Starting Treatment soon, just looking for support really

[ketamanic]

I was diagnosed with HCV around three years ago.  I am pretty sure I know when I got it, and am guesstimating I have had it for 5 years.  I have been monitored by my PCP for the last two years, and my viral load has always been low(anywhere from 4000iu-300,000iu, averagin ~50,000).  I have been seeing a specialist since January, and we are at the point that he doesn't believe it is going to clear on it's own, due to liver enzymes having been elevated throughout the last two years(usually at least double to upper limit, if not higher).  I went in for a liver biopsy thursday, and have another appt. to discuss my options coming up in two weeks.  I'm just going to come out and say I'm scared shitless.  I know what the possible sides are for treatment, and to be honest the more I read here, the worse the picture looks.  I read of one guy saying he had PERMANENT side effects, depression, lethargy, muscle pain, etc. etc.

Is this the norm for treatment, or a rare occurence?  I suppose it's easy to only see one side of the picture on an online forum, am I just looking for the worst case scenario? 

My doctor has told me several times it's common for him to prescribe percocet for pain and Marinol for appetite stimulation during treatment, which makes me feel some what better, and some what worse, considering I have a history of opiate dependence, and love feeling altered by any chemical more than the average joe.  Yes, he is aware of my history, it was the first thing I told him when we did an H&P.  I am relieved that he doesn't see me as a drug addict, and is treating me like any other patient, however, i don't want to endure the hell of opiate withdrawal again either.  I was lucky enough to make it out alive from my first bout with addiction, I am afraid of another one.  Yet, if it's percocet addiction or liver cirrhosis from letting this stuff go untreated or trying to treat without pain meds and not being able to do it, I guess I will definetly take the addiction.   At least I would be under the care of a doctor this time.

I was hoping I would be able to wait it out until some better treatment comes along, but my specialist believes interferon is going to be in the picture at least five years... and to be honest, I would rather treat now than five years from now when I have a good job that I have dedicated myself to(I am in college right now).  I have good benefits at my current job(short term disability included) so I feel pretty secure starting treatment now.  I don't wasnt to jump the gun either tho.  My doc is telling me he doesn't really make a treatment decision on a liver biopsy, we did the biopsy because I wanted it done, I wanted as much info as I could get before making a decision that is going to possibly affect me for the next year or more(I have genotype 2, thank god, so the treatment will only be 6 months... I'm giving another six to 'bounce back', althought the disability only covers me for 6 months).

So, I guess that is a lot of info, sorry for the book, it's nice to vent tho whether any one formulates a reply or not.  Also, my family is very supportive(no children, but a live in g/f and immediate family isn't too far away), tho I don't think my g/f really understands the depth of the seriousness of just how shitty living with me could get over the next year or so... I have some deep seeded rage and emotional disturbances as it is, and I know treatment can really bring stuff like that out, which sucks because I really feel like I've resolved a lot of the issues that lead to rage/depression/mania/etc.... I am thinking about going on 5HTP while on treatment just in case, as the stuff worked before for dissolving rage(I felt emotionally numb, small price to pay for semi-sanity tho).

One more thing, I know one of the sides of treatment is muscle pain.  One of the uses of a prescription drug, Xyrem, that the maker is trying to get approved is for fibromyalgia.  Does anyone have experience using Xyrem to treat the muscle pain of treatment sides?  Or are narcotics sufficiently effective to warrant the risk of opiate dependence?

Ok, that's enough before I write anymore.  Thanks for reading if you made it this far!

[MissyMouse]

Hiya K,

What GREAT questions you asked!

The "permanent" side effect are tuly not the norm, but unfortunately they do  happen.   You  have the advantage of being young.  The younger a person is when they treat the better they do when it comes to the sides effects and such.

As far as preparing your girlfriend, you might want offer to take her to your doctor's appointment with her, or maybe you can get her to read some of the posts and literature on the treatment.  Somone here once recommneded just leaving the literature lay around the house.  Eventually curisioty will get the best of her and she will pick it up. 

When you see your doc, talk to him/her about starting an anti-depressent before treament.  Most people do do this.  I am one of the fortunate few, and I do mean few, that was able to go 48 weeks without the help of an anti-D but I really don't recommend it unless you have a tremendous ability to talk yourself out of emotional crisis. 

Good luck to you!

Mouse

[ketamanic]

My emotional crisis usually spiral out of control into uncontrollable prick-like behavior, yelling out at nothing, swearing a lot, and eventually, crying at the most embarassing possible times.

Thanks for the heads up on the anti-d, I think that sounds like a good idea.

