole]

It is such a hard decision.  I don't regret making it myself.  I am at 18/48 and realize it will be a long haul. My decisions to treat were based on age (57) insurance (mine is good) and the fact that I have known for many years (13) that I have had hep C and have not done anything.  I could have waited since my liver damage is not that great (grade 1, stage 1) but the time in my life seemed to be right now so I took the plunge.

Will you starat tomorrow?

[mistybean]

You know if you are scared.  You should wait.  Being on this tx is hard and your mind needs to be ready to take this stuff.  Best of luck to you.

[mikesimon]

You've gotten some really great advice and I can't add much, if anything to the discussion. I never questioned whether to do TX. I had a liver transplant in June 2000 and the hep came roaring back. I was just thrilled that there was something I could take because I was scared to death and pretty sick as well. Yea, I'd do it again knowing what I know now. There are certainly some promising drugs on the horizon and if I had the time to wait I might do that. But you really should have a biopsy so you'll know how much time, if any, you have. Once you see the biopsy results your decision should be a lot easier to make. I wish you the very best. Mike

[FlGuy]

I admire the way you are going about your decision making.

[cuteus]

I don't know how to link, but this might be of interest to you, since, like me, you had detectable hcv at wk 12:

"Detection of minimal residual hepatitis C viremia at treatment week 12 is associated with a high probability of relapse"

Is from the conference. They did not offer a suggestion to ensure SVR, like tx extension.

[FlGuy]

For added input... see the article 'miked' posted in the thread "Hope 20 Weeks is Enough" - Wall Street Journal article on future meds.  Although others have posted detailed information about the meds in the article in the past several days - the article is an easy and quick read for an overview.  Read it soon, it's copywrited and probably won't last in the thread long..

[vegas777]

I gave my bucks worth of advice down below in another thread...I do not use conventional treatments for HCV, I use vitamins, herbs, diet and exercise...

Just to balance out this thread *smile*

*dippers*

[cuteus]

please refer to the thread: If you can't find your doctor this week... a few scrolls down and check the comment by willing, he linked us to the abstrats site for the conference. Beware that there is a LOT to read on HCV, I spent hrs just adding stuff to "my itinerary" and just now will go to read more. there is one on Procrit's cost effectiveness in relation to hcv, sounde negative, i am going to read it now.
gl

[cougareyes]

If you have no possible HCV symptoms, no liver dysfunction, and a good biopsy result; do not treat with these drugs. I'm in week 20/48 and believe me alot of people who are treating and have treated live in denial.
For most, any hepatic symptoms or liver damage that occurs through HCV takes many years; usually more than 20 and that's with adding alcohol and the likes. Interferon and ribravin can damage your body(other organs besides your liver) and mind much more during the coarse of tx.
My quality of life pre-tx was bad with liver dysfunction, I had to take a gamble on tx to give my liver a chance to recover. Other hepatic symptoms, possibly; but nothing worth the risk of these drugs.
It's not because of the severity of the possible sx, it's the possible long term damage to your mind and other organs. Damage that may not even surface for years, at least liver damage and inflammation can be monitored; and inflammation somewhat controlled. Although I do believe an active virus in your blood is probably interferring with more than just your liver, the other possible manifestations of HCV have not been proven. Good Luck on your decision, I hope you have the luxury to wait.     Peace

[jmjm530]

I know you're not posting much these days so thanks for taking the time with your heartfelt post. It reflects my sentiments as well. Hope the rest of treatment is a little kinder. BTW "Everyone Hates Chris" is on TV tonight. It's a funny and warm half hour.

-- Jim

[psychdoc]

Before treatment I was tired and had to take a nap everyday. Since treatment I am still tired and try to nap everyday even though it is not always possible. I had no insurance when I was first diagnosed so did not have a biopsy. At the end of treatment I had gallstone pancreatitis and had surgery for gallbladder removal and convinced my doctor to do a biopsy at that time. I had no liver damage! I probably would have died of something else before I died of liver problems. I get discouraged because I always seem to have some new physical problem since treatment. I have hypertension now. I am pre-diabetic. I have high cholesteral. Last week I was in the hospital for gastritis. If I had known that I had no liver damage then I might not have treated but then again I didn't like the thought of something foreign trying to destroy my body. On the good days I would do it again. Hope that is not too confusing. As I said I am getting older and I did not want to wait until some physical condition prevented treatment.
Good luck to you,
Barb

[johnisme]

Heres hoping the sx's get better for you both, I have to say i agree totally with what you say. For the life of me i just don't understand how some people are so eagar to put this rat poison in their body's or want to see other people take it. But then i could never understand how jim jones got all those people to drink the kool-aid....Oh well


    take care, John

[new-sojourn]

I can look back on the yrs when my kids were growing up and I didn't know I had hep c.  and that makes me cry....all those too tired moments, too sharp moments, fuzzy moments, over emotional moments...

