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genotype 2, does anyone else have this?

Hello;

I think I contracted this in 1979, when I was only 17 and tried to be cool.  Anyway, upon giving blood this year, I found out I have Hep C, Type 2B.  I am having a biopsy done after Christmas and beginning treatment in January.  I am a full time student.  I don't work right now, but my studies are very very demanding.  I am very worried what to expect.  My doctor says that I should only need 26 weeks of treatment for type 2, as type 1 is much more difficult to treat.  Does anyone here have type 2????  I have read that less than 10% of people who have Hep C, have type 2 as this is not common in America. My dad was a Veitnam Vet, and heard this is where it came from.  I either contracted in 1979 or from my Dad?  Who really knows.  I just want to get rid of this stuff. What can I expect for the first 2 months or so.  My doctor recommended treating with a shot you inject only once a week and it can make you sick for a day or two?  Does anyone have any experience with a once a week shot? Oh, my liver function test are all within the normal range and my count is 5,000,000.  I think this is on the high side, but really don't know.I don't have the names of the meds yet, this is happenening so fast. Please respond, any advice is appreciated.
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Avatar universal
Hi everyone!
I just found out I have Genotype 2, and have probably had it for 26 years which was when I could have been exposed. I'm on Coumadin so my Doctor won't do a Liver Biopsy. However, he is going to have a Radiologist do whatever it is they do to examine the liver, and I'm told that they can determine the Stage from that.......CT Scan? or MRI, don't know.
I have had no symptoms except I tire easily, the "fatigue factor". I can walk briskly without getting short of breath, but anything strenuous and I'm breathing hard.
I have also had a couple of disorientation episodes, brief each time, and 4 or 5 months apart.
The Doctor is almost positive that he will recommend treatment, but I'm really afraid because of all the horror stories out there. Has there been any positive results from just supplements like Milk Thistle and antioxidents? Also, I can't miss any work.
Also, I'm still having a cocktail and two glasses of wine each night. What I read seems to be contradictory about that. Most Doctors surveyed say that moderate alcohol intake is OK....???
I am 64 and have an artificial Aortic Valve. Side effects say that it could effect the heart.
Is Pegasys the way to go if I must treat this?
Helpful - 0
Avatar universal
Hi everyone!
I just found out I have Genotype 2, and have probably had it for 26 years which was when I could have been exposed. I'm on Coumadin so my Doctor won't do a Liver Biopsy. However, he is going to have a Radiologist do whatever it is they do to examine the liver, and I'm told that they can determine the Stage from that.......CT Scan? or MRI, don't know.
I have had no symptoms except I tire easily, the "fatigue factor". I can walk briskly without getting short of breath, but anything strenuous and I'm breathing hard.
I have also had a couple of disorientation episodes, brief each time, and 4 or 5 months apart.
The Doctor is almost positive that he will recommend treatment, but I'm really afraid because of all the horror stories out there. Has there been any positive results from just supplements like Milk Thistle and antioxidents? Also, I can't miss any work.
Also, I'm still having a cocktail and two glasses of wine each night. What I read seems to be contradictory about that. Most Doctors surveyed say that moderate alcohol intake is OK....???
I am 64 and have an artificial Aortic Valve. Side effects say that it could effect the heart.
Is Pegasys the way to go if I must treat this?
Helpful - 0
Avatar universal
Hi everyone!
I just found out I have Genotype 2, and have probably had it for 26 years which was when I could have been exposed. I'm on Coumadin so my Doctor won't do a Liver Biopsy. However, he is going to have a Radiologist do whatever it is they do to examine the liver, and I'm told that they can determine the Stage from that.......CT Scan? or MRI, don't know.
I have had no symptoms except I tire easily, the "fatigue factor". I can walk briskly without getting short of breath, but anything strenuous and I'm breathing hard.
I have also had a couple of disorientation episodes, brief each time, and 4 or 5 months apart.
The Doctor is almost positive that he will recommend treatment, but I'm really afraid because of all the horror stories out there. Has there been any positive results from just supplements like Milk Thistle and antioxidents? Also, I can't miss any work.
Also, I'm still having a cocktail and two glasses of wine each night. What I read seems to be contradictory about that. Most Doctors surveyed say that moderate alcohol intake is OK....???
I am 64 and have an artificial Aortic Valve. Side effects say that it could effect the heart.
Is Pegasys the way to go if I must treat this?
Helpful - 0
Avatar universal
Hi everyone!
I just found out I have Genotype 2, and have probably had it for 26 years which was when I could have been exposed. I'm on Coumadin so my Doctor won't do a Liver Biopsy. However, he is going to have a Radiologist do whatever it is they do to examine the liver, and I'm told that they can determine the Stage from that.......CT Scan? or MRI, don't know.
I have had no symptoms except I tire easily, the "fatigue factor". I can walk briskly without getting short of breath, but anything strenuous and I'm breathing hard.
I have also had a couple of disorientation episodes, brief each time, and 4 or 5 months apart.
The Doctor is almost positive that he will recommend treatment, but I'm really afraid because of all the horror stories out there. Has there been any positive results from just supplements like Milk Thistle and antioxidents? Also, I can't miss any work.
Also, I'm still having a cocktail and two glasses of wine each night. What I read seems to be contradictory about that. Most Doctors surveyed say that moderate alcohol intake is OK....???
I am 64 and have an artificial Aortic Valve. Side effects say that it could effect the heart.
Is Pegasys the way to go if I must treat this?
Helpful - 0
Avatar universal
After relapsing I spoke to several researchers and was amazed at all the little facts that slip through the cracks without ever becoming common knowledge and I was also surprised to see how much they didn't know.  One thing that a few researchers told me is that Pegylated is not more effective than Rebetron for people going in with high viral loads.  

As for the dosage:  I think that few people get individualized care.  After I relapsed my new doctor looked at my blood work during TX and said I could have stood much higher doses because my platelets didn't drop and my WBC, RBC counts dropped very little nor was I horribly depressed during TX.  The thing is that I am a member of a very large hmo and their appoach is one size fits all.  
Thanks again for your informative replies.  You're a great resource on this forum and we're lucky to have you. Travis
Helpful - 0
Avatar universal
Hi Tess Marie - I am also in the Orlando FL area and have done quite extensive research on what you are looking for.  If you would like you can email me at ***@****  I will be more than happy to share my info with you.
Helpful - 0
Avatar universal
The 10% comes from a trial which only looked at retreatment of patient (with Peg Combo) who had failed traditional therapy (interferon three times a week with or without ribavirin).  This was not dependent on genotype.  It is thought that the numbers might actually be worse in group of patients who your retreat with a Peg Combo who previously failed a Peg Combo in the past.  

Now, with that said...If a patient had significant dosage reduction (because of depression or anemia and at that time we werent really comfortable with Procrit), you could make an arguement for retreatment while maximizing doses with growth factors (Procrit..) or antidepressants...

For patients who have never been treated:
Genotype 1 across the board SVR is ~50%.
Genotype 2/3 SVR is ~85%

There is currently no large database available to support longer treatment means longer SVR but this is being looked at.

GI.PA

GI.PA
Helpful - 0
Avatar universal
Thanks very much for the detailed reply.  I had also heard that chances of SVR with re-treatent were slim but I thought they were much better than 10%.  I have also read that longer treatment has not improved SVR's by more than a few percentage points.  Even the drug companies who have the most to gain from saying "treat longer" say that longer TX does not help much.  Why then do you think that so many doctors are exposing their patients to the greater risks of extended TX without a much increased chance for an SVR?  Travis
Helpful - 0
Avatar universal
This question is for all who have completed interferon therapy. I am wondering if anyone is or has experienced extreme muscle or joint pain after treatment. It seemed to disappear when treatment ended & I was able to walk without stiffness & now it's back? Is anyone on anti-oxidants and if so, how your body is reacting to them. I hope everyone had a great Thanksgiving & it's for sure we are all looking for a GREAT NEW YEAR!
Helpful - 0
Avatar universal
The problem is that we dont have much data on Peg-Rib failures.  Our data comes from monotherapy (interferon alone) or Interferon (three times per week)plus ribavirin failures who are retreated with Peg-Rib.

This is compounded by the fact that we use to think people would spontaneously combust if you got more than 800 mg of Rib in a day.  We now know we can push this (and should) up to 1400 mg a day in those larger patients.  

I think some docs treat longer (say for 48 weeks for a genotype 2/3) because in our heads, it should work better.  Unfortunately, the data simply isnt there yet for the standard of care.  Right now, I would only treat longer than indicated if someone had a significant dosage reduction during the first 12 weeks..and I dont have any data as to why.

This all gets a little tricky...welcome to the "art" of medicine.

GI.PA
Helpful - 0
Avatar universal
i am on rebetol 1000 mg a day and peg intron 120....i almost didnt start the peg intron because of reading that pegasys was better...but i had all the meds and ya know what...i just did it. I am doing ok....i will be checking my labs just before Christmas...that will be my halfway mark.We'll see.....
Helpful - 0
Avatar universal
I have type 2 also am on week 9..........just got out of the hospital with a pulmonary embolism...mds all feel this was unrelated to tx. They continued all my meds and shots while i was in the hospital. I am home now....feeling washed out from embolism but treatment sides are less noticeable now.........
Helpful - 0
Avatar universal
Does that chance of SVR of 10% apply to all people who re-treat or just those with genotype 1?  Does the 10% rate apply to other genotypes or those that do much longer TX.
Helpful - 0
Avatar universal
I appreciate your comment and definitely did not mean to sound so harsh. I think the fact that I had no scheduled appts. with my Doctor & everytime I phoned him I received the same answer from his PA, "He says that he has never heard of this side before," was very frustrating. I received my last VL responses from his PA, with, "the Doctor says their is nothing else out there for you, at this time." This to me was like throwing fuel on the fire. Enough of that, as I stated I am wide open to any treatment & for the present I have started the anti-oxidants, as I do not feel that they will do any harm. I am doubtful that they will cure the disease, but possibly strengthen the remaining live cells. I will continue to look for additional Doctors and research programs. I live in New Smyrna Beach, but work in Orlando, so if anyone knows of a good GI or Hepatologist, please let me know.
Helpful - 0
Avatar universal
I am a 2B currently on TX did shot #13 last night. You can do it, it is not that bad. We have the best chances of making it compared the the 1's and 3's. I'm working 4 days a week. I take Monday's off because I have the time to use and I get some extra sleep when the meds will let me. Currently I'm having some sleeping troubles, rage gets me once and awhile, fatigue, and general over-all feeling of yuk, oh must not forget the itching lol. Just had my PCR test drawn on Weds. I hope to hear the results in a couple of weeks. I'm a VietNam vet. Had the slew of shots in the long line with the air guns several times. I have not been on-line for some time now shame on me. This is where I need to be during this time. Everyone here is wonderful. I was grade 3 stage 4 on my biopsy, VL was 1,080,000 I'm 51 year old male.
Helpful - 0
Avatar universal
We...****. That is NOT good news. What is it with you folks in Gainsville? Redman is from around there and his story is almost identical to yours. Responded early on but then the load went back up during tx. I'm REALLY sad to see this happen to you.
What you do now really depends on your whole situation. I forget your specifics so bear with me here. You are officially a relapser. This is good in that your virus DID show some response to tx. This means that there is a remote possibility that you could be treated more aggressively and MIGHT still beat the Dragon. But the odds are pretty remote. So, what you do now is pretty much dependent on how bad off you are. If you are at Chirrosis level then you may have to make some tough choices. If not, it gets a bit fuzzier to decide what to do. If your original biopsy showed some major damage I would seriously consider getting another to see where you stand now. There is some good evidence that 48+ weeks of tx can significantly lower those damage levels. This would give you some breathing room.
If you didn't have major damage to start and just did tx because you hated having Hcv(like me) then I wouldn't go through this again with the Pegylated interferons. The risks just outweigh the possible benefits at this point. The possible long-term damage from these meds is very real and getting more aggressive just increases that risk. Remember that most people do NOT actually die from Hcv so the odds are in your favor there.
There are some really promising new drugs(protease inhibitors) in the clinical stages now that are not related to the interferons at all. If there's any way possible I would wait for these to come out. Monitor your numbers and biopsy every 4-5 years to keep track.
In the meantime, living a healthy lifestyle(sigh) and taking your antioxidents can't hurt and may even help for awhile.
As Erin pointed out, I wouldn't just discount ALL gastros based on a bad experience with a couple. I think it just depends on how many Hcv people a doc treats and how open minded they are to the new things. Some gastros really focus on Hcv and some don't. Hepatologists are the same way in that reguard. You need a doc that really knows Hcv at this point. He can advise you on better tx for relapsers, ongoing studies that you might join, and/or new treatments as they become availiable.
Sit back now and let your body get back to normal. I'm always around somewhere's. If you need to "talk" you can always e-mail me at ***@****  
Just don't go out and kill Mickey Mouse yet. I'm planning a vacation to Disney maybe next year..............
Helpful - 0
Avatar universal
I've been taking an anti-oxidant/vitamin product the past couple of years that contain all of the supplements (plus more) that you mentioned in your post.  I had ran the list by my Dr and she didn't see any problems with any of the supplements.  I usually don't throw product names out on posts but if you
Helpful - 0
Avatar universal
You are officially termed a relapser.  

