People with genotype 1 - was it difficult to convince your Dr. to treat with interferon. My doctor has said my test results are good and the best thing to do is right now is nothing. No treatment will end my relationship, not to mention that I am not anxious to wait until my liver is damaged.
I am geno 1 and was at first told the same as you...50% chance of tx working..why not wait until later..in 5 years time the chances might be greater...What I was scared about is this...I am currently stage 1 fibrosis, viral load high (10 million plus, not sure of exact amount) what if in 5 years time I am stage three and my viral load is even higher? I would then be considered harder to treat also. My LFT's have been consistently high for the past 3 years and I was feeling quite unwell, not managing working full time and family life..There is a lot to consider when deciding to start tx...I am into week 5 of tx and at times think...."what the hell am I doing this for?" and at other times think "it will be worth it if it works"!!! Good luck with what ever you decide..its such a subjective decision to make
Hi Ladhil, I'm 1a, was diagnosed a little over three years ago and was G3/S2 on biopsy. My doc at the time (a gastroenterologist) recommended treatment. I've been under the care of very good hepatologist for the past year. Because I am 1a and did not do well on the standard treatment three years ago and had to be pulled on account of complications, we are doing the "watchful waiting" approach for now (meaning we are waiting for better treament options OR for signs of worsening liver disease - whichever comes first - to treat.)
I echo kalio on the biopsy. You need to know what shape your liver is in as far as the degree of inflammation and amount of fibrosis. If you have had a biopsy, and it showed mild (even moderate) damage, some hepatologists (bearing in mind they are taking your entire medical history into account) might recommend that you wait.
If you haven't had a biopsy, then definitely ask the doc to order one. If he won't, get a second opinion. If, however, you are already under the care of GI doc (preferrably a hepatologist who is very knowledgeable on current treatment and future therapy) I would consider this doc's suggestion (or at least think on for a few months.) The reason I say a few months is -- there is going to be some data released soon (within a month or two) on a very much talked about protease inhibitor in trials right now called VX-950. This information could be important for all 1a's and help guide treatment decisions for docs and patients.
Keep in mind, Hep C is a very slow moving virus in almost all cases unless you are abusing alcohol / drugs.
Speak to the specialist about the biopsy. If you do decide to treat, knowing your true liver status is important information in deciding how LONG you will treat. I agree with you, it makes sense to undergo treatment prior to the situation becoming critical or waiting until damage has progressed and you are already sick. Also, progression of damage lessens your chances of the treatment working.
Treating is a very personal decision. Some doctors advocate every patient treat, some do not. There doesnt seem to be a consensus on the topic. Im with you, treat as soon as you find out you have it and at least try to eliminate it. Especially since it puts us at a much higher risk for other diseases and illnesses like diabetes and lymphoma to name a few. Without a biopsy you do not have a true assesment of your liver status judging only by ast/alt readings and how you feel, but if you decide to treat, many doctors then feel a biopsy is unnecessary.
That isn't true, the virus can also act rapidly in some people who are NOT abusing drugs and alcohol. Many factors play into it, genotype, your own genetics and immune response to the virus, when you contracted the virus ( faster moving if contracted over the age of 40) how you contracted it, how much virus you were exposed to, your nutritional status and many more factors.
Use of drugs and alcohol is ONE way of enhancing or escalating the virus but there are plenty of other factors, some people have never used alcohol or drugs and have a rapid viral progression.
Thank you very much for responding to my question. The doctor who told me to do nothing is not a hepatologist. I have an appt with a specialist next month. The lab results indicate my liver is in good shape, which is why my doctor suggested I not bother with a biopsy. If my liver is in good shape and the viral count is low, wouldn't it be a good time to get trmt? It seems better than waiting until things get bad.
YES,THE VIRUS IS SLOW MOVING IN MOST OF US...37 YEARS FOR ME TO STAGE 3 AND I ABUSED ALCOHOL AND DRUGS. IF YOU KEEP AND EYE ON IT YOU SHOULD BE SAFE WAITING A YEAR OR TWO. YES IT IS HARDER TO TX WHEN OLDER BUT NOT 1 OR 2 YEARS AND IF THE DRUGS ARE MUCH MORE EFFECTIVE IT SHOULD BE EVEN EASIER TO CLEAR THEN.. SEVERAL MONTHS MAY BE OPTIMISTIC ON VX950 BUT 1 OR 2 YEARS SHOULD TELL. THERE IS VERY HIGH HOPES ON DRASTIC IMPROVEMENTS IN SVR AND SHORTER TX TIMES. IF I COULD HAVE WAITED I SURE AS HECK WOULD HAVE.
Hi! It's so nice to meet you! Wishing you the very best on the results of your upcoming viral load! (I get really excited when I meet someone who's in the trial.) Please keep us updated. Anything you hear and can share will be so appreciated.
There are some prot. and poly. inhibitors that are looking promising (but none as promising to me as the VX.) I also think Vertex assigning a tradename is a good sign.
This is kind of exciting to read: (excerpt)
(*) In September, Vertex announced that it has successfully completed the technical development work for the Phase 3 and commercial formulation of telaprevir (VX-950). With this formulation, the dosing of telaprevir (VX-950) is planned as two 375 mg tablets to be taken every eight hours. Vertex has begun to manufacture drug substance registration batches and all registration batches are anticipated in the first half of 2007. Vertex expects to make a significant investment in the commercial supply for telaprevir (VX-950) in 2007, subject to continued progress of the drug candidate.
(*) Five abstracts have been accepted for presentation at the 57th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD) in Boston, October 27-31.
LOL on having "skin" in the game. I know someone else who does, too. 2007 is definitely going to be an exciting year as far as what future therapy might holds (and 1a's could sure use some good news.) I think they might be getting some, but... it's still to be seen.
thanks,i get my 6 month results next month and am encouraged about vx950 if i bomb out. i read they are going to phase 3 soon and it will be pushed by the fda as fast safely possible. there will be about 4,000 volunteers and i hope to be one if needed. this stuff sounds like light years ahead of just peg/riba.
Lad, rest assured that the hep c virus is very slow moving in almost all cases. The fact that your liver tests are OK now is also a good sign, too, but that alone does not tell the amount of inflammation or fibrosis. If your doctor does not want a biopsy, tell him you would like one so that you can make a more informed decision about treatment. Some docs are not doing biopsies as much as they used to, but it's still pretty much the standard of care when diagnosed Hep C (and geno 1A.) Ask him why he doesn't want one. My liver enzymes have always been normal (and I was Grade 3 Stage 2 on biopsy). If he still doesn't want one, then I think you will probably be better off under the care of a hepatologist (or at least get to a GI doc who will do a biopsy). Start calling around if your doc won't do it for you. Call the major medical facilities (academic facilities) in your area / state. A baseline ultrasound is not a bad idea either. If I were you, I wouldn't worry too much about what your viral load is right now.
The clinical data I'm referring to that will be released in mid Dec is on the VX-950 (Telaprevir), and it will be from the Phase II PROVE study that is currently underway. It will provide info on safety and efficacy that will matter as far as what we will learn about future treatment with this drug. Many are eagerly awaiting this data. Phase III, of course, will be "the real deal." No one knows yet when or if it will make it through the trial, but it is very promising so far. It is expected to be given in combination with the standard treatment (the Peg and Rib). It could also mean you would have a shorter treatment duration.
Learn all you can on this virus and the standard treatment (and future treatments). There is a lot of information out there, and you are going to get many opinions from reliable sources (and some not so reliable.) In my opinion, right now it's pretty much a **** shot with treating geno 1A - 50/50 chance, if that. That's not very good odds if you can wait and improve those odds. The standard treatment is not without it's dangers or serious side effects. Granted, some do fine; some don't. Find out about a biopsy and then make your decision. If you've got mild damage on a biopsy, try to rest assured you have plenty of time to make your decision.
When I was first diagnosed with HCV (1a), and after my first biopsy (in 2003) I was told I was 'on the fence' for needing treatment.
After my doc & I discussed my very active lifestyle, traveling, being a newlywed etc, I decided I didn't want to sacrifice a year out of my life at that time.
In 2005, I had my 2nd biopsy & found that the virus had increased, and it was time to consider tx. I talked to my husband, and we decided together that we could deal with it all this year..so I started treatment. I am now on week 13/48.
We were prepared for me not to be able to "do the things" we usually do..traveling, snowmobiling, motorcycling, and alot more of the really active things we usually did. It is definately getting old..I get tired of just hanging around on weekends to rest, but I'm putting one foot in front of the other every day, and brings me one day closer to finishing it.
Best of luck.
Not sure we will see anything formal on the Prove 1 trial in that short time frame.
I'm among the earliest dosing group in the cohort. Will be unblinded in early December, at which time I should get my VL results from the start of the trial. It could be two months before the entire cohort is unblinded. Not sure how long it will be before press releases containing initial results will hit. Even so, these results were taken during the dosing phase of the trial. My guess is that we will see some very fast clearances and sustained UND during dosing. The post-dosing follow up results to quantify SVR will be the big news, but that wont be until mid 2007 or so.
I'm completely with you on the promise of VX and the polymerase inhibitiors soon to trial. I've got skin in the VX game :-)
That said, 2007 will be the definitive year for results. Prove 1 will be in, Prove 2 [VX +Inf - no Riba] in Europe will be in, and its possible that the Prove 3 trial for non-responders in the US will provide some early data as well. Exciting times indeed.
I'd get a second, third or fourth opinion. I had my first bx in 1998 and it showed minimal damage - stage 1. My GI suggested I treat and give it "the old college try." Lasted 2 mos on Intron A/Ribaviron. After that I lived the healthy life and did all the herbs thinking I was going to be fine. In 2003 I had my second bx which showed I had jumped from a level 1 to level 3 fibrosis in just 5 years. I was really surprised because my labs always came in pretty good (ALT 40-60) and I had a low viral load.
I did 48 weeks of Peg/Copeg and so glad I did. I'm 2 years post tx, former 1A and still undetectable.
Another thing about doing nothing. With the virus in your system, your immune system is constantly fighting the disease. There are risks of developing other health conditions if you don't treat the hep.
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