Hi, I was diagnosed with hep c 6 weeks ago...went to GI Doc who did an ultrasound of liver and lots of blood work...he said my liver enzymes were normal, iron normal, ultrasound looked good. The lab work I have shows hepatitis c quantitation 190,000. HCV log10 5.279. Genotype 3. He didnt seem to think i needed a biopsy at this time. He gave me all the side effects of treatment. Scared my husband alot. My next appt. is after the holidays in Jan.2007. should i ask for a biopsy before starting tx? My Dr. didnt seem like I needed to. My thought was to start tx in June after school is out. I'll have the summer off. Any thoughts on necessity of biopsy? Thanks and God bless.
Hi....sounds like you're a teacher. What is you're grade level or specialty? I'm a teacher and Geno3, just finished treatment. How long do you think you have had the virus? I never had a biopsy before I started treatment but did 5 yrs before and 5 yrs before that. I still wish I would have had one before treatment. The more you know, the more informed you can be with your decisions. I still would have treated, but I would have loved to be more prepared. Dont be scared of the virus or the treatment, just aware and prepared!
Welcome to the forum. Sounds like you are making a plan to treat that is well thought out. I think that is a good plan to start on your summer holiday.
The doctor's thinking for some of us 2's and 3's is that we have a good chance of beating the virus with treatment and if you/your doctor have already decided on treatment, the biopsy isn't needed as a tool in your decision so why take the risk involved in having one. Although complications are rare, they do exist.
It wouldn't have changed my decision to treat, I planned to treat regardless but it would have given me more info to decide on how LONG to treat the first time. I, like Morgaina, am also a 3a and wish I had had one too. Recommended treatment for 3's is 24 weeks, so I ended up doing the 24, failing and now am doing 48. Had I had a biopsy, I would have done 48 from the jump street due to my liver condition, so in my case it would have had real value and possibly could have saved me 6 months of meds. Eventually after I relapsed I was able to convince the doc to do a CT scan. As it turns out, I found out after starting treatment and having failed the first round that I have cirrhosis, which probably had something to do with the first treatment round not working.
This is understandably a real shock for you. Take some time and let things sort out in your head. It's all going to be OK.
Based on your comments, I'm guessing that the doc is pro treatment no matter what. That's not an unusual position for a geno 3 patient. If you're convinced you're going to treat, that might be a reasonable approach, providing the Doc can rule out cirrhosis w/o a biospsy.
Now I've probably gone and scared you with the possibility of cirrhosis. It's extremely unlikely that with good bloodwork and a clean U/S, you have anything to worry about, so you could forget I said anything. But if you do that, what I'm going to say next won't make sense. So let's keep the 'C' word in mind for now, and agree to forget it at the bottom of this post.
One reason for a biopsy is you might find you have very little damage, and choose not to treat at all right now. That would be my personal choice, given minimal damage. On the other end of the spectrum, if you have really significant damage (cirrhosis or close to it), you might decide to treat a bit more agressively (namely longer). So that's where a biopsy comes in.
Now some unsolicited advice on geno 3 (I was one and did quite a bit of reading). Geno 3 is easier to clear than geno 1, but it can be persickity. The 4 week viral load test is key. Most (say 60%-70%) will be clear at 4 weeks. If not, that could be a red flag that longer treatment is called for, especially with advanced damage (an argument for biopsy).
Another thing to consider is Ribavirin dosing. Many protocols, and I believe FDA guidelines, call for 800 mg Riba dosing for geno 3. Contrary to these guidelines, it's looking like a higher weight based dose of 1000-1400 mg may work better.
There are a number of studies that say if you use higher Riba dose and clear at 4 weeks, you can fold up tents and be done in 12 or 16 weeks. That's pretty attractive, and I would have gone that route, but I have cirrhosis and so I went more agressive with 26 weeks. Again, the biopsy came into play. Had I not cleared at 4 weeks, my cirrhosis had me signed up for a full year.
Good luck. There's a lot to learn but your knowlege will ensure you get the care that's best FOR YOU. Please understand your options before agreeing to anything. We're here to help.
PS We have a member here named forseegood. She can discern alot about your health from the state of your stools. You may want to post information on that subject for her valuable analysis. Regularity, diet, texture. These are all things she'll need to know for her analysis.
Hey I can think of worse places!
How's that job going? I hope things are sailing along and life is getting back to "normal" whatever that is. I also hope you are feeling good and strong. How are things going? I hope the interferon hangover doesn't get in the way too much. I imagine in your profession it could be stressful especially dealing with kids.