There is no evidence that retreatment with any Peg + Rib combo would be of benifit.  The risks definatively outweigh the benefits (less than 10% chance of sustained response).

Dont knock all GI's..There are those of us that are very up to date, treat hundreds per year.  Keep looking but only focusing on hepatologist means you will limit yourself to a few, high demand, very busy docs.

Just my 2 cents.

GI.PA
Helpful - 0
Avatar universal
Hey Indiana, glad to see your post. You have reassured me several times & I really respect your opinions. After completing 48 wks. of Peg-Intron / Ribavarin on 8/22, I have been told I am a non-responder. I started treatment 9/02, biopsied & 1st. VL lab showed 1M copies, 600,000 IU/ML. At 12/02, VL showed {135 copies, {50 IU/ML. After finishing 48 wks., my VL on 11/03, showed 3,290,000 IU/ML & 6.52 Log IU/ML. I have spoken to U. of FL., & they tell me I am a relapser & not a non-responder? Anyhow, I have spoken with a retired Doctor who has suggested I try anti-oxidants at this point. I have researched as much as possible & I do not feel that these will do any harm & only strenthen the live cells. They are as follows: Milk Thistle, Selenium, Co Q 10, Vit. E, Grapeseed Extract, NAC,L-Methionine, Lipolic Acid. Have you heard of anyone taking these? I am still looking for a Hepatologist in the FL. area, I am definitely not going back to a Gastro. They just do not have the knowledge to treat this disease. If anyone has any other suggestions--I am very receptive to all treatment. Gainesville"s answer was Pegasys, which I am not ready to put my body through again at this point. I hope you all had a great Thanksgiving & we really do have something to be thankful for, for we have all found this forum. God Bless all, looking forward to hearing from you all.
Tess Marie
Helpful - 0
Avatar universal
I was a 2b.  Transfused in 1979.  Dx (diagnoised) 9-12-2001.

Started tx(treatment) May 2002.  Cl (cleared the virus from bloodstream) before the end of May 2002.  Did 24wks shots 3X wk, daily pills.

I was really sick and given up for dead b/c transplant was not an option.  And here I am, 26mo later, virus clean and never feeling better.

Now, I'm in my 50's and really had no real problem w/tx or lifestyle changes.  The sx (side effects) were totally managable. I think b/c I really, really wanted to be successful, I never let the thought of failure enter my mind.  The sooner you start, the better.  Test as early as possible to see if tx is working.  I tested @18 days and had already cl'ed.  The rest of tx was a breeze since it was only mop-up.
Helpful - 0
Avatar universal
i am/was(?)   type 2b as well.   tx. was  hard for me. and i have the ultimate respect for those doing 48 wks.  i did 28 wks. couldnt take much anti depressants due to bad reactions to them.   i cleared at 16 wks and was still clear at 24 wks.  will get pcr in feb.  your viral count is fairly high, mine was 5 million. but ive heard of much higher.  but if your liver enzymes are normal thats good. mine had been high for years.  they have been normal so far since treatment.
   have heard the same thing that 2b originated in vietnam.  
    id recommend getting on good anti depressants before you start treatment.  you will do well im sure.  i feel fortunate to have this genotype- wer're lucky that way!
Helpful - 0
Avatar universal
I see by your name that you're worried. This is normal. The more you learn about this the less worried you will become.
If you've gotta have Hcv then type 2 is the best of the bunch to have. I would've killed to be a type 2. You have the best response rates and get to do the shortest duration of these meds. Your "odds" are over 80% that you can cure this.
I did 50 weeks of Peg/Intron and managed to work most every day. I think school would be hard but not impossible. Just don't take on too big of a load for that semester. Several folks here are teachers and still managed to do this. Concentration will be a bit rough while on this but you will just need to focus a little more.
Here is a copy of an old post from Majneni that has some excellent sites.....
  Hi,
Sorry you're dealing with Hepatitis C, but welcome.
Relax, this is a slow moving disease, and there's a lot you can do. Make sure you have a good doctor (preferably a gastro-enterologist or hepatologist) to work with you. You're going to need this doc for a while, so make sure you have good communications. Good luck, and come back here with your questions and comments.
Here are a great bunch of web sites where you can get informed.
Don't go crazy: the information on these web sites should be the same, so read just enough.

Get the basics on the FAQ's of these general HCV sites:
http://www.liverfoundation.org/ (American Liver Foundation)
http://www.natap.org
http://www.hepnet.com/hepc.html
http://www.cdc.gov/ncidod/diseases/hepatitis/c/fact.htm
http://www.carbonbased.com/cbcblood.htm
http://www.niddk.nih.gov/health/digest/pubs/chrnhepc/chrnhepc.htm
http://www.battlinghepc.com./
http://www.hepcassoc.org/links.html (many links)

http://www.themedicineprogram.com/info.html (helps pay for meds if you can
Helpful - 0
Avatar universal
Yes there are several folks who have type 2, you can go to my web page and see how many do, I think it is kinda rare.  But it is good cuz it is statistacly easier to clear the virus. And yes we on treatment are all taking a once a week shot and an antiviral pill everyday (several of them). Scroll down and read everything you have time for and you will learn a lot about this disease and its treatment.  the janis7hepC site is  very helpful, tells all kinds of things newbies have questions about.  Some of the stories are old so dont put much salt in them. Like liver biopsies, they are a breeze these days.  And here are the links I can direct you to:

http://www.janis7hepc.com/index.htm

www.geocities.com/auggieaz

I guess some folks can do the treatment (tx) and keep up a normal life, work, school, raise kids etc...I hear about 50% do, but there are 25% who have to take a lighter load, and 25% who cant work due to the side effects.  The main symptom is fatigue.
Well best to you and keep checking back, there are lots of very nice and knowledgeable folks here!
Helpful - 0
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