I wonder what my sex drive would have been, my relationships and overall health if I hadn't had the virus.  I wonder if I would have healed faster from ski accidents, traveled w/less 'jet lag' and 'colds' and gastrol upsets...

I didn't live less b/c of the hep c slowly eating me alive, b/I sure could have lived better...and saved a bundle on fine wines, imported vodkas and sweet, sweet cocaine.

It's not worth a lifetime of what ifs for a few wks of inconvience.

If you have the insurance, can lighten your work load and social calander-incl relatives, esp close relatives-then now is the best time to tx.

[Forseegood]

I just wanted to say thanks to you guys for giving your take on treating with low to no liver damage, unlike Fox News (sorry for the editorializing) I think members of these boards should do there upmost in presenting "fair and balanced" viewpoints on all things hep c related. I'm not against anybody treating, 0 damage or not, I just think we should all know as much as possible before deciding on anything that important. Just my opinion.

Jim: I promise I won't funny up this thread, but I don't think I ever complimented you on that quip you made to the guy with the "jaundiced or not" eye pics?...I don't know but I think I'm in love??... I thought I was going to laugh my a$$ off my desk chair!

okay, I'll stop. promise.

[jmjm530]

Forsee said prev: "...I don't think I ever complimented you on that quip you made to the guy with the "jaundiced or not" eye pics?...I don't know but I think I'm in love??... I thought I was going to laugh my a$$ off my desk chair!"

============================

You noticed he never came back. Oh well, such nice eyes :)

[jmjm530]

Thanks again buddy. When you're not making tons of sense, you really can crack me up.

-- Jim

[johnisme]

You noticed he never came back. Oh well, such nice eyes :)

I think you lost out jimbo. I saw those same eyes posted on another site...

[DoubleDose]

Interesting, in that after tx I am also developing 'pre-diabetes' patterns, and am doing further testing to determine extent, and I am now borderline hypertensive, (never was before tx), and have high cholestorol and triglycerides!  I am not sure all the above are due to my 10 to 15 pound weight gain over tx weight, and 5 pounds or so, over pre-tx weights.

Interferon seems to be one of the 'gifts that keeps on giving....'

My thyroid TSH values are SLOWLY creeping up again, after almost two years on synthroid, after finishing tx.  Maybe the thyroid continues to lose function after tx, and after even the SVR.

I wonder how many others are getting this post-tx basket of goodies.  Miles post above seems to indicate similar, though worse problems!

DoubleDose

[terriri]

I finished treatment a few years ago (successfully) I was 1a. Before I finally discovered what was wrong with me I found that some of the things I really enjoyed, like working in my front garden for 20 minutes left me exhausted beyond belief. I had to arrange my days around a planned naptime. Whether or not I got a nap determined if I could go out with my husband, shopping with my kids or getting a full time job. I was also prone to pneumonia, colds, flu or allergies and my joints often hurt. When I found out I had hep C, I was scared and relieved at the same time. I was relieved to have some answers to my health problems but terrified to know I was contagious. I worried if I had given hep C to my family. I had a neighbor at the time that was talking to me about natural remedies, which left me briefly confused on what to do, TX or no. As soon as I found out there where no natural cures I couldn’t wait to treat with the meds. I didn’t want to walk around worried all the time that although slim I could infect someone else. I just wanted the hep off me. TX was not easy and the long wait and testing to go on the drugs nearly drove me mad. The only thing that helped my sanity during the hard times was walks and very short matt Pilates routines. I also had a hard time off and on post TX for nearly a year and a half. Oh, I forgot to mention that during the testing phase I found out that I also had rheumatoid arthritis, which certainly added to my problems. I have come a long way since, I exercise daily and at nearly 46, I am in the best shape of my life. I work in a gym and enjoy helping others with injuries and illnesses with special exercises to help them mentally and physically. Everyone in my family tested negative, yippee!  Life goes on and I can make plans without hepatitis c hanging over my head. It was all worth it for me because I have my life back.

