cant decide whether to treat

[BonnieRobin]

Have had hep c for 22 years. I feel good. I have been thinking about treatment for the longest time. I just had by biopsy on mOnday havent gotten results yet. I have been weighing the pros and cons for a year and just cant decide whether to treat. Ive been reading and reading and reading and so many people after treatment are worse off than before. I dont think I can ever come to a decision. For example everyone says Ive had this disease for 37 years..Im still here...or someone else will say after all these years we will all die having hep. WHy put poison    in our bodies and get 3 more diseases when we only have one now??? On the other hand some have cleared and are well.
ANd others say there is NO CURE for hep c this is just a new drug thats been around for a few yars and people want it out of their body. Well I do too. But at what risk? I am so tired of thinking about this...I cant function anymore just thinking and trying to make a decision....I have a viral load of 8 million, just had liver scan which was normal and for the first time my alts are normal in the last two years (which I find strange) since they have been elevated the last 20 years? I feel so sick with making the wrong decision and like I said I have been trying to make a decision for a year. I feel so mentally sick I cant function here in the office, I dont even want to get in the car and drive. I have had NO life.
WHy are so any people suffering year or two after treatment? why cant they get out of bed? They felt fine before? ANd I know there are sucess stories...but but outweighs what??

[Forseegood]

Just think your question is a bit premature, first find out what your biopsy says...I'm wishing you the best of luck, and I'm glad that you were able to take it okay, I remember you had some anxiety, as we all do...go out and do something fun is what I think, those results will come soon enough and you'll have time to decide what youre going to do soon enough...

[Forseegood]

also forgot to say, whatever your biopsy says, are you the type of person that can live with the virus? many people can't, whether they have excellent excellent labs and biopsy scores, etc etc...you gotta factor that in too...please let us know the results, have my fingers crossed for you...be well in whatever you decide to do with your doctor...

[madbrad]

  8 million is high......I'm assuming that your talking to a doctor,if so what does he/she say?????
   I have a question, are you having night sweats???
Before I was diagnosed, I felt great and was doing a very arduous workout regimen plus going to works doing construction.....But I was having night sweats for about a year and didn't know why until I got diagnosed...Now I know that my body was fighting the infection.......
    Now I'm no doctor,but it seems that with an active virus load of 8 million,which is a problem because its the active virus that causes damage.....Some people on here I have seen recommend not tx'ing,which is perplexing to me and doesn't make a lick of sense....I think the point is to reduced the chances of damage,by eliminating the active virus...And if in fact you have had a biopsy...I guess you'll find out for sure.....
       Just for example, When I was dx'd, I had a 12.5 millions copies.......The doc told me that he could do a biopsy,but why...I have a confirmed 12.5 millions copies, HERE'S YOUR SIGN!
   I'm glad I tx'd...........even with all the bad sx......I'm still glad.......It's been hard...
   Don't overwhelm yourself with over thinking and worrying.....Just like my old platoon sergeant used to say " You ain't gotta like it,You just gotta do it" ....lol
Keep your chin up......Strap in and hold on.......You have alot of support here.

[zazza]

8 million IU/ml equals 6.9 log. Remember when comparing viral loads, logs make more sense.

From what I heard a low viral load can be equally dangerous as a high. That is why we need to have a biopsy to see the true state of our liver.

The difference between a high and a low baseline viral load is that the SVR rate is higher for low viral loads. It is more common to get an RVR (UND at week 4) with a low viral load. But if you do get an RVR the SVR rate is looking good for both high and low viral load.

The optimal cut-off point for low viral loads seems to be considered 400'000 IU/ml nowadays, that is 5.6 log.

I understand that as long as you are considered to have a high viral load, it does not matter if it is 1 or 8 or 25 million IU/ml.
25 million = 7.4 log
8 million = 6.9 log
1 million = 6 log
The difference is not that great. Also a variation of less than 1 log of viral load does not indicate an actual change, it is within the range of the test to differ like that.

[BonnieRobin]

no night sweats...however from the anxiety I have been sweating.
I have lived with this since 1984. Now Im freaking!!!

[BonnieRobin]

no night sweats...however from the anxiety I have been sweating.
I have lived with this since 1984. Now Im freaking!!!

[BonnieRobin]

Please tell me how you are now?? I would appreciate that. I need all the help I can get.

[mikesimon]

If you want to make an informed decision and have an informed discussion wait for your biopsy results. Once you have the results this issue can be seen with a much clearer focus and then the discussion can begin with some important information to guide it. Mike

[BonnieRobin]

Thanks so much for responding. Am I the kind of person that can live with the virus. Well the answer is I have been since 1984. No problems that Im aware of....Ive been living pretty good. Im just 100% out of control. And of  course I dont know what damage has been done in 23 years.
How can a person be so so strong in every aspect of life and yet be a total
nutjob when it comes to this?? Oh goodness..........

[BonnieRobin]

Thanks..very logical reply on your part and I thank you from bottom of my heart and soul.
However I am panicked.  I never panicked in 52 years) Im making up for it now.
I will try harder.

[Forseegood]

also Bonnie, forgot to say, they say the virus itself can cause anxiety on a metabolic level, not just from the knowledge that we have it (which causes it's own anxiety as we all know) And there's the menopause, are you there yet? Those hormonal changes can cause lots of anxiety for some women...it has for me...maybe go to a talk therapist if you can as well? and maybe look into these other disorders? just some suggestions, you ultimately do as you see fit of course...

[Kalio1]

Waiting on the actual biopsy results is extremely stressful, no wonder you are feeling so stressed. Like the song says, the waiting is the hardest part!

Knowing the nonlinear aspects of this disease, knowing that you can look and feel great yet have this silent killer having it's way with your liver and immune system health is very unsettling. I've been here a few years and the vast majority of people end up with bioipsy results that are much BETTER than their fears told them they would be. Even if you DO have some damage, our livers can heal and repair themselves ( up to a point) so long as the damage isn't too far advanced and even then some people see improvement.

Until you have the results, as mikesimon points out, you can't really make an informed decision about treating so I think your challenge is to try to minimize your stress and fears during this waiting period. Try to put it out of your mind, you can really drive yourself around the bend with all the "what ifs"

[BonnieRobin]

Yep! Yep! Yep! Im trying to get a grip....waiting.......I cant. but I have no choice.
There are others whom ar muck sicker and have to wait I understand. Its just impossible for me. But as Im learning I dont have a choice.
Anxiety call destroy a person that much I have learned in the past 8 weeks of waiting. At least if I can have a drink!! (Just kidding) I havent had a drink in a million years....
I appreciate your help more than youu know..and hopefully things will turn out to be okay.
Bonnie

[madbrad]

To answer you...I doing great actually other then griping and whining....I went thru some tough spots.But not anything I couldn't or didn't handle...I've done 29 of 48 weeks of treament so far..Friday will be 30 of 48....18 more to go WOOOOOOOOOOOOOOOHOOOOOOOO!
    Yes there is light at the end of the tunnel everyone......I do another LFT,along with my CBC at the end of the month...Just got my CBC done yesterday and it looks like I'm in tx...lol....everything looks pretty good...HGB12.5,,it was 13.3.......HCT is up to 39.2 which is up from 36.0...
    I took a little break from riba ...but I'm back on it.....We be jammin along now......

[BonnieRobin]

Thanks for th input....Im glad to hear theres a light at the end of the tunnel.
I know that tunnel is long for some and shorter for others.
How did you feel b4 tx ?? Are you home all day? Are you able to do things?
Inquiring minds want to know. Please keep me posted. I really woould like to know how you are doing as well.
And Again Thnaks for your help boy I need it.
Have a good evening.
Bonnie

[madbrad]

I felt great...I was getting up at 5 in the morning and working out hard till 7am.....Then I'd wash up and go to work......It was all good......What got my attention was one day I wasn't feeling so good,kinda weak ...But I went into my workout like nrmal but lacking the drive and energy to do it so I cut it short...Good thing.....I began to feel dizzy and I thought I was having a mild heart attack.......I got myself calmed down and ended up sleeping the rest of the day till the next day...I felt a little better but not quite 100%....I was worried but finally told my wife ....I'm stubborn...LOL........Anyhow I didn't want to go to the Hospital because I didn't have any Ins.....But I 'm a veteran and I have access to the VA ,which up to this point had never signed up....I put it off another day and all of a sudden I had another incident that thoght I was going to fallout and die...Still stubborn, but Promised my wife I'd go in the next mornin...I did and they thouroughly checked me out ,taking tons of blood...........2 weeks later they called with the bad news saying I had Hep C....I FREAKED OUT!!!!.......I knew nothing about the disease,,,I'd get on the internet and do searches and most would come up with co - infections....HCV/HIV....Now I'm really freaking out.......Anyhow I went and got HIV tested...negative.....Counseled with the Hepatologist and they gave me the where to and what for...And the rest is history.......I'm knd of an aggressive guy,so I told them under no uncertain terms we were going to treat......Especially if this tx would extend the quality of my life another 20 years.......So here we are......I ws UND <50 copies by weeks 10-11...and at my 24 week PCR theres NO HCV RNA Detected.....I'm going on week 30..18 to go....Thank God...........It's not fun by any stretch of the imagination....I'm glad I 've done it,no matter how hard it had been.

Don't sweat it Bonnie....You'll be OK.....

[BonnieRobin]

Im so glad you are on your way and feeling well......The treatment has paid off and is making your liver stronger than before.
Like I said I have had this 23 years...Ive have lived with it with very few problems and continued working and managing  my life. I am alone so its a little hard.
I'll say it again (after all Ive said it about 15 times today) Whatever my biopsy does show I dont know if treatment is for me. DOnt know if I could handle the ups and downs constantly every day for a year. I feel well thats the problem ..with deciding to treat this thing. I dont have a support system and am not financially stable where I can takeoff work for a year and concentrate on my well being.

Take good care & keep up the good work its paying off for you.
Bonnie

Excuse      the typing errors I have cats that hate when Im on the computer. They jump on the keyboard as Im typing. THey want my undivivded attention.
Be well..be happy.

[GrandmaA]

I was between a stage 2 and 3 on my biopsy, but I wasn't ready to treat for a couple more years and studying more about the virus and taking very special herbs that kept the virus from progressing.  Then a doctor asked me if I wanted to live another 20 years and I just going to have my first granddaughter so of course I said yes.  My viral load was 640,000. Geno type 1a. Almost 65 years old.  Got the virus from a blood transfusion in 1977. Treatment does become less successful when you are older, so I went for it. I start week 32 tomorrow. Only 19 more weeks to go. My sides have not been bad, but I am retiring in 3 weeks. I still take a few herbs and they help a lot. Only certain ones are allowed on tx. They are costly but worth it. Re: your job you can get temporary disability, depending on the laws in your state.  I prefer the peg intron redipen because it is weight based therapy. I couldn't understand why a 140 lb. woman would need the same amount as a 280 lb. man or woman. I have lost 14 lbs.  

[ladybug52]

I was diagnosed in 92, sorta, just told I had hcv antibodies. I flipped out and then decided to ignore it since I had no symptoms. Lucky for me by the time I got a biopsy I was stage 1 (minimal damage) Not everyone has symptoms and not everyone has to tx now. As previously stated, wait to get the biopsy results before you make a decision.
One step at a time.
No need to rush or decide till you have all the facts.
Tx is doable, I worried about everything and post-poned several times. I'm no example of a fighter, but many people here have done what they needed to do when they needed to do it. It might not be your time yet.
Wait and see and try to relax.
Spoken by the queen of obsession and worry-
Bug

[madbrad]

There are only 2 ways I coulda got this really,from a tattoo I got in 81' or from IDU in 96 after my divorce.....Either way I've had this a long time and it just activated a little over 2 years ago.....One night I just began having severe night sweats....Till other things happened that prompted me to see the doc.

[madbrad]

I forgot to add...I'm alone too.My wife left me..........But it's better this way.

[jitte]

Hi,

I was originally diagnosed with Hepatitis C in 1996. I also had Hepatitis B and D in the mid 1980's bu t have immune status to B now.

The first thing my doctor asked me when we discussed treatment for my HepC was if I ever had thoughts of suicide. I didn't want to be completely honest with him, but the thought rarely ever left my mind, I just wasn't the kind of person to act on it. I was afraid though of taking a med that might make it seem life a viable alternative so I decided against treatments.

I usually don't feel too bad, fatigue is my main thing I have to deal with and I'm in a position where it doesn't effect anyone but me. I don't drink and try to take care of myself. If I get tired I can lay down and take a nap. Although there have been times when I am awake for a few hours, sleep for a couple, and repeat the cycle throughout the day.

I was married to someone who had the virus and we had planned on her taking treatments first, me taking care of her while she did, and then me taking treatments afterwards but the marriage didn't work out. Now I am alone again and don't want to take anything that is liable to make me feel worse than I do now. I had hoped to beat the HepC virus like I did B, I developed the antibodies myself without any kind of treatment, but it doesn't look like that's going to be the case.

Treatment doesn't seem like an option for me at this point. I may pay for that decision later on in life but I'll take responsibility for that decision if that times comes. I did just see the doctor and he said my blood work looked surprisingly good so I guess I'll just continue on like I have been for the past 11 years till I am in a situation where treatments seems more like an option or the virus takes it's toll on me.


I just recently put up a forum for support and awareness for people with Hepatitis C if you would like to stop by and say hi. I'd be glad to have the company. I wish you the best of health and luck and hope you make the right decision for you.

Take care,
jitte
http://hepatitisc.yuku.com/

[Cindy10]

First off you should wait for the results of biopsy and talk to your doctor about pros and cons of treating. But I must say not everyone gets real sick on tx.
I am doing shot #30 tonight and I feel fine, a little fatigue. My husband is on tx as well shot #16 tonight and he feels fine as well except skin rashes.

Dont fear the worst, you may fine. Also if you do not have any damage you may not have to treat. But if you wait until you are older you may end up with damage and tx might be tougher. Something to think about. I do not have any damage but still decided to treat while young and glad I did.
No regrets here yet!

[BonnieRobin]

Thats encouraging..................no sides at all???
How long have you had Hep ?
When you get a chance let me know about your journey..You can be brief ..I dont want you to go ino a whole saga if you dont have too.


Thank you so.
Bonnie