I have a question that I haven't heard anybody comment on. Has any geno 1's that have gone undetected at week 4 stop tx early and remained undetectable. I'm considering tx and the thought of 48 weeks of tx just doesn't seem possible. I read this article
It suggust that if you're a "super-responder" you may only need to tx for 24 weeks. Now I don't know if I will be a "super-responder" but it appears that 20% of the patients were. I think I would try it for the 4 weeks to determine weather I was in that catigory, I don't know what makes somebody a super-responder, but I am female,low vl, and not a heavy drinker so I figure I have as much of a chance as anybody. I do see that the pcr that was used wasn't the most sensitive( which of course I would request)but I would like anybody else's insight on the topic
Good point on "muted shade of grey" or as we liked to say in the 60's to use the words of Procal Harum "A lighter shade of Pale" :)
Still, after re-reading the abstract, I can't tell for sure if the fibrosis was a pre-tx predictor or included with the RVR group. BTW , they also list "low ALT" as a neg predictor. I've seen this before but on its face doesn't seem to make sense?
Mom - This is a controversial subject, to say the least. These days, we're seeing a tendancy towards truncated treatments for those who clear the virus early, but not everybody likes that idea.
Have you had a biopsy? Higher levels of fibrosis count against you. So does fatty liver, being overweight, higher viral loads, and a number of other factors. Or, for a more positive way of saying it - the absence of those condition goes in your favor.
I would want a Doc who was agreeable to the plan from the get-go, if for no other reason than having all cards on the table for mid-treatment decision making. Also, if you can't dig up a competent hepatologist who thinks it's a good plan, it probably ain't a good plan.
You'll hear a lot of comments on this, I'm sure. Best wishes to you on whatever you decide. Be careful listening to anyone with goofy in his name.
Misty - Will the dude not re-up your prescription for 4 more measly weeks? With all you have going for you - I would like to think you're OK - and might be anxious to stop were it me. But if you don't want to stop, as long as you aren't placing yourself in harms way - I say the dude should follow your wishes. And you can tell 'im I said so, too :-p
I can give you a bit of info while we wait for Jim.
These tests usually, if not always, get sent out to be processed. The processing place might run one batch a week - true even if they're not sent out I suppose. So, if you get it in right before the batch is run, you could get a much faster result. I had a Quant. PCR come back last week in a few days (Thurs to Mon) - accurate to < 50 iu.
Sometimes the Doc might order two tests - one to quantify the bugs, and another to qualify whether there are any bugs to quantify. I had two done last month and the Quant took one week and the Qual took a bit longer. Sometimes the back-to-back tests are run under the umbrella of one test. I believe the heptomax does a Quant PCR, followed by a Qual TMA if the PCR was neg.
My guess would be that there's nothing to read into the quick return. It probably means you caught a batch ready to be run. It could mean they chose not to do the second test because the first showed virus - or the second test is still pending, who knows.
I would try not to sweat it - but that's easy for me to say. Why your doc won't release the results is another issue. But you didn't ask about that so I just deleted my rant on the subject :) <small>it was right here but now it's gone</small>
Often you can infer positive response if you've had improved ALT/AST measurements. Best of luck.
I agree with Goofy that the so called "short-course" treatments have their controversy. That said, EVR(early viral response), RVR (rapid viral resposne) and now what will soon probably be called "SVR" (super viral response) -- whoops can't do that, the initials are taken. :) --- OK, that's why I guess they're called "super responders." --
Anyway, there seems to be a long tradition of studies showing that earlier viral responses is a positive predictive factor for SVR, starting way back with the 2-log drop at week 12 formula. I see these newer studies, if/when they pan out, as a logical extension of that.
Where I differ from Goofy's statement is in the role other factors such as fatty liver, being overweight, higher viral loads, degree of fibrosis, etc. play.
From the way it was explained to me by a well-repsected hepatologist, the above are *pre-tx* predictors, meaning one can get SVR indications either yea or nea based on these and other factors.
However, once treatment actually starts, it's the EVR/RVR that overrides any pre-tx predictors in terms of SVR. That said, some of the studies mitigate the super-response with additional factor such as pre-tx viral load or AST, so apparently it's not a lone override but one with a piggyback component.
So far, for example, significant fibrosis still remains a negative pre-tx predictor for SVR, but has not be shown to be a reason for a super responder not to take a short-course treatment, at least not yet based on a negative week 4 PCR.
That,that said, until more studies are done anyone with significant liver damage probably should give at least a little pause to these studies because they have less wiggle room and more at risk with their liver.