[beamishboy]

this site rocks!!! thk yu all.........

[Aubbie]

The advice you are given and opinions ,you cant beat this bunch!!!  I remember waiting on medicine approval and then waiting to receive tx. I had so many neg thoughts and when I read about side effects I drove my ownself crazy. The anxiety of thinking of all of it, IT WAS HORRIBLE THE WAITING!! I would get on this site and listen to all and this bunch has really helped give support and knowledge, makes you feel in control of your disease. BUTTTTTTTTTTTT when my md said  this is treatable, ok I said Iwant to do what I need to do. but because I was a little depressed, they sent me to therapy. But I jumped to do what I could, SEE this virus  can do more damage and the tx can stop that from happening, cant cure what damage is done, but lets stop further damage . I liked the statement someone made,we all are nervous when we start, I actually thought I would get all the sx that are written on tx info pamplet. I agree with some , take your time and if your  afraid talk it out because , I was there and just lke you. I had to rest alot and bone aches alot but Iwas neg at week12 and going on till 48, I am type 1 knondell score 12 and am still learning on that, now its shot 21 today. I want to wish you luck Psychdoc, and remember we alllll felt like you. POSITIVE is a word associated wit this treatment!Aubbie

[friole]

Although I looked through the titles from the conference, I have only read a couple of the articles.  I would be most interested in the one you refer to which discussed detectable limits at week 12 and possible relapse.  Could you give the topic title, perhaps?

I am sort of in a prediciment about that.  As you know I requested the super sensitive test at week 12 and it showed me at 40 IU/mL.  Thus I requested a 16 week test --- but my doc was going out of town (No, not to the liver conference -- I wish) so had the hemotologist order the test.  Even tho I gave her the name of the test and the sensitivity needed, they ran a test that only went to 50 and, of course, I showed undetectable. Now at week 18 my doc said my insurance company won't pay for another test.  Also, since the doc has an "undetectable test" result, he is happy.  I am not. I may try for a 20 week, if they will pay for it.

[FlGuy]

HCV, as someone wrote in a post, is predictably unpredictable.  HCV gave me diabetes and hypertension.  I have never been overweight, was never much of a drinker, ok diet, exercise low choles and tri's.  Since TX (wk 20) AIC to 6.3, kicked the insulin and BP under control.  Although I realize that post TX I need to stabilize and figure out exactly where my body is.  Everyone with HCV needs to evaluate options, risks, benefits, costs and all the other factors to decide treat/not.  I'm glad I did but I just did not want this icky stuff in me.  The quandry is what's worse the disease or the cure?  I'm beginning to be more concerned about long-term post-TX effects.  But those are a 'maybe', whereas living with HCV was a definite life changing event - if you know what I mean.

[beamishboy]

i know hep c messed w my mind(terrible lack of control,endless obseesive depression&anger)&body(lotsa joint pain,lowered immunity,sooo tired so quickly)-it took 30 yrs & now its just too damned comfortable in me!!! i need to rid myself of this unwanted parasite...trx sides r really worrisome-esp. the longterm(permanent?) mind effects-whats that all about,please-cougareyes r u ok?thks in adsvance& i promise not to dwell on negatives but i'm only at day 4 of trx& v apprehensive--cheers &farewell all

[cuteus]

this is spooky! I just ended my post to you up there the same way yours ended here! was it simultaneous? I like paranormal stuff.

[cougareyes]

