To Non Responders/Partial Responders

To all those who have/or are cleaing while on tx  congratulations are in order.  To all those, like myself who have not cleared I would like to know what course of action you are taking, have taken or are planning to take?  Any clinical trials, certain herbs or other trustworthy pointers and/or feedback is greatly welcomed. The road goes on and on for us and stopping progression would be a goal until something better comes along.  Thanks!

[Eyedeas]

First of the year I go in to see my gastro to hear what if anything new is in the works.  Treated in 02 for 48 weeks relapsed within a  month and had a heart attack in Feb of 03.  I'm not sure what I'll do if nothing new is close.  All of the reading I've done says that the only thing that seems to help even a little may be milk thistle.  Everything else out there at this time seems like a lot of snake oil.

Hang tough!

Kim

[julie4uk]

I have heard that Infergen is good for those who have not responded to other treatments.  I have not cleared either (45 weeks on Pegasys) and am getting ready to try the Infergen as soon as my blood levels are back up a bit.

[tigerdream]

Just a little tidbit, that may help, definately won't hurt. Recent studies have shown that 1-2 cups of yogurt (live culture) daily can boost the bodies immune system by increasing the bodies natural interferon by as much as 4 times within a month or so. I do this without fail, boosting the immune response in a natural way, I definately would'nt think it could hurt. Even a small increase in resistance (and 4 times the natural interferon seems signifigant)sounds like a good thing to me. Just my opinion, hope it helps. Personally I'm trying to wait for the protease inhibitors (hoping).~Tigerdream~

[hortbob]

I'm a nonresponder and ended treatment 4/02.  My doctor knows of nothing for me to do.  You may look into clinical trials if you think you may qualify.  My doctor had told me about a trail for interferon gamma but I did not qualify due to having a low platelet count.  You may want to check out this site http://www.centerwatch.com/  You can look for clinical trails which you may be able to participate in.

I also have MDS and am preparing for a bone marrow transplant.  If you have other health concerns taking care of those may be the best thing you can do.

I would be interested to hear if any nonresponders have been put on a schedule for tests.  My gastro has me get my liver funtion test done monthly.  He hasn't wanted to do another CT Scan or ultrasound.  My concern is that I could develop liver cancer and not detect it early enough.  I went a year with out seeing him and now he wants to see me every 3 months but, nothing ever seems to happen when I go for my appointment.  I guess he just wants to see with his own eyes if I'm still alive.

Bob
***@****

[fabienne]

I'm not going to do anything. I haven't heard from my Dr since she told me I wasn't clear and that was pretty much the end of it. I have no symptoms nor liver damage so I'm not going to do anything but live a healthy lifestyle...

[TravisB]

What level of damage did your biopsy show and how did you handle TX body and head wise.  How long did it take you to recover from Tx.  Those are the main questions you should be asking yourself before considering TX for a second time.  I am amazed at how many people with relatively low liver damage jump right back onto TX  with basically the same drugs after having failed the first time. I almost did that myself until sitting with it for awhile and considering other options.

[sonata1]

Eyedeas-boy you've had a rocky road and yes Milk Thistle is the best for now-just would like to see more options for us non-responders. Hopefully soooooon.

Julie: Haven't looked into Infergen yet as an option. Would like to know the odds of this and maybe someone who has gone this route?  

Tigerdream: Thanks I ran out and stocked up on yogurt (haha), this I CAN do. The protease inhibitors are supposed to be something great coming along.  We want it now!!!

Hortbob: Looked into the clinical trials,there is nothing for me either.  Just a little upsetting seeing the doc and there isn't anything he can do.  You are absolutely right, I do have other health problems and have been focusing my attention on these.  I have the same concerns as you with fatty liver developing into liver cancer...this worries me greatly, but have been trying not to be overly obsessed with achieving SVR - really want to focus on not progressing any further. Good luck with your bone marrow transplant.  Yes, I think my doctor also wants to see if I'm alive, going for another bx on the 17th. Maybe maint therapy if this has progressed really far.  Keeping positive thoughts for all of us.

Fabienne: No symptoms or liver damage is definitly a reason to stay put.  There is really no other way to go.

TravisB: Stage 3 bridging fibrosis, headwise was a bust (hard to tolerate the riba), Pegasys was okay.  Am not really considering tx for a second time, my goal is to try to halt progression. Tx may have done some good so my next biopsy will tell all.  I'm doing nothing right now, just waiting like everyone else.  Did consult with a nutrionist and am waiting on a liver friendly diet.  What other options are you considering?

Thanks for all your replies - they do help a great deal.

[TravisB]

One thing I've been doing is adding different supplements to my diet: Alpha Lipoic Acid, a product called Liver Force (by New Chapter), more milk thistle than before and a few other things.  I'm not saying I'm a believer yet but since interferon didn't work for me, I don't feel like I have much choice but to find my own way.Western medicine has done all it can for me at least for now.

You'll hear people scoff at alternative medicine but I'm curious as to what they would or will do if TX doesn't work for them.  Another thing I'm considering is accupunture and also homeopathic medicine.  I'm mostly concerned with quality of life today not long term issues but I believe that if you find something that impacts the symptoms of the disease, that usually means your liver is getting some relief too.

I plan to keep searching until I find something that helps even a bit or until I've exhausted all options and funds.  Should a new or much improved conventional TX happen, I will jump on it.

Are you experiencing Hepc symptoms now?  Have you fully recovered from TX and when I say fully I mean all traces of it gone?

