what to expect

[timedog]

First let me say hello to the group. Just found this site yesterday. I don't know all the terms you guys use. I have hep c did liver bioposy in stage two and type two genome. I started treatment on monday Ribavairin and pegasa interferon. Read alot about side effects which is what I want to know about at the moment. What to expect when. I know it is different for everyone. But if I could get some straight anwsers here. Like week one I felt this week two that and so on. Right now I don't need any cheerleading just the straight dope (so to speak). I am in this for the long haul and just would like to know what to expect and when.

thanks for any help you can be

[nygirl7]

Good luck to you, the light!  I hope that you can stay around the forum, it's a very helpful place...during treatment we tend to really isolate ourselves because we feel crummy most of the time and this at least gives us some friends to hang out with and chat with who understand how we are feeling and what we are going through.

i found that I was very very tired at first myself - I didn't have any of the "flu" side effects that I had read about (not until about week 30 and then not all the time).

I treated for 72 weeks and I had two genotypes both 1A and 1B and I am now "cured", SVR for almost 11 months.  It's not easy but you have a great support sytem with your family and just hang in there - you too can do it!

[thelight419]

I just started treatment on sunday night,Is now thursday.I just feel a bit nauseous and very sleepy.I expected the worse and hoped for the best.I hope when i finish this anf if it works I can go back to school and get off ssi.My family is helping me financially so I can get thru these treatments without having to work some tax free job which are hard to find and than the plan is support for another 22 weeks while I finish school .Than as the saying goes I can eat for a life time.I feel blessed to have my mom and siblings give me this chance to try and get better and to have something to look forward to at the end of my treatments.I have had hep c for 25 years I was feeling sick for a long time before i started treatment.I noticed I have had no hearburn in a week.I get a medical ride to al my doctors appointments.I really don,t have any energy.after I shower get dressed do housework laundry and walk to the grocery store I am so tired I come in the house and just plop.I just do the important things firtst.One has to have food and clothing so those are the important.I still have to find the energy or a way to get across town to pay my rent .I know I am rambling I have been in seclusion for a week.I have to do something about that.It kind of my fault cause i cant stay awake long enoughn to socialize.I go up North to my families on weekends thank god for that.Again the biggest side effect I am noticing is ver very tired its like my body feels like lead.I could sleep standing up in line at the grocer y store

[GoofyDad]

I'm finishing up my 26th and final week. I haven't had it too bad, but I have had ongoing anemia. Thought processes are slow. First couple weeks I was still swimmming laps, next few walking the neighborhood, then I went for a spell where walking to the car was a strain. It also got to a point somewhere in there where reading a paperback was tough.

I worked and did one cross country plane trip. It was doable but tiring.

Best of luck to you.

[EJR]

Hi,i am going to do # 37 this friday(1.8/1200)pegasys,3a mild everything/non-detec at 12 & 24 wk w/normal alt's.The effects at least for me are either bad or good.The body aches are for up to 72hrs thru monday,the worst of symptons.I take up to 6 daily-liquid advil over the 3 day strech and that helps.Your symptons are going to be differ from everyone else,but i can recomend to put a easy lifestlye in place(daily routines,chores,work etc)I have found that just going to work can be hard,then i sit in front of a computer in one of those corp-cubes so i just do my job and focus on one task at a time,seems micro-managing your hours thru the day works easier.My delema is...How much to do after 48 weeks,doing a extra 12 for a total of 60.I've had two viral breakthrus because of dosing adj(whole another story),but am sticking to the full blast and it appears to be working,see my doc in april to dicuss.Good-luck !

[FlGuy]

as you read here are a few abbreviations:
dx = diagnosis
bx = biopsy
tx = treatment aka the meds riba and interferon
sx = side effects, from the tx
pcr = blood test to determine viral level
cbc = complete blood count,
cr*p = how you may feel, hopefully not
hgb = hemoglobin, a component of the cbc
svr = sustained viral response, some call it a cure
ifn = interferon, source of sx and cr*ap
riba = ribavirin aka rebetol aka copegus and another source of cr*ap
vl = viral load, as counted in the pcr
bs = what my wife thinks of me on a good day

good luck

[FlGuy]

You've got to stop sugar-coating everything.