But personally, if I had little or no liver damage and chose to treat, I'd seriously consider the shorter-course treatment which would expose me to less drugs over less time. It's back to the ole' "risk-reward" equation that Goovy and others talked about at length in another thread.
Thanks for your comments. I was justing hoping somebody actually only went 24 weeks and remained svr. The thought of taking such intense drugs for sooo long scares the h*** out of me
but there's no time like the present. I'm not getting any younger (40 years young) and I'm in good health now, who knows what 3 or so years may bring. Thanks again. I'm still on the fence on weather to treat or not.
I'm hesitant to venture a guess on what the timing of your results mean unless I knew the exact test and your location. If for example, the test was Heptimax, the full-test can take a little over two weeks because it's done in two-parts. The PCR portion is usually available within a week and the TMA portion which I believe is done in California, takes at least another week. Keep in mind that they don't do the TMA portion of the PCR portion shows viral load greater than 50 IU/ml. So in this specific instance, waiting longer is better.
In your case, and please forgive the cliche, it is what it is and you'll know in a few days. I would, however, have a talk with your doctor regarding test results. There' absolutely no way an adult should have to wait for their own test results pending an office visit. There's the phone, fax, mail, etc.
Again, the above just relates to Quest's Heptimax and your test procedure/timing may be very different.
In conclusion, the authors write, "In HCV-2 or -3, the HCV RNA status after 4 weeks of therapy may guide treatment duration. Short treatment duration is effective in both HCV-2 and -3 patients with RVR, <b>but those with severe fibrosis are less likely to experience both RVR and SVR, and more frequently relapse off therapy.</b>"
Virologic relapse was observed in 29/274 RVR patients (10.6%), and was more frequently observed among those with low ALT levels (14% vs 5%), high viremia (14% vs 6%), and severe fibrosis (18% vs 8%).
Gooof quorted: In conclusion, the authors write, "In HCV-2 or -3, the HCV RNA status after 4 weeks of therapy may guide treatment duration. Short treatment duration is effective in both HCV-2 and -3 patients with RVR, but those with severe fibrosis are less likely to experience both RVR and SVR, and more frequently relapse off therapy."
As often happens with the medical papers -- especially the abstracts -- the writing is confusing -- so really don't know what to make of it.
Do they mean that those with severe fibrosis are less likely to experience both RVR and SVR and have more frequent relapses -- because certainly that makes sense as severe fibrosis is a negative pre-tx predictor of SVR. Or, do they mean that those with severe fibrosis *who experience RVR* are less likely to experience SVR, etc. BIG difference.
Guess you gotta go fork over ten bucks or so, read the complete study, or go buy a case of beer instead. Oopps. forget the beer for now.
Sat night & I just knocked out my first case, better not drive till tomorrow. Who am I kidding - I had a spicy fish taco last night & would not order a bottle of non-alcoholic beer. I was like - how pathetic is this???
Looks like RVRs w/o severe fibrosis had 8% replaspe vs. 18% for those w/ severe fibrosis. I don't think the sample is big enough to read much into that - a couple extra relapsers is all it would take.
Looks to me though like RVR removes maybe half the stigma of adv. fibrosis - which ain't all that bad. A big black mark pales to a muted shade of grey.
it is best to do the treatment(tx) only if you are ready and willing to go the length. You have to be mentally committed to do this or it might become an exercise in futility. These meds are hard on the body and its effects are different in everyone. Some hardly feel it, some feel it and can manage the discomfort with the assistance of their providers, and some feel it so bad that they have to take time from work. Until you start, you can't tell how it will be for you. There are some women here going through tx with kids at home. It is not easy but it can be done. You have to be ready for this. Going into tx with the thought of shortchanging tx is going to bring dissappointments and frustrations. If your damage is not severe, and you are under 45, you might be able to just monitor your condition in the hopes that easier meds will come in a few years. Bear in mind that those trials are still in the early stages and are done with selected individuals, and that once the meds are released into the vast pool of humans out there, you might see things surfacing that were not present in the early trials.
The tx is no picnic, but it is manageable AND temporary. HCV is forever.
Folks have had all the positive predictors, have been 100% complaint, gone the 48 wks and still relapse. And then you get the underdosed, under treated and they get SVR. It is a gamble. Once you treat and quit, you will no longer be tx naive, and might find it hard to enter trials or find a dr that will be willing to work with you.
Many factors to consider, for sure.
How's my biys doing today? I see you are both up and at it already...How you feeling? Goof, you get your labs back for this week yet? Any improvements? Jim you still doing the B-12"s, any improvements?