I seem to be having a rough time, maybe the sheer duration is bogging me down. Im trying to distract myself with some work I can do laid up and that helps me mentally. Physically I feel weak, always. I know lack of activity begats fatigue but when I try increasing activity I get nauseated and feel faint. haha
What a quandry. No Procrit here but some days I sure wish I had some.
I just want it to be over and I want to succeed like everyone of us do. You know the feeling! Im done the end of Feb.
It's pretty funny that I get excited by things like having my Hgb hit 11 LOL so don't feel bad about spending a friday night around here.
Kalio, you are such a strong individual I can see where you feel the principle of laziness begets laziness has merit, but not here. You're poor body is doing it's best and what it's telling you it really means. It's in a battle and needs you. My favorite exercise was meditation (or blindly staring into space, depending on your perspective). I thought I would never have any strength again. I was wrestling with the remote. BUT for the last couple days I was hauling concrete from my basement as my boyfriend was drilling it out. I couldn't believe it!!! I could do it again!! Couldn't for a long time and still working on LOTS, but every day is another surprise (or occasionally a p!ss off). My body is still the boss.
Your right, good place for an alone Fri. night.
Fibrosure is a non-invasive alternative to a biopsy. Could be a reasonable compromise in your situation. Are you seeing a hepatologist? That's a GI who specializes in livers, and in today's climate that generally means Hep C. Risk of complication of biopsy are slim but real. Less than 1% for complications of consequence would be my guess. Today they guide the needle with a U/S - making it pretty precise, but mistakes happen. Internal bleeding can ensue, yah-da-yah. So little real risk, but it ain't like having a hangnail fixed.
Well, I just love your choice of occupations. It's just what I do!. Actually, I have always worked with behavior children, from mainstream to multiply disabled and my last 5 yrs. was with autistic and FASD. Very best years. There wasn't as much inclusion as I would have liked but their difficult moments were a little dangerous. I would love to work in your capacity where your one to one with discreet trials. I couldn't work while treating, my behavior angels can spot a weakness a mile away, it wouldn't have been fair to my staff. Now moved to a inclusive setting in a high school, it's like being on holidays for me. No-one has even tried to bite me! Take care, hang around here, you'll find steady support!
Thank you everyone for all of the info...it is alot to absorb,but I have faith and determination to not let this define who I am. Just one more challenge in this life of mine. Praise God!...I am a special education behaviorist, working mostly with kindergarten and first grade autistic children. We have an inclusive classroom and I work one on one with some of the kids in a discreet training trial. Very rewarding, but can be mentally tiring. My Dr. is definitely pro treatment. I was a little surprised he didn't want to do a biopsy. I think I have had Hep C for close to 30 years.I'm 49 this Nov. I had hep B when I was 15, so they did a routine blood test 6 weeks ago and found the C. All my other blood work was good. I'm immune to B, need to be innoculated against A they tell me. The Dr. also mentioned a fibrosure test, but doesn't know if my insurance will pay for it. Anyone know anything about that test? Also since he didn't suggest the biopsy he didn't go into detail of risks involved in that procedure. What are they?
Again thank you for all of your kind words and information. It's nice to be able to share with others experiencing this.
Yes i would ask for a biopyse!!! Because it the only way to see how far gone ur liver is and what stage and grade it will be, scanning something doesn't show much, all that does is see the out side of the liver not to much inside..
Biopyse is taken on the side, next to the bottom of the rib and they go half way into the liver to get the Best Part !!! LOL
I had 2 of them (Biopsye) and both shows the same No change from taking the meds, so may be this time it will do it job!
Have ur Doc give u a Biopyse !!!! The only Way..
Have A great Day
Always have a smile while doing treatment. :)
Thanks again for the info goofydad...I think i will try to see if insurance will pay for the fibrosure test first, and then go for a biopsy if they don't. I do have a GI liver guy, tho he is a PA, not a MD...seems he's does all the Hep C work in the office. I'm going to call him Monday, and find out more about biopsy. Who does it, etc. He didn't seem to think because of my numbers, and bloodwork that I needed to start right away, so that gives me time to process all of my options. Because of the length of time I believe I've carried this thing, I do want to know how much damage has been done.
it is interesting about working with autistic kids...they do seem to know when we are having an off day! One of my reasons for waiting til summer to start treatment. I'm glad it seems like I have the time to do that!
Glad i found this message board too...good to be in a place where others are and have gone thru the journey I'm starting on.
I am (hopefully/was) a GT 3 too. Now 49, had it about 32ish years. I treated 24 weeks and had my last biopsy almost 5 years before TX. (starting viral load, 15.5 MILLION).
I agree with ET that Goof says. I was on weight based Riba and clear at 4 weeks. I think I could have treated for fewer weeks with the same result (I was clear 17 weeks post TX) but I was afraid to take the chance of stopping sooner.