[Helen]

Missy gave you great advice,
 An anti-d is really important if you already have issues. The great news is you are only 25 AND you have type 2.
 It may sound rediculous but having type 2 is like hitting the lottery in hepper world.   Your chances of clearing are like 85% and it seems, ( now this is my opinion only Im no Dr ) but Ive been coming to hep boards for 4 years now and its seems that type 2's have an even less chance of permanant sides since they are only on tx. (teatment ) for 24 weeks, seems like the longer you do the tx. the better the chance that you might have a permanant side, I think though that the majority of people dont have permanant sides but some just take a really long time to feel good again.

 But REMEMBER we dont hear as much from the people who clear and dont have any problems, the people that post here usually have problems and we are always greatful to those who clear and continue to come back and offer hope
to others.

 And we will be here to offer support to you anytime. Missy will be starting tx. on Tuesday and there are a few others who have recently started so you have a good group to go thru this with.

  Your young, type 2, low V/L, healthy.....your gonna be fine kiddo. 

[ketamanic]

Thanks Helen, from the sound of treatment downright sucks but I am glad I am not going it alone.

Here's to the next 24ish weeks!

[Kira]

Hi Keta,

About the side effects - I was one of those who seemed to get everything possible, but around two months after treatment ended I started feeling pretty normal again.  I'm 55, so no youngster.

I agree about the anti-depressant.  I didn't use one, as I was normally a very content person, and thought I could handle whatever comes up.  If I have to go on tx again, I'll definitely take the anti-depressant.  I think it can make a big difference in how you view and handle what you are going through, on top of the physical symptoms.

Being young and type 2 are great factors for you, and if you are lucky, you could be one of the ones with few side effects, anyhow.  Hope for the best!   

Cris

[memarcie]

Hi Keta,
Can I suggest that you don't go into tx expecting the worst?  Deal with sides if they come up, it makes it easier when you aren't anticipating that you will feel like crap all the time.   I was also geno 2, made it though tx with very few sides.  I worked all through tx, although the last 2 months I worked 2 days a week from home(luckily I had a job where I could do that).   I didn't need any pain meds or nausea/appetite meds.   I took plenty of tylenol, but that usually did the trick.   You have age on your side and I think that was a great help to me.  I was 34 when I started tx, I've been done a year and was clear 6 months post. 

Good luck!

[JustBlue]

Hey there,
Before you go and scare the begeezes out of yourself, I'll pipe in and say I did a year of tx and did not need any special fancy extras, other than a very mild anti D to relax enough to sleep a wee bit, and some folic acid to help me with energy.
I also bounced back the first week after I finished tx with no super bad sides remaining. I did gain some weight and don't sleep soundly, but then again I am older than dirt so it's pretty much expected.

I would say to get the rx for all those extras but I don't know if you will need all or even any of them.
I worked all through tx and was just a tad more grouchy with people at work, but they were wise enough to keep their distance LOL.

Wow, 6 months, you lucky dog.

Don't worry, you will be fine. There are tons of people around here that have had lots of issues on tx, so if you do have any problems or questions, just ask away.

And welcome to the site.

[subverzn]

Keta,

welcome to the club.  i'm heading towards week 11 here and while it's no party... it could be a whole lot worse.  as for the pain issues you were mentioning.. for me tylenol works just fine and i do get the achey, chills from time to time.  kind of like my body just wants to seize up... (just my interpretation). 

i've worked the entire time so far, my job is not physical, but mental and i've been there every day. 

fatigue is an issue, it's like nothing i've ever experienced, but it just teaches you to pace yourself. 

so far, so good at this corner of the world.  if at all possible i highly agree with the anti d's BEFORE you start treatment.  it's helped me greatly just to keep my sense of humor about the entire trip. 

Best to you and yours...

it's a challenge - but you can do it...

pam

[KatNyerHAT]

Mack, 

There's not much more I can add other than the fact you have age and geno going for you.  Being so young, as is Blue, tx may not even phase you in the symptom dept.  An anti-d is a must if you already have sudden outbursts..    I was a maniac on tx, so by the time I did start taking the anti-d's, if I had firearms in my possession, it wouldn't have been pretty....... It took over 3 weeks for them to take effect.  Pre-tx, I was very mild-mannered.

Before you know it, 6 months will breeze by..

Wishing you lotsa luck and you know we're here for ya!