[amommy]

Timedog, Dale ray completely hit the nail on the head :)  
And the best part? you may get all of those sxs and MORE or none!

[jmjm530]

I had a rougher time than Del Ray and well past 12 weeks -- let's say past 40 weeks. On the other hand, most here haven't had it that bad. Some hardly have any sides. You'll find out soon enough where you fit in. My only advice is to monitor your hemoglobin (hgb) on a weekly basis in the beginning. A big drop in hemoglobin can be devastating early in treatment and make you wish you could die. Good hepatologists proscribe the rescue drug "Procrit" to make you feel better keep you on treatment. Unfortunately, many do it too late making you suffer needlessly, or worse yet, taking you off the drugs temporarily which decreases your chance of SVR. If you haven't already, this is a good time to discuss rescue drugs such as Procrit with your doctor. Does he use them? At what point? Etc. If he doesn't believe in the rescue drugs, find another doctor if you want the optimum chance of treatment success.

-- Jim

[rifleman]

Just paying my weekly visit.  I see below that You might be finished, Jim.  54 weeks seems like a long time.  If you were undetectable at week 6. . . . . .jeez. . . . I think it is gone.  Must be tough to give up the tx after taking the stuff for over a year, but I don't see how any of those little sdratsab(read it backward) can be alive.
DJL

[jmjm530]

Looks like I'm finished at 54-weeks, to be verified when i don't take my 55th shot. LOL. Based on my age (59) and histology (stage 3) I was given tx advice ranging from 48 weeks to 2-years by one internet doctor. Most said 48 weeks by my treating doctor asked for a little more. In the end, it's my call and I'm grateful my medical team lets me work that way. I sure hope all the *)*&)&& are dead as well but at some point -- as you well know -- it's out of our hands. At least this phase will be over, and that in and of itself is a huge relief and victory of sorts. Thanks for stopping by.

-- Jim

[timedog]

Thanks for everyones comments and infomation very helpful. Will follow up on the advice. For me so far so good after the first shot. No flu like symptoms really and just a  little more tired then usal.

As for a lot of us I must work, which is challenging enough on it's own. I travel a lot and manage a large group of people. I know a lot is going to depend of me just toughing out the hard stuff if and when it should come. I just wasn't sure when to expect it. At my doctors suggestion I have put a halt to traveling for 6 weeks and am getting my blood tested once a week to check on cell count and what ever. Will keep you all posted as time passes.

again thanks

glad you are all here.

[NYgirl]

wow that was excellent advise on your doctors part - i like him!

the first month while you are waiting to see what happens with the hemo it is so important to keep a good eye on the CBC and he sounds like he is all over it.

i wish I didn't have to work either - I chip in on the lotto pool with others here at work LOL - it gives me something to dream about at the very least.

it sounds like you are going to do JUST FINE with treatment - you seem to have a great doctor and a great head on your shoulders with a really positive attitude. with all of those attributes...you just can't go wrong!

(PS Watch out for when you get the "Riba-Rage" make sure you don't go and fire all of your staff in a wild rage!  ;-)

[fishdoc]

Hey timedog, seems lots of us are either canine or piscean..;)

I am on week 5 (five shots).  First three, no problem.  Last couple (with a big dose of stress thrown in the mix) have been pretty rough.  I too travel more than I would like, hopefully only monthly for now... and manage a small group of people.  so far, I have not had the one that hasn't been mentioned: I think they call it riba-rage... short fuse syndrome...
like I said, so far so good.

Question for all: I had a two week cbc, and liver profile, 4 week, next one is 8, then 12.... is that often enough... or should I call if I feel bad just to get more... no comprehensive baseline or thyroid...
c.

[cuteus]

I got monthly bloodwork and monthly dr's visits

[NYgirl]

I don't think that is near enough - you need to get a CBC at LEAST every other week while your body is adjusting to make sure that your hemoglobin is not dropping if nothing else.

Mine went from 15 - 9 in a little over a week - can you imagine what could happen if you don't get any blood work in a month? Once it happens to you (and it's not just how low it goes...but how FAST it drops) that is the time people quit treatment most often.  It is what makes you think you cannot go on. You will need the meds immediately because they take a few weeks to kick in. But if you aren't being regularly tested.....the ONLY way you are going to know is when you 'fall down and i can't get up'...literally and that is HORRIBLE.