Maybe Morgaina can answer this. But when I was on TX, I felt like I was mildly autistic (I'm not expert, mind you). I could only focus at one thing at a time (sometimes less than one thing...) and the rest of the world was a blur around me.
my husband was diagnosed with hep c 2 years ago genotype 3 doctor told him he needed treatment with meds he did have a ultrasound done they said there was scaring but they didn't recommend biopsy he still indecisive about treatment its been 2 years can any one help
I am new to this forum too. If you'd like you can read a little about my history on my profile. I have had three liver biopsys with no problems from the biopsy. I am so glad that I got the last biopsy done. All of my liver counts were normal and my ultrasound was normal too. The only symptom I was having was an increasing viral load. Had I not gotten the biopsy, I would not have known my liver had any damage at all. God Bless!- Tanya
I am also a 3a. I had a biopsy and am lucky to be stage 0/1 depending on the scoring system used. Likley I have had it 33 years and my viral load was 7.5 million.
I have been very active in learning all I can, in forming my decision to go ahead and treat.
You look young and are female- which are good indicators of success. If your weight is approprate or you are thin, even better. If you have low levels of liver damage- even better. Knowing you liver condition can help you and your docotr make decisions during tretment if need be.I advise to get the biopsy. It's no biig deal
I also agree with another poster- be sure your docotr has you on weight based ribaviran. Even though I went to a major research hospital, my doctor was going to do the minimal 800. I insisted on weight ased as the research supports better outcomes for 3A's on weight based and he did so. The higher dose gave me the anemia but will also be a major fator is I achieve SVR.
I am a school psychologist. I started my meds about 2 weeks before school was out. I had read that anemia if it set in usually occured at week 4 to 6 and could take a month or so to address approprately with meds. That is exactly what happened for me. I was tired and breathless in July but perked back up in August.
I will take shot 22 this week. It has been doable. I was clear at week 4. Be sure your docotr does a 4 week test. It is VERY important to know. RVR- means undetectable in your blood at 4 weeks- is highly associated with SVR. If not clear at 4 weeks it tells you and your docotr to consider longer treatment so you can clear.
Good luck. Look up your family medical leave policy at work. I did but i have never needed it.It helps to be aware of your benefits however. I have not told anyone at work and although a few have mentioioned i look tired, no one knows what is really going on with me.
clearing for 3 a's can be tricky. Too often the number have been mixed in reseach with the 2's- who clear much easier.
HI ALL. IM 22 YRS OLD AND I HAVE JUST FOUND OUT I HAVE HEP C GENOTYPE 3. I HAVE COUGHT IT AT QUITE AN EARLY STAGE. I USED TO TAKE DRUGS/INJECT WEN I WAS 18/19 THEN I MET MY LOVELY FIANCE (EX FIANCE) WE GOT TOGETHER AND HER CONDITION WAS IF WE ARE TOGETHER I AM NOT TO TAKE DRUGS AND STAY OFF THEM COMPLETLY.SO I WAS WITH HER FOR 2 AN A HALF YEARS, WE GOT ENGAGED I WAS DRUG FREE EVERYTHING WAS GOING GREAT FOR ME, THEN EVEN MORE GOOD NEWS SHE BECAME PREGNANT. I WAS SO HAPPY AN SO WAS SHE. WE THEN STARTED TO ARGUE REALLY REALLY BAD. HER PREGNANNCY HORMOANS KICKED IN AND SHE ENDED UP KICKING ME OUT. AFTER 3 DAYS OF BEING OUT THE HOUSE BEIN KICKED OUT, FEELING VERY UPSET AND DEPRESSED I WENT TO SEE AN OLD FRIEND WHO WAS HAVING A PARTY, WELL A SOCIAL GATHERING ABOUT 6 PEOPLE. LIKE A BLOODY DRUG DEN, AT FIRST I DIDNT LIKE IT THINKING WTF AM I DOIN HERE I HAVE BEEN CLEAN FOR YEARS AND I WAS QUITE DRUNK AND SO FOOLISH OF ME I ENDED UP INJECTING COKE THEN HERION ON THE COME DOWN...PROBLEM IS I SHARED A NEEDLE WHO MY MATE SED....IM CLEAN I HAD MY TEST ABOUT 3 MONTHS AGO IM ALL GOOD IM CLEAN. THE ******* LIER HE WAS!! TH NEXT DAY I WOKE UP AND THORT WOT AN IDIOT FOR SHARING A NEEDLE AND WOT AN ISIOT FOR GOIN BACK TO DRUGS!! LUCKILY I STOPPED THERE, IT WAS JUST THAT NIGHT. ABOUT 7 WEEKS AFTER I BECAME QUITE SICK LOST MY APPETITE AN LOST WEIGHT....I THORT IT WAS STRESS FROM MISSING MY EX AND WANTING HER BACK SO BADLY. I WENT TO THE DOCS I TOLD THEM WOT I HAD DONE THEY HAD DUN TEST AND THERE WE GO I HAD A FONE CALL TO GO TO