Hugs, 
Kat

[kentucky]

i was able to do 43 weeks of tx. without narcotics.
(i was prescribed an anti-depressent for anxiety, effexor).

please be careful with the percoset. do you really think you would need that?
but i guess everyone has their own opinion. myself, i would not want to be addicted again.
since i am in recovery. and i always try to take non narcotic drugs. and tell my dr.
but my sobriety is my first priority.

i have cirrhosis as well. had hep c. for 20+ years. (type 3A)  but now am undectable.
tx was difficult mostly due to the anemia. and i was only able to take the full dose 1 week.
some weeks i was not able to do an injection.
but i made it, and seem ok. now.

good luck.   i take the 5HTP.  everyday.
no longer on the anti-d.

[19Dragon52]

(((Manic)))

Boy!  You have been given a lot of good advice but I think you have noticed that much in regard to sx's are very individual while at the same time with similarities.  It will be up to you in the end to put together a combination that works for you.  Keep what advice you've been given at hand to help you when you do need to make those decisions.  They will help, greatly.

I am genotype 1a and tx'd for 48 weeks.  I am gratefully over 1 year SVR!  I am bi-polar and was already on a boatload of psych meds so I can't be of much help to you there except to say I still experienced some Rage, Depression & all out crankiness.  Not on a 24 hour basis, though.    I didn't suffer headaches untill the very end of TX but I did have aches that most of the time Aspirin took care of .  Dude had posted one of the News Targets that he receives and White Willow Bark came up in that particular post.  If memory serves me well... ...Aspirin is derived from it.  You could do a search to find that particular Post.  White Willow Bark has been with me since.  It works great for my arthritic pain that I don't have as bad as I did before TX.  Yes, I am one of the few that actually feels 100% better since TX and have been fortunate not to have had any permanent sx's...as far as I can tell.  I have always gotten Cluster headaches even as a child and those pretty much require the strongest pain meds I can get my hands on.  When I lived in CA my doctor gave me Fioinal w/codeine and that worked really well.  Now I live in NY and the doctors here won't prescribe me a dang thing.  The thoughfullness of others helps me manage the headaches.  Sad!  I am also in recovery so I keep myself accountable to my Sponsor.

I am with the mind set here that I wouldn't look for trouble before it happens but the Riba Rage seems to be mostly a similarity so if you have out breaks now I think I would consider an anti-depressant.  It could lighten the load for you some.

Thanks for being so thorough with your post.  It makes it easier to for all of us to try giving you our best input and support.  We'll be here for you at any rate...you can trust that.

Lots of Love & Support.....

P.S.  (I forgot...one of my worst complaints while Txing was having to wear those horrible concrete shoes!)

[beingbecky]

Keta,

Everyone is different on sides. You will alright. You can do it. It's great your a 2 genotype. It just is not an pleasent experience, however it is a doable one in most cases.

Hang in there. Keepcoming in here for support, and take it day by day.

Becky

[negative1]

Hey there K,
how ya doin?
check in when ya can

[ketamanic]

<Good morning, every one>

I've been doing a lot of research on herbal anti-virals, and to be honest I haven't been convinced that anything is going to give me a better chance for curing this disease than Pegasys and Ribavirin.  My DR appt. got cancelled and pushed back an entire month, which stressed me out because I really didn't want to wait another month to learn the results of my biopsy which I was kind of letting the treatment decision ride on.  Thankfully a spot opened up and I am going to see my doc tomorrow to discuss the results.  My doc was pretty set on starting treatment last time I was in, but was open enough to let me do the biopsy to see where I was at with it. 

I was really considering putting off treatment for a while if the damage wasn't THAT bad.  However, I am at the point now where if I am going to treat at all, it might as well be now rather than later.  There is always the chance that a miracle cure is a few years away, and there is also the chance that said miracle cure won't make it through clinical trials due to dangerous or fatal side effects.  At least we know what to expect with interferon, however unpleasant it may be.  I feel like I would be rolling the dice if I tried some kind of herbal regimen that might not even be effective against this virus.  At least I have an 85% chance of recovery with the standard treatment regimen. 

I feel good about tomorrow.  I almost broke down at work, got real pissy with a couple of people(really not good when you work in health care) but managed to keep it together considering the circumstances.  I've only told one person at work what I might have to go through and she is very supportive and I trust her.  I am afraid to tell many peeps because I do have disability insurance there, and I wouldn't want to jeopardize my job over the ignorance of a close minded HR director(yea, yea, illegal to fire some one due to an illness, doesn't mean an excuse couldn't be manufactured).  Am I just being paranoid?  Should I be concerned with losing my job over this?  I've always been kind of paranoid around people in positions of power over me, so I'm probably just being irrationale.  I don't really trust our HR director though, for some reason.

Thanks to all for the support, I am definetly going to need it in the coming months.