I'd like to hone in on your question a little better after reading my ramblin' post of late last night (or was it early this morning.) :)
I think your're idea of let's call it "testing the waters" for 4-weeks to see if you're one of the 20% Super Responders is quite valid -- that is, if you have little or no liver damage.
Using the risk/reward equation then, in this scenario you're exposing yourself to the treatment drugs for 24-weeks maximum should you respond. If not, the exposure is only 4 weeks and then you go into a "watch and wait" mode. And hopefully, some of the newer trial drugs will not have you wait too much longer.
That said, if you're a stage 3 or 4 (significant liver damage) then you might consider the longer course treatment, as the short-course studies are only preliminary and you have less wiggle room should you not SVR.
Mom, I think this is one of your first posts, so I guess it prudent to tell you that none of here are doctors, these are just layman opionions, and I strongly suggest you don't make any treatment decisions based on anything here until you check and double-check things out with other sources including your treatment doctor. That said, you will find some good advice from the patient point of view.
Just to clarify, I'm not recommending that any genotype 1 necessarily treat -- short course or long course. In fact, many would suggest you take no course other than watch and wait. Where I see the "short course" concept for now is kind of a risk/reward compromise between traditional treatment and "watch and wait" for those with little or no liver damage who decide they want to give treatment a chance now with the current drugs. You should also check out other web sites like Janis, Hepatitis Neighborhood and Projects In Knowledge for different perspectives on treatment.
If you decide to postpone treatment, I would highly advise you to thoroughly investigate the measures you can take to protect your liver while you're waiting.
We know it will be at least two or three years (or more) until new drugs are available. The virus will continue to wreak havoc on your liver and other body parts during that time. In some cases, the damage will be barely measurable, in other cases in could be quite dramatic.
Since you don't have a crystal ball to tell you which camp you'll fall into, it's important to take some measures to protect your liver as best as you can while waiting. It's also very important to monitor your liver enzymes and viral load every six months or so, and to get an annual Fibrosure test to keep on top of your fibrosis level.
I've been on an aggressive vitamin and herbal supplement regimen for the past couple of years. Additionally, I eat a lot of "anti-inflammatory" foods and generally take very good care of my body through diet, exercise, adequate sleep, etc.
Quite frankly, I feel better now than before I was diagnosed, and my histology has improved rather significantly. I can't promise you'll have the same results, but it's worth a try if you decide to go the watchful-waiting route. But keep this in mind: You have to be willing to spend some money and be very vigilent in taking the pills consisently. Half-hearted measures simply won't work. It's a labor-intensive and financially expensive proposition.
Bottom line: Waiting is a controversial option. But waiting -- and doing nothing to protect your liver during the wait (which one frequent poster to this board seems to advocate) is just plain crazy, in my opinion.
Check out the archives for postings on "Alternative Treatments" and look for comments by me, Califia, Foreseegood and others. Don't take anything (even the stuff recommended by me and the other gals) without researching it very carefully yourself.
I agree that if you take a "watch and wait" approach you should wait smartly. This is often called leading a liver-healthy lifestyle.
A liver healthy lifestyle can include either eliminating or limiting alcohol to an occasional social drink; eating a healthy and balanced diet; a good exercise program; getting down to your ideal body weight; eliminating tobacco; stress reduction techniques, etc.
As far as vitamins and minerals, I currently take a multi-vitamin and vitamin b12 shots every other week. Others here have different vitamin regimens that work for them.
Personally, I don't take herbs as I had a bad reaction in the past probably due to not researching the herbs involved enough. That said, others have had better results. Whatever you do, check and double check everything you put in your mouth with multiple sources including your doctor. Just like they're no doctors on this web site, there are also no nutritional professionals that I'm aware of.
All the best luck and keep us posted. Can I ask what exactly was your pre-tx viral load, what biopsy stage you're at and what treatment drugs you're on at what doses? Hopefully your eye problems and thyroid issues will get better soon.
Hi. I'm a 56 year old female, 1b, had virus 30+ years, 137 lbs, 13/48 peg/copeg, viral count before treatement 320,000. Had 12 week pcr Monday and results in on Friday. Was told it would take 2 weeks to get results. Have appt. to get results next week. My nurse said could not give results over phone. Does the quick test result have any significance? I am very anxious about the test results. Thanks for letting me use this thread.