THE DR'S ASAP. I WENT AND SHE TOLD ME I HAD HEP C BUT I HAD COUGHT IT VERY VERY EARLY. NOW THIS WAS AROUND 3 WEEKS AGO. I WAS LIVING IN LONDON AND I WAS ON MY OWN. MY PARENTS LIVE IN NEW ZEALAND O I THOUGHT ITS BEST TO GO TO NEW ZEALAND TO BE WITH THEM AND HAVE THERE SUPPORT. IM CURRENTLY WAITING TO SEE THE GUY WHO DEALS WITH HEP C AND WAITING TO START MEDICATION AND IM QUITE SCARED. THEY SAID ITS AN INJECTION ONCE A WEEK AND TABLETS DAILY AND IT WIL BE FOR 6 MONTHS AND HOPEFULLY IT SHOULLD BE GONE BY THEN. PLEASE BE HONEST AND TELL ME THE SYMPTOMS FROM THE MEDICATION, WILL IT HIT ME AS SOON AS I START THE MEDICATION? WILL I BE BED BOUND FOR 6 MONTHS? ANY ANSWER AND ANY HELP I REALLY NEED I ADMIT IM VERY SCARED....I DONT EVER GO ON THE INTERNET MUCH BUT ONLY TO CHECK MY EMAILS SO PLEASE PEOPLE IM SEEKING ADVICE AN HONESTY I REALLY NEED EVERYONES HELP..... PLEASE PLEASE EMAIL ME ON ***@**** and please can u giv me as much advice as possible thank you. once again please be honest if the symptons are very very very bad then please tell me. thank you all and if any of u have read this plz plz plz plz email me as i need anyones advice, remember my email is ***@****, my name is JJ please help guys an girls thank you all
First, I might say that this is an old thread/topic (2006) and some may not respond because it is so old.m You might get more responses if you open a new topic and copy and paste your questions and concerns into your new topic.
As far as the side effects of the drugs, they vary. It is true the literature lists a lot of bad side effects. Not everyone gets the bad side effects and even if you get some side effects, they may not be bad.
I am 4 weeks into triple therapy (Interferon, Ribavirin and Incivek). So far mu side effects have been mild. I don't feel great, and I surely am not going to run a marathon, but my side effects have not been bad. (Some itching, some rash, some hemorrhoids, some rectal pain, fatigue, slight headaches, body aches, general malaise, and probably something I am forgetting.) The point is, other than the rectal pain which lasted about 5-6 days, I have had rather mild side effects. (The rectal pain I believe was from the Incivek - I would have to check the package insert. You won't be on Incivek.)
Others here have had some rather serious side effects but most side effects can be handled and managed. One has to keep in mind that the consequesnces of not treating can be negative. I am no expert, but I believe, being a Genotype 3, you have a very good chance of clearing the virus with treatment, a much better chance than those of us with Genotype 1.
I am sure the Hep C specialist you are going to see will do some further testing and will then advise you on the best course of treatment. He/she can also answer any further questions yo have.
Incidentally, your reaction is not uncommon. Most of us were freaked out and scared when we were first diagnosed. I thought I would be dead within a year. However, once I became better informed about Hep C and the treatments, I am now very optimistic and hope to be cured. It helps to learn as much as you can about the virus and about treatment.
I wish you the best of luck. (If you don't get more responses here, start a new topic and ask your question under that topic.)
Hello everyone.This is the first time I have writen on here .I dont understand pcs much so hope this posts.I was diagnosed 6 months ago with sirosis and hep c type 3.My liver is now stable enough to start with the treatment ,and I begin nxt week with the interferon injections and the rabivirin.I dont mind sayin it ..I am petrified.My dr said I have a 85 2 90% chance of it being cured which will give me the strength to get through this .I have read a lot of your posts and you talk about all the different things they look for when you go for blood checks.I dont realy understand this at the moment ,but guess I will learn as time goes on .I would like to think I am a positive person,so with the help of my man and my son I will get through this.
You have posted at the end of an old thread. It would be better when you ask a question to start your own thread by going to the orange""post a question" area in the future so more members will see it :)
In the meantime I have linked for you some very up to date info on HCV Geno type 3 and the therapies for such(below) including the success ratwes for this genotype
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