Best of luck to you and hang in there.  Researchers are working all the time to find a cure that may help all of us. Travis

[mofo]

Save your $$ on the accupuncture. I tried that already. It didn't do anything physically, although it might have had a brief mental effect.

[susan400]

I have mild asthma and milk thistle aggravated this condition, so I can't take milk thistle.  I've never been a responder, but I continue to retreat.  The only difference now is that I'm on way higher doses of Interferon.  There's a doctor on the web, Dr. Cecil who treats non-responders in this fashion.  I think he's called, "The HEP doctor".  Anyway, since I've been on the high dosing, my viral load has dropped more that it ever has.  I've already tried Infergen-did not respond to it either.  I've tried Pegasys and my viral load and LFT's actually went up on it.  Currently, I'm on Peg-Intron and daily doses of regular Intron-A of 9mu, so on Sat. I get both shots.  I'm due to have another viral load soon.  My last one was down to 13,000 copies, so I'm hopeful.  There's been some studies done over in Germany which shows that non-responders do have a better chance at remission if they retreat with high doses for longer periods of time.  Susan400

[Helyn]

I'm wondering how much milk thistle those of you who are taking it, are taking, and what type/source?  I'm taking 175 mg. a day.  Thought about upping it.  Also I am wondering about Infergen and whether those who are taking it or thinking of starting it, are taking it three times a week, or daily?  I understand it is being developed in a pegylated version but what is different about it, in either form?  Thanks for sharing your information!!  Helyn

[TravisB]

Helyn: I use about 500 mgs per day of sylymarin in capsul form;sometimes more sometimes less.

[sonata1]

Yes I have recovered from tx. No real symptoms at this time but am really NOT waiting or wanting my quality of life to go down as it progresses.  I keep stating this to my doctor.  Hmmm, one day...

[sonata1]

My goodness you have been roughing it quite a bit. Hope everything will work for you this time. Sorry to ask but if you want to can you plese give me a quick overview of your stats?  I will also keep you in my thoughts for your next results.  Boy you are a fighter!

[raining]

I've been using Chinese Medicines the last few months to try and halt the progression of liver damage. I'm very aware it is not a cure and only tx can get rid of the virus (if it works) but I have noticed a reduction in my Hep C symptoms (not a disappearance, a reduction). An experienced practioner will work out an individual formula according to your symptoms and the cost neen't be too high. I pay about $20 per 10 days worth of medicines.

[susan400]

My stats are:  I'm a mixed genotype 1A/1B.  I have both strains of it.  I've had 2 biopsies, 5 years apart and from biopsy #1 to biopsy #2, there was worsening of my fibrosis despite having treated twice during that 5 year period.  Every time I go off of treatment, my LFT's get high and my viral skyrockets.  I just don't want to see this thing progress further and my doctor feels like that's what would happen since I did progress between the two biopsies.  If I'm able to get a remission, and it's a SVR, then at least I'd have a chance of the fibrosis eventually reversing.  Susan400

[Galen]

Here I go again.......  For all of those who are taking milk thistle, you need to be aware that it can interact with many other medications, particularly antidepressents and sleeping pills.  The following site contains a good article about it, as well as a list of meds that are impacted.

http://www.hcvadvocate.org/hepatitis/hepC/mthistle.html

[sonata1]

Thanks for the tip on what you are trying.  I also tend to agree with you and it is difficult to just sit back and do absolutely nothing.  What are the doctors thinking when they stare at you and say, don't worry something else will come along?  It must be very hard on them as they cannot offer anything for us thru the conventional meds route. For me I'm afraid to use any unconventional method unless progression is so far out there.  I go back to the nutrionist next week and will let you know what she said. Again if there is one ounce of info that we aren't already aware of it will definitely be a plus. Take care.

[Dinkydi]

Hi everyone, About 4 months ago I had an prolapse operation and after the general anasthetic, antibiotics and pain killers I thought I'd better check my liver enzyme levels. I have Hep C for 20 or 30 years and discovered it only 5 years ago when my ALT's were 900, since then they have hovered at 145 so I was amazed at the levels. My ALT's were 47 and AST's 45 . The best they have been. Now don't all go out and have a prolapse op. But the only other thing I had done different was buy a Magnetic sleep system about 6 weeks before the op.I would be interested in knowing if anyone else has tried this. I bought a Nikken brand (they say they are the best and they are the dearest) which included a magnetic mattress overlay a pillow and an infra red comforter.

[willing]

I'm having a fairly  dismal day and am in  no position to contribute anything coherent butI believe the topic of this thread is very important. Tx is a short ride compared to long-term management of chronic infection and unfortunately this forum seems to be  almost exclusively focsued on tx. Keep posting...

[sonata1]

Hope you are having a better day today. Thanks for your vote. Yes it is difficult to find places to post with regard to the long term affect of managing this awful disease after not clearing. Here's hoping others will also post their finds and fears as well, it does make things more bearable.

[Susan from NY]

Hi Guys! I too did NOT respond to Pegasys and Copegasys. Am geno 4a btw stage 2&3.

I think the importnat thing to remember is that Hep C is NOT a death sentence. Many of us have lots and lots of time and even many with cirhossis do OK.

Lets remember this is not the end of the world.

Sure I amupset I did not clear the virus, I was very upset but new stuff IS being worked on and most of us will die befor hep C kilss out-jus read the statistics.  Love this forum.

Tkae Crae,
Susan from NY

[Susan from NY]

most of us will die with hep c not from it. Let's try to kep this in mind. I am btw stage 2& 3 and have had hep c for over 30 years. I did not respond to the Peg&Copeg and of course amd extremely upset but trