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Combination Treatment And Mental State

Don't know where to start so will just plunge... had high liver enzymes 3 yrs ago. Ignored it (or my doc did).  A little down the road, got routine physical (less than a yr ago), got dreaded words "HCV Positive".  Been through all the stages - I can't believe it, anger, pity... yada yada.
2 mnths now into this treatment. Good and bad days. Some days can't remember what happiness is. Been having some pain and weakness AARRRGGGG! Always been healthy and optimistic (for the most part).  
My dr said I had to treat.  Im 1b, stage 2 scaring. and viral was 11 million.  He indicated 48 to 52 weeks...I don't know people, HOW DO YOU DO IT! The viral did read undetectable in 1 mnth, but I'm only 2 mnths into a yr sentence! If undetectable why keep going for so long!
Don't want to make daily decisions and feel trippy. Will this ease or get worse? Do you feel the mental state is affected by these powerful drugs. Do any of you keep working full time. I come straight home and sleep. This sux.
15 Responses
173975 tn?1216257775
I don't know much about 1B's (I'm 1A) but I'm also on extended (72) week TX (shot 22) and all I can say is it stinks!

From what I understand, the reason you have to keep treating even after reaching UND is similar to the reason you should complete a course of anitbiotics for a bacterial infection:  if you stop when you feel better, the bacteria can grow back and hit you with a more resistant strain of infection.

I believe the virus is similar; if you don't get rid of all the virons, they can mutate and grow back stronger than before.

JboyHK posted recently about what UND really is.  I had thought the same thing as you, why not stop once you reach that point?  

He explained that since there IS no HCV test that can go down to zero, even the most sensitive test, which, I believe is <2, doesn't mean there are only 2 virons left; it's 2 virons per ml.  And since the average human body has 5 liters of blood, that would mean not 2 virons, but 20,000.

Or something like that.

I'll try to find the post and copy it for you as sometimes my math is a little off.

Best of luck,

Wyntre
96938 tn?1189799858
You were only undetectable to the extent of the test sensitivity. That gave you the reading (for instance no virus detected in a milliliter of blood down to maybe 50).  Thing is, you have about 6,000 mililiters of blood in you, plus lots of nooks and crannies where these little buggers can hide and replicate. That's why you go beyond the date of undetectability. Does you doc do regular blood labs, like a cbc, to see how the meds are affecting you?
Avatar universal
Wyntre,Gosh! 72 wks, that's a long time! Thanks for explanation, that puts it in layman terms. Still want to see jboyk stuff though.

FlGuy, YIKES! If its in lots of nooks and crannies how do we ever know if it is really gone? Wonder how long or how many years we have to keep testing if we show undetect? Yeah, they did blood labs.  He said my red blood count decreased two points and white a point but still within normal? (But only in it 2 mnths, hate tothink what will happen in a couple more mnths - f*ck!) What about you? How are you feeling and what mnth or wk?  He wanted to put me on sleepers and antidepress when first started but I declined. But feeling some pain in joints, bones and muscles and may need pain killers. He said just ask when tylenol doesn't work.  He said those can be bad taking everyday. Whats with all that, didn't have any pain before tx. I'm having some crazy dreams on this stuff. You?  Or anybody else?
Avatar universal
hi and welcome, EspritLibre1. im in week 40 of 48. i'm a 1a and am in the vertex prove 1 trial. und by day 28. side effects are different for everybody. there is a full range and you'll see that by reading this board. my sides were nasty in the beginning (1st 4 months). started getting somewhat better after that and much better around week 29. it is really a roller coaster ride with the sides. i wasn't shy about trying meds to counteract the sides, and my doc has been great with trying different meds to help. a few have actually helped. also get a 1 hour massage once a month (used to go every 2 weeks when the sides were bad), which really helps. i had lots of nausea, rash, fatigue, neuropathy (numbness and tingling in fingers and toes), tightness and muscle cramps. joint pain went away after the third month i think (except for the knees, but it's not bad). have been able to work full time (i have a "desk job"), only took 3 sick days since starting tx i think (not including doc visits, for which i make up the time). the brain fog has been difficult. my brain is much less efficient (i'm much slower at problem solving, reading, etc). also have problems with short term memory for which i use compensatory strategies (like writing everything down). physically, i'm doing better since week 29; able to walk longer distances than i was. spent 4 hours at work today (it's sunday and the office is closed, but i had things to catch on) and 5 hours in the garden, potting up plants, weeding, etc).  for me it's a "year out of my life" pretty much, but i'm getting through it. this board is a great source pf information and support. hang in there and best of luck to you.
Avatar universal
Wow! Thanks so much for the welcome and could feel it was heartfelt. Wish I would have discovered this upon diagnosis. Will take your sug and will read more here on others' sides. Glad your sides are letting up and hopefully will follow in your footsteps.  About the extra meds, always been reluctant about taking even otc. That's a bridge I may have to cross. Going to look into massage as that might be my ticket, cuz can't figure if it is muscle or bone and maybe muscles tightening around bones, give the illusion it is bone pain?  Glad to see someone working full time, hate to take off too much work. Been active physically but it has been slowing down due to pain and just mental feeling of I'm tired of it all. All these responses have been great. Thanks all!
96938 tn?1189799858
Mainly, the geno type dictates the length of treatment (tx) geno 1's usually have a start point of 48 weeks. Some docs extend if it takes a while to become undetectable.  For me, by the time I finish I will have been undetecatble for 44 weeks.  But, the long haul is due to the fact that first treatment did not work.  Stay tuned here, a lot to learn around here from people who have too much experience.
Avatar universal
Sorry you have too much experience and that tx didn't pan out the first time. Wishing you the very best this time. Guess I better stick with the long haul as prescribed.  Feeling a little embarrassed about b*tching about 2 mnths. Thanks for taking the time and hope you keep an eye on me and keep me off my pity-potty.  
Avatar universal
Can I be a little forward and suggest if you are not already doing this to make an appointment with a mental health therapist? I have a couple of clients now that have liver problems with one on a waiting list to receive a liver at Duke. The program requires her to attend sessions but she tells me that she gets so much out of just being able to let off steam for an hour. Believe me there are a lot of tears shed and in catharisis. Good luck in your treatment.
194650 tn?1197861746
Aloha EL1.  I hear you loud and clear man.  I'm at wk 9/48, have gone from a vl of 22million to 859 in just 4 wks, will get my 8wk pcr back in a few days docs are sure I am UND at this point.  I too think about just giving it another few months then ending as I am not liking the sx of depression/fatigue/anxiety but I would hate to have to go through this again if the virus were to come back because of quiting early.

Fortunately so far I haven't had any physical pains or reactions to the drugs but in the last 3 weeks or so the depression/fatigue/anxiety has been a f'n roller coaster ride.  One day or week I feel great, go to work, socialize with friends etc..life is peachy; the next I'm holed up in my studio apartment staring blankly at the TV cause that's about all my head/body will allow.  I haven't started the anti-depressants yet and would like to try to get through this without but I may cave in if things don't change.  It sucks not being able to make plans with friends because you don't know how you'll feel from day to day.

I work construction as a carpenter and have dropped to about 25-30 hours/wk since about wk 2 of tx.  Before that I was pumping out 60+ hrs a week and loving it.   Can't tell you how many miscuts I've made in the past weeks cause of the fog in my cabeza.  haha

Good thing about this site is no one considers your venting as a pitty party.  This is THE place to go to vent, most have been there themselves and can give good advice and understanding.  

My finish date is 2/18/08, two weeks after my 40th.  I hope to hear you're right there along with me on this wild ride and we both can celebrate SVR in 2008 along with everyone else on this board.

Hang tough, keep positive and try to laugh. I've found that watching a good comedy can lighten the load a bit.

Peace all.
Avatar universal
psycho, great post and agreed (and no offense)! When I called the dr office this past wk with the weird dreams and mental aspect of tx they suggested antidepress, and I told nurse, nah, but could we talk about me talking to someone.  She said she'd mention to dr and they will call me Mon with maybe a referral. Dont have the time really but maybe should make room.

tjaloha, man we are at the exact time! Hate that you're sentenced but glad I'm in good company! Its like you spoke for me and will be watching to see how you do and hope we can stick together.
Avatar universal
There have been a number of studies lately that find geno 1's who clear at 4 weeks can risk treating for only 24 weeks if they can't handle the sides.  Here's just one of many references:

http://www.natap.org/2006/EASL/EASL_03.htm
Avatar universal
There have been a number of studies lately that find geno 1's who clear at 4 weeks can risk treating for only 24 weeks if they can't handle the sides.  Here's just one of many references:

http://www.natap.org/2006/EASL/EASL_03.htm
Avatar universal
Hey thanks!  I'm taking a break for a minute from my job so will open that site tonight and read it.  Man, wouldn't that be great to cut it in half!
173975 tn?1216257775
Here's jboyhk's post explaining UND.

One other point of confusion that people often have is a count of 2 does not mean 2 virons in your blood, It is 2 per millilitre. So the average person has 5 litres of blood , so the math says 2 copies/ml = 2X5X1,000 = 10,000 copies circulated in your blood.

There is no PCR test that goes to zero and probably never will be (it is entirely possible that when you get that low of viral count, in the ml sample you are tested you can have zero count but some count in other samples of your blood).

Unless someone finds an antigen the virus produces when replicating (such as is found in HIV or HepB).

What we do know is that <2 means a good chance it is not in your bloodstream anymore (whether its in the liver is still debatable)



wyntre
Avatar universal
Thanks.  See where he is coming from and it makes sense. Just not one of those things easy to accept.  Wish there was an easier way to get rid of this.  This is one powerful virus.  Appreciate your getting back to me.  Hope you're feeling well given our circumstances
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