I'm managing tx, the effects have made me pretty useless. I'm 45 years old; at 40 I was in better shape than most 25 year olds. I was one of the best in my profession, and worked with big cats(lions, tigers, etc.) and wolves in my spare time. So my mind and body were all at the top of it's game. It came on all of a sudden over the last few years, with obvious liver dysfunction symptoms. My biopsy said stage 3, fatty liver; my symptoms said more like stage 4.
I got HCV in 1980, diag as nonA nonB hep; and drank heavily my whole life. Stopped drinking about 2 years ago. My point is many people blame HCV on things that have nothing to do with HCV. Many people in there 40's and 50's, it just getting older; and alot of people also didn't take care of them selves in other areas.
If anemia is official at 13.2(as Jim stated); then most of us are anemic during the entire time of tx. Medical facts, not fringe studies; say that long term anemia will cause brain damage,heart problems, and kidney problems. This also has an effect on blood pressure, that could carry on. If you had joint pain before, just wait; think about it any time you put more stress on anything, whether it's already weak or not; it gets weaker. Auto immune reactions, countless eye problems, thyroid; these are all more frequent than your med pamplet states.
I have a family, all negative; I've found statistics show you will probably kill someone with your car than give them HCV, providing you're living a healthy lifestyle. Much to somes opinion, if you take care of yourself you will never get sick from HCV; you will die of something else.
The question is when does the risk of tx become more desirable than the life you're living now. Are you willing to risk your mind and other organs for what HCV may do. Or are you willing to risk the medical science of what these drugs put your body through; whether proven to be long term or not. And whose interest would that be in.       PEACE

[vegas777]

hey coug, hope you're feeling a bit better these days...well said post!

now I get the connection with your name..big cats huh, like the big ones where you live that were in shows daily until one of them let loose on its owner?...

Very intersting work you must have...Of all big cat breeds, which is the easiest to train?

*dip*

[cuteus]

I am glad those who mentioned the after tx effects are also posting the pre tx effects of hcv. It gives credence to either hcv is still lurking at some level or (what I believe more) that what hcv started and damaged for years can not be undone and will continue on. That is why we still get tested for HCC after SVR, tx will stop further damage by the virus but not reversed what it started, as mentioned already.
I also had the RA-like symptoms and fatigue, I still do, is it age(it seems most of us are in that bracket of time where things shut off) or is it hcv or tx?
We are all speculating, so please, new people reading, do not take what you read to mean that there will be damage after tx, from tx for most. as you can see, many have already starting experiencing them. If you can, have a rheumatoid factor, HLA-B27, and antithyroid antibodies checked among some things, maybe even a glucose tolerance test to rule out the onset of pancreatic troubles.
If someone finds a good article on post tx effects, that had not started prior to tx, and where people were tested for everything prior to tx, please post.
I still have the aches and pain of pre tx, to some extent better than pre tx, still have tooth deterioration and herniated discs, now short term memory things, which were there to some extent pre tx. Is it aging, the continued progression of what hcv started, occult hcv or tx? No set answers!
Tx was definetely worth it for me, the misery experienced was temporary and gave its rewards. I think of it as one LONG labor pain which instead of  producing a bundle of joy, gave me SVR!

[cuteus]

the title is in my comment to you above,
well, here it is again:
Detection of minimal residual hepatitis C viremia at treatment week 12 is associated with a high probability of relapse

it was presented on the 15th, presentation #1188.
do you also have a cart full of stuff? it is weird, when I read them on the pc at work they download as adobe readers only, but at home in my Mac, they download directly to my hard drive without a prompt, I am going to have to check the preferences or something. Sometimes I just want to read and not save!

[new-sojourn]

I'm having the high blood pressure thing and pre-diabetic thing b/go to the Heart Attack Prevention clinic and thru testing and extensive family tree research, those things are in my family tree and presented themselves in my family in their 50's and 60's.  And noone else had hep c--that we know of.  And I'm 58.

So, i;m having these problems b/would be having theese problems whether or not I had hep c and tx'd or not.

My joint problems disappeared, however.  Having passed thru all the stages of whatever to end up @ End Stage Liver Diseasse,  my mind was pretty fuzzy for a pretty long time.  And I was really depressed, and I mean really depressed for a very long time.

Now post tx and SVR, I'm not so fuzzy b/I still have short term problems b/I think that was due to the yrs and yrs of sub-clinical and clinical encephalopathy when my brain was awash in toxins ans shorting out.  Now that and the vanished depression were disease caused, not genetic or tx caused.

I'm suffering from bad genes and residual damage from a disease more than anything I can trace to post-tx.

[cougareyes]

Hey all I'm sorry to be such a downer on tx, but I've decided it is my mission to try and save everyone I can from this poison. There is a time to treat, don't get me wrong. But most, and I mean a very huge majority should not be taking these drugs.
Adding to my earlier post; tx is known to create depression, it alters the production of seratonin. Since alot if not most depression is know to be caused by a chemical imbalance, your seratonin levels after tx may never be the same.