I'm a 1b about to start week 21 of what was supposed to be 48. However, since I fit the profile for rapid responder - (low vl at start of tx, 4 log drop at 4 weeks (undetectable below 50 IUs), and RNA undetectable at 12 weeks), and since I have developed cotton wool spots in both eyes and have gone from hyper to hypo thyroid due to Hashimoto's autoimmune disease, (which was a gift from Interferon), they are going to pull me off treatment at 24 weeks. So I guess I will provide some statistics for the shorter tx. Needless to say, I'm apprehensive about this, but they are telling me that what stats are showing now is that there is no additional advantage for me to complete the 48 week course - my chances of relapse are the same in each case. Since I can't say that I've enjoyed any part of tx (other than this forum), for me, that's a no-brainer! All I can do at this point is hope for the best.
So, Goofy, put away the honey pot and go tell the ants they can relax and keep their body parts for themselves - I'm going to regain my eyelashes in a gentler, kinder, less dramatic fashion.
Jim's "bad reaction" to herbs is a good example of why research is so critical. I don't know what he took, but you should try not make the same mistake Jim made of underestimating the importance of investigating things very carefully. It gets you into trouble every time.
THAT SAID, it's also worth mentioning that his "bad reaction" to herbs is highly unusual. I've never seen any other poster make a similar claim about "mainstream" herbs and supplements (i.e. Milk Thistle, Schizandra, Alpha Lipoic Acid, etc.)
At worst, they say that there was no result or no clear benefit from taking them. Since Jim continues to make ominous statements about the "harm" done to him by herbs, perhaps he should share his exact regimen with us so we can get a better understanding of:
1)What specific herbs did so much "harm" to him?
2)What form did the "harm" take?
3)How does he knows that it was the herbs that caused the "harm?"
Carpedi - I was just thinking about you yesterday! I wish going off tx was more your own decision -- we feel better when we feel we're driving the bus, I think. On the other hand, I'm glad to see the data is coming out when it may be beneficial to you. Will you seek a second opinion before stopping? I'm weighing the same sort of decision myself - somewhat different circumstances - but generally the same. With the emerging variable tx cycles comes additional difficult decision making, I'm afraid. Best wishes to you - and I mean that with all sincerity.
Veggie - I've hired a gardener from the neighborhood to go in and do my weekly CBC's now. I give him 40 bucks and a 6 pack on Friday afternoons. Works out great for both of us. Doc saw my latest numbers and said whatever I'm doing I should just keep at it. So I guess I will.
I read an article in one of the local Toronto papers recently about a Chinese woman that was arrested for selling loose leaves and claiming they had weight loss benefit..Well after an extensive investigation into her, upon her arrest it was announced she had a "mixed bag" in her loose leafs...One of the things they found at the forensic lab was phen something or other, it is a drug that was been banned due to it's contributing factor to premature heart failure...I wonder if any of the herbs you used were "mixed bags" and maybe that was why you had such a bad reaction...I buy mine from my ND, all sealed in capsule form and cannot be sold by anyone other than a medical professional...Because of the expensive of the herbs some people have suggested I buy it myself from health food stores, but I think I will stick with what I have, grin and bare the cost and hope like heck they are safe...I haven't had a liver panel drawn since I started them, will wait till it is 3 months post and see how the AST/ALT look...Prior to taking the herbs I was very slightly elevated so anything above that will force me to discontinue...My ND did quite a bit of research on that Nu-Liver that is sold online (because i asked her to) and advised to stay away from it, she said it has one thing it in it (even though it is such a small amount) that should not be taken by compensated liver disease patients, I forget the name of the herb, it has a base latin name...So, you see even the Herbalists that seem to be "leading in their field" sometimes can by mis guiding people...
I don't have time to search the archives, but I encourage you to do so if this matter is so important to you. Unless you've read every post since February, it's certainly possible to have missed SOMETHING, isn't it?
Yeah...taking stuff without ANY idea of what's in it is never a good idea. I'm glad you clarified that point.
I'll probably call upon you again to reiterate that and the other points you made whenever you decide to weigh in on this subject. Afterall, a newbie doesn't have the full picture or history of your posts, so we must cover all bases. Sorry if it's tiresome for you to repeat yourself.
I just saw your comment: "I may indeed use an herbal regimen in the future."
Great! Hey I have a good one to recommend if and when that time comes. It lists all the ingredients on the bottle. That way you can do a Google search on each herb and know exactly what you're putting into your body. Let me know if you ever need any help with this. I'd be happy to oblige.
TallBlonde's previous post has some good points and also gives me the opportunity to clarify a few things.