Please see if the doc will go for at least a weekly CBC - and maybe a monthly hep panel etc. or every other week so you can keep a good eye on the hemo!

[rifleman]

Defense attorney.  In fact, had a 2 day trial this Monday and Tues and won an acquittal.  I am still undefeated at trial, but then, I know when to tell people they are F'd and that they shouldn't go to trial.
Prosecutors like to play chicken with defense counsel to see if they will cave and beat a plea out of their clients.  After dealing with Hep C (a much tougher customer than any assistant DA), I am definitely NOT the type of guy to play that game with.
I treated myself to a new handgun.
Good luck w/ the hep-free life.  Very nice to have that monkey off one's back.
DJL

[Mister beagle bailey]

I think it's important to watch your HGB, it's part of the CBC.  Riba at times causes anemia on the meds we take.  

Hope this helps,

Bob

[sunspot]

I had no reaction from the first two shots other than nervousness. The third week I got hit with fevers and chills. After a month my HGB dropped from 16 to 10.3 (anemia) the plagued me for the remaining months of tx.

[FlGuy]

Good to hear it's going well.  Smart idea to get the handgun after the riba left your system

[Dale_Ray]

You want it straight - That's how I like it. You will feel like **** after a few weeks. Chills, spike fever, You need to force feed water daily at 1 oz for half your body weight (imperative) deep headaches that Tylenol won't tame. blurred vision, upset stomach, shaky hands, no appetite, zero energy, tongue sores, nickle taste in your mouth, Mr. Johnson becomes non functional, rashes and terrible itching, aching in your joints, insomnia and constant need to pee. Hair thinning, problems breathing, the belief you are having daily heart attacks, constant sore throat and really bad indigestion. Enough gas to launch the space shuttle. My advice would be not to trust a fart or pass a urinal. My appologies if I left anything out. PS At 12 weeks it started easing for me and is a heck of a lot better than before. I wish you well my friend and its like riding a daily wave you never know how high or low they will be. Dale

[Dale_Ray]

I know it, my timid side seems to show through since my dx after having my pcr, cbc and hgb test which lead to a bx followed by unexpected bm before biginning tx. The sx have been cr*p since beginning with the ifn and riba. However my vl has fallen since my last svr test. I have suffered from accusations of bs but wife is obviously imbalanced or suffering from some neorological state (delusions of having a man in the house) that I am unaware of. Well enough of the sugar. Dale

[rifleman]

When did you take that 54th shot??  I know that I took my last shot on a Friday and then ate riba for another 6 days.  I had 3 pills left Friday morning (the week after the last shot) and tossed them in the trash.  The next day (Saturday) I was out doing all kinds of stuff.  Washing the car, picking up branches & burning them, etc. Of course, 12 weeks is a lot different than 54, but you should feel a hell of a lot better once that peg is out of your system.
DJL

[jmjm530]

Rifle said: When did you take that 54th shot?? I know that I took my last shot on a Friday and then ate riba for another 6 days.
--------------------
Good cross. Are you a DA or defense attorney. Forgot. LOL. Shot 55 is due around now. If I pass on it, then it will be 54 weeks. Glad you had such a fast recovery but like you say, 12 is different from 54 although my guess/hope is that these meds will flush relatively fast.

-- Jim

[Mister beagle bailey]

First let me say welcome andyou will findmuch support here.

I'm a 2B with a starting VL of 318,000 and Sunday will do shot #12 my half way point, being a 2 will treat for 24 weeks.

For me the first shot was the worse with fever, chills, etc. very flu like.

then after that it was the riba that started tobrng my blood count down, that by Tues. my HGB was 7.1 and I went into the hospital for transfusion and had 2 units of blood.  this doesn't happen to all but it did tome.  Now I feel great and still on meds.

Some words of advice; make sure you drink plenty of water, in the beginning I didn't and had bad sxs because of it.  I now drink 80 oz a day. Before the riba rash started on me I bought the GOLDBOND TRIPLE ACTION LOTION (green bottle) it's extra strenght, and use it a few times a day, so far so good no rash.

Hope this helps and good luck,

Bob