Veg, tigers are the easiest to train; I worked for a non profit resqueing these magnificient animals, we worked with them but did not train them. It was an extremely physical and dangerous job, and your mind and senses had to be so sharp. HCV did not deter me from being very good at it.

Knowing you have it and being able to monitor is great, you can decide not to do the things that will make you sick. You can also do things to bring down the inflammation, which I believe is the key to long term damage. There are many factors that have made people as sick as they are; from drugs and alcohol, poor diet, lack of exercise, and just plain genetics. The fact that HCV causes all these other ailments is just speculation.                     Peace

[cuteus]

you are not being "Debbie Downer" you are feeling the severe effects of these meds, they are not going to give you a candy high, that's for sure.

I gather you don't give any credence to the AASLD presentations tying hcv to diabetes, CNS problems, sexual dysfunction and the like? They must be medical speculation based on flawed testing? Maybe, but it can't be all of them. ALthough they do say that they need validation by further studies...

To say that if you take good care of yourself, you will never feel the effect of hcv, many will disagree...but will say nothing until you feel better.
  
I wish your trip was easier and I am glad you are part of the wildlife rescuing process, now, if we can save the artic refuge from the oil tycoons...
be well

[jmjm530]

It is interesting why many attribute post-tx symptons to HCV as opposed to the tx itself. Like you said, most of us are anemic for most of treatment regardless of whether we take Procrit or not.

Like yourself, I was a very young for my old age (58) when I started treatment after carrying this virus for 38 years. I took no rx drugs, hardly ever saw a doctor and successfully completed in long-distance endurance events against those half my age. Hepatitis C had no impact on my life as far as I know.

Almost overnight -- week 2 of treatment to be exact -- I was brought to my knees by treatment. I've gotten up some, but it's been the most humbling experience of my life. I sometimes liken it to the experience of dying but without the relief of death. LOL.

Lately, my concern is growing what impact these tx drugs will have on my future health. I'm comforted somewhat that the decision I made is the only one that made sense given my age and stage 3 fibrosis.

But like yourself, I'm concerned about others treating that have time to wait. I've been criticized before because of advice concerning "watch and wait" for those with little or no liver damage. The implication somehow is that this is doing people a disservice. Like yourself, I feel exactly the opposite. Hopefully, the dialogues here will balance out and help people come to their own conclusions.

Hope this finds you well today.

-- Jim

[cougareyes]

You have to monitor it, just like when you find out you have any other medical condition. I posted a comment about the sexual dysfunction above, I also find it interesting when someone worked at a computer for 20 years developes carpal tunnel syndrome or arthritis; they blame it on HCV. Diabetes is on the rise all over, America's # one problem is being fat; does the #'s w/HCV patients correlate with the rise of diabetes across the main population. Same with the other disorders, with so many people on all types of meds and the environmental contaminates it's no wonder people are developing neurological disorders. I wonder if the HCV patients didn't know they had it and were tested with non-HCV patients, would the numbers be similar. People want to find a blame or excuse for everything, for many HCV is the perfect scapegoat. There is a time for tx, but there is so much disception being used to get people to use these drugs. It sometimes comes down to the cash, who gains from the strong pro-tx push, the svr statistics are still nothing to jump up and down about.               Peace    

[moahunter]

People are dying of Hep C as well though - I have a cousin who died young, so for me, I was comfortable with using the "poison". I am also of the belief that many people with Hep C are not functioning that well - they are more tired than they realize, and as evidence of that, albeit not something that can be tested, is how many people, like me, have been amazed at how much energy they have following treatment. Being able to treat young, I feel almost perfect now, I'll take my 17 Alt over the 60 I had at the outset of chronic anyday, one can pretend that elevated Alt isn't impacting quality of life, but that is not my experience

It's fine to say that people are blaming other illnesses on Hep C, but it is just as fine to say that people are blaming other illnesses as long term treatment sides. Particularly when people are treating later in life - as we age, every one of us, we are going to get all sorts of health issues. For every "bad" case on treatment, and  there are many, there are also many many very successful ones. It's just, many successful treaters don't really feel the same need to post anymore - for they don't have a problem / reason to come to this board anymore.

[moahunter]

Whoops - I'm sorry, not sure why I bumped that :-)