My reaction may indeed have been unusual, and I've often specified that the the herbs I took were a chinese mixture of unknown origin. That said, while maybe unusual, not unique. I've read on boards here and elsewhere where herbs haven't worked or raised enzyme levels. Currently, there's a thread running here "News Stories and Other Posts"
http://www.medhelp.org/perl6/hepatitis/messages/39713.html where "Couldn't Think of A Nickname" shares his experience with herbs supplied by Dr. Zhang, who I believe is also a medical doctor:
As far as "maintream" herbs such as Milk Thistle, my position has always been kind of neutral based on conversations with a couple of hepatologists who said it was fine to take milk thistle. In fact, depending on how treatment goes I may take it myself in the future. The only "controversy" if you want to call it that is that some doctors don't recommend taking milk thistle while on treatment, while others don't seem to care.
Regarding three specific questions addressed to me:
1)What specific herbs did so much "harm" to him?
As I have often said, it was a mixture of Chinese Herbs given to me by a well-known acupunturist/herbologist. It was in "leaf" form and taken as a brewed tea twice a day. Knowing what I know now, I would not have taken the concoction without knowing exactly what was in it, which hopefully is one of the points I've been trying to get accross by using this as an anecdotal cautionary tale -- know what you're taking, check and double check everything you put in your mouth with multiple sources including your doctor.
2)What form did the "harm" take?
In addition to feeling fatigued after about week on the herbs...
Week before starting take the herbs my ALT was 109, ALT was 86.
One week after starting the herbal regimen ALT was 269, AST 195. One month later my ALT was 649, AST 592 plus my GGT was also highly elevated. I've had my enzymes periodically monitored for the past 38 years and these values are off the chart compared to anything except when I had my acute attack of Hep C in the early 70's. Based on the enzyme activity, my hepatologist was quite concerned, called it an "acute" reaction, and suggested I not treat until the enzymes normalized which took about 11 months.
3)How does he knows that it was the herbs that caused the "harm?"
Of course I can't be 100 per cent positive and have pointed that out frequently but the date of herbal therapy, my fatigue and dramatic rise in enzymes certainly point that way. I did take a Hep B vaccine during that period and thought that may have contibuted to the rising enzymes but two hepatolgist I spoke to were skeptical of that theory, as they said they never saw such a severe reaction to the Hep B vaccine.
In summary, I am not against vitamins, minerals and herbs. I currently take a multi-vitamin and vitamin b-12 shots every other weeks. Yes, I had a bad experience with herbs that is probably not the norm, but I feel remiss if I didn't share it with folks. That said, I don't suggest people avoid herbs, just do you research and double-check things with your doctor. In fact, I may indeed use an herbal regimen in the future.
I feel I keep repeating myself but I hope this last stab at explaining things will clarify.
I'm glad things are working out with you and nutritionist. Obviously, you've done your research and are monitoring your results. A good model for people that want to take herbs to follow.
As far as the herbs I took, they were mixed by the herbologist's assistants from a rx (in Chinese if I remember :) ) while I was in the room. To do it over again, I'd have researched things a lot more.
Which is one of the points I've been trying to get across -- don't do what I do, if you're going to do herbs do it in a smart, methodical way. Like what you're doing.
I want to thank everybody for their honest opinions. It's left me with alot of directions to research. I have many questions which is exactly what I wanted. I will research many to narrow down the questions I present to the doc. Thanks again.
Carpedi- I wish you the best and hope the Doctors are correct. Keep us posted.
Nothing could compromise my upbeat and somewhat bubbly personality...I am who I am who I am...YIKES I'm quoting Popeye now!!! That said, the herbs don't alter moods, if you're mean and nasty to begin with, you're mean and nasty to stay...Unless of course you use the herb marijuana, I hear tell that it is a mood elevater...Don't know myself, not a pot smoker but I am sure someone on here can testify to that...
Wow jm, heck of an issue. It is hard to conclude anything else but the herbs raised them up. It is amazing how you find more and more people who have had this for 30+ years.
A comment on Milk Thistle...I have taken it 2 different times, and you might want to be careful if you allergic to ragweed, as it comes from that family. It might not cause a problem, but you never know.
Judge for yourselves if the following verbatim statement is defamation as Kalio calls it:
"Bottom line: Waiting is a controversial option. But waiting -- and doing nothing to protect your liver during the wait (which one frequent poster to this board seems to advocate) -- is just plain crazy, in my opinion."
I said "SEEMS TO ADVOCATE". The word "seems" reflects my opinion about Mr. No Name's position on waiting. Calling this defamation is absolutely ridiculous. In fact, Kalio's attack on me is more defamatory that anything I've written. But she's not responding to me anymore, so I guess an apology won't be forthcoming. Oh well. C'est la vie.
Good thing I read all of the posts above. At first, I thought I was No Name as some use variations of that to address me. But, I am correct in my assumption you are not referring to me? I am thinking this is one of those ambiguous non verbal things that can be taken wrong.
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