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.
Just about everybody who first comes on in here is freaking out with "what will the sides be!!!". I did too. It's human nature.
A lot of time we find out that it's been made MUCh a bigger deal of then it should be. Personally I didn't have ANY flu type reaction at ALL - but then later I got hit very badly by the anemia. It's all one big cr*pshoot. Nobody can say what will happen at all.
The one thing I can say honestly is that most of us have found the sides to be MANAGEABLE. While no fun time living with them most of the time is doable.
I have raised two kids and come to work the entire time. Somedays are harder than others but I just get up. The only time I could not was a few days when I first dropped from 15 - 9 in a little over a week on the hemoglobin. MAKE SURE you get a weekly CBC and you watch those results because while it can be helped...it takes a few weeks for the medication (Procrit or Epogen) to kick into your bone marrow and grow some new red blood cells! A good idea is to talk to your doctor RIGHT NOW and ask "what will you do if my hemoglobin drops? will you prescribe procrit or epogen? what about my white blood cells will you prescribe neupogen?" These things are VERY important to know. Anemia is one of the biggest reason people stop treatment.
you said you took your shot already - did you have any sides? you SOUND (LOL) good and I hope that you are.
Any time you have a question just let us know. Oh a little cheatsheet below
SX Side Effects
There are tons more and I'm sure you will get the hang of it all in time.
Best of luck. When I think of more of the abbreviations I'll post them ... the brain fog just caused me to totally blank out!
I understand wanting specifics. It is hard to imagine how this whole treatment will play out. Here is an overview of my personal experience..
Week 1- about 6 hours after shot had MAJOR bone aching chills that lasted several hours. Felt VERY exhausted the next day. Also determined during this week that if I did not take riba on a full stomach, I felt terrible. Had to learn the hard way. Continued to feel very "out of it" and achey for a few days after tx.
Week 2- chills came about 8 hours after shot. They were not nearly as bad as week 1. They almost seemed more intense but did not last as long. I dozed off and on during that time, which is much better than the week before. Body seemed to be adjusting a little to the meds. Riba still needs to be on a full stomach. Feel very run down for pretty much the entire week. Usually perk up a bit on wednesday and thursday and do injection on Thursday nights.
Every week thereafter my sides have gotten a little bit less. I pretty much do the shot and go to bed now and sleep through the night. I still feel EXHAUSTED and run down for about 6 days after the shot, but it does get a little better each day. Around week 10 I got some major riba rash all over my legs. It is still there today, very itchy and painful. I have stomach cramps more than usual and feel nauseous more than a normal person would. I find that I need to sleep a lot. I have a two year old, and thank goodness she still naps, I nap with her daily. I work 2 nights per week (I am very fortunate on this front) but it completely wipes me out.
I guess at this point in the tx, my exhaustion is the worst sx along with the riba rash.
Is that at all helpful? Like the others have said, your experience may not be ANYTHING like this. But, I know it is helpful to hear what MIGHT possibly happen. Good luck! Stick around here :) It's a good group!
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
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
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.
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.
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.
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.
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.
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.
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! ;-)
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...
Welcome! Hey, I did the weekly Pegasys and daily 1200 ribavirin.
I'm Genotype 2a, level 1 fibrosis. That treatment was a "cakewalk"! I had no problems cept a little pain in the back of my neck(like the flu) that would come and go. I did kinda weird out though. Nothing major. I would do things like spend three days telling my wife how important it was to keep mustard in the fridge. Again, a "cakewalk". Bad thing was that the virus didn't clear for me. Viral load dropped then went back up.
you need to drink water!
After a few months off, I started on Infergen/1200 riba. Uh, that kinda kicked my butt. Kinda like flu symptoms. Weak and not hungary. I lost some weight and still would spend three or four days telling my wife how important it was to wear a blue shirt on mondays! I was tired but still worked and tried to keep up with the family. Never vomited or lost my hair or any thing like that. Sx got better and came and went. Drink lots of water.
Oh, I eat lots of peanut butter sandwiches, oatmeal, Yoplait smoothies(hi protein), bananas, etc. Did I mention,Drink water.
This is my straight dope. I hold no punches. BUT, we are all different.
Go for it and try it for a while. You can get off tx but each time you consider, think about the alternative.
Oh yeah, I cleared October 7, 2005 and I'm about to take one of my last three injections. We'll see how I do once off meds. I can handle it either way cause I tried my best.
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 !
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
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.
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.
I think I should have read your post before I posted.
Oh my gosh,............it is almost embarrassing,how closely my "list" resembles yours!!!!!!!!!!
I left some of the stuff out when I posted to timedog,...hey my momma told me I should always have "some Mystery" about myself.
Cats outta the bag!
"Hey timedog, seems lots of us are either canine or piscean..;)"
LOL, excellent obsevation in C-19!! Timedog, meet Sindog and Genedog". Funny as H*ll!! As a genetisist, can you explain the abundance of packs and schools in this forum? Perhaps due to intense intra-social behavior?
and these guys are married. So after 20-30 years of marriage, they understand their role in life. They are obedient companions, watchful for their mistresses slightest wish... and they still scratch at the door at bedtime.....
Me thinks fishy doc spent to much time under water
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.
I do shot #5 tonight. (wish me luck) My first shot I took at 3:30 pm at the PharmaCare office with nurse present. By 7:30 that night the aches and very flu-like symptoms began to hit, they really came on quite fast. I took 2 tylenol pm and slept through the rest of them.Tonight I will do my shot at 7:oo and at 8 I will take my Lunesta, I do not want to feel that creepy sensation. Most of my complaints were during the first 3 shots, I had a "paranoid like" feeling, jumping out of my skin, edgy, I dont know how to really define it,.it is just uncomfortable as hell!!!!! I wish you the best, and we really are all different, my hubby went on the rescue drugs right away b/c his numbers dropped so fast. I went to my hep doc today and they said I am anemic, but not enough for procrit yet, ...shucks, and I was hoping I could stick myself twice tonight!!!! hehehehe
Anyway, I cant complain too much, cuz this last week really hasnt been too bad, ecxpt for my very sore eyes, oh and the headaches, and I real tired, and I guess I am still a little edgy, and my tongue feels like I sucked on a burning cigarette, but never mind my whining, I was trying to be positive!
"Just curious, did your doc started you out with 48 weeks? Were you treatment naive? Was there a reason he went outside the 24 weeks that most 3's treat for?"
Actually,i have never truly heard(at least personally or reading on forums) of 3a's doing 24 wks and having a svr.My doc had(5 yrs ago) treated me in a trail but had viral breakthru(intron peg*weight dose)w/1000mgs riba,curbed the intron down after a non-detec-12 wks due to droping WBC'S.Anyhow i'm not a MD but based on observations personally and others,you want to hit the virus with max dose and stay on that dose.Continue if you have a 2 log drop and normalization of hepatic funtions(mine being mild alt's) both which i have done on 1.8/1200 pegasys at 12/24 wk tests.He is now saying for non-responders/relaspers especially on other interferons you want to get to non-detec by 12 wks and then stay on it as long as 48 wks to hopefully SVR,being staying clear of the virus for 48 wks if i can tolerate it,apparently not many can...tbc
PS,the only support drug i take is ambeinCR,nightly now(thats going to be fun getting off of)
Welcome! Everyone is real different. I had no sx with first shots, and really nothing bad except some fatigue till about 4 weeks when I got the anemia. Hgb dropped from 14.3 pre treatment to 10.0 - got authorized from the procrit, and so far it keeps me feeling pretty good. Only real symptom of the anemia I had was feeling winded. Add the occasional riba rash, shedding hair starting around week 20, and a new prescription because the eyes are drying out according to eye doc! Worse symptom is fatigue, and work helps keep me from thinking too hard about it.
All in all I have done things that sucked worse and lasted longer! Good luck and may your sides be light! I am a 1A, on 30/48.
I suspect the large number of canines comes from the age grouping. Lots of us are baby boomers, hitting the fifties, and these guys are married. So after 20-30 years of marriage, they understand their role in life. They are obedient companions, watchful for their mistresses slightest wish... and they still scratch at the door at bedtime.....
now, most of us fish are women- fisheress, of course snook is male, but young- doesn't understand his role in life yet, probably not married so he doesn't understand the world is 70% water, and since the devonian, has been ruled by fishes. Think your in control : try ordering someone elses FISH around....hope you get a laugh... if you can't dazzle em with brilliance, baffle em with bullsh!t.......
Hey, Dr. Who starts on the SciFi channel on Friday -- you're not a fan are you??
I like your direct approach -- I'll give you another perspective. I am a 1a with a grade 1/stage 1 bx, and will do the big #36 tomorrow. I started out great. Did my shot on Friday night so I could recover on Saturday and be ready for work on Monday. Instead of a bad Saturday, I had incredible energy. I loved it -- and it was all mine -- I didn't have to use it for the job. After about 4 weeks, I stopped taking the tylenol that the doc told me to take before each shot - I never had the flu-effect. I was a bit nauseus and appetite was off - lost about 10# during the first 10 weeks, but haven't lost but a few pounds after that. That incredible energy leveled out - I don't feel that anymore (darn).
I did start feeling the drop in the hgb pretty quick (when your hgb drops over 2 points from where it starts, it will really have an impact on QUL (quality of life). Started taking Neupogen for drop in ANC at 15 weeks and Procrit for hgb at 17 weeks. -- Those 2 are the lifesavers - most everyone here will tell you that.
Hair started falling out at 12 weeks - suppose I have lost 40% - and off and on get riba rashes - a nuisance but not bad for me. Now at 36 weeks I am plumb worn out. Tired all the time, not from anemia but from the length of the treatment. I work about 50 hours a week right now and it is really intense. I have given up most all other activites until this tx is over.
Welcome to the forum. This place is a life saver. My advice -- get copies of everything. Make sure you get copies of all the bloodword done. We have found we need to be in charge of this treatment. Ask your doc for a referal to a hemotologist (blood specialist). They are better at monitoring the blood drops. And ask anything. We are pretty lose here.
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!
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.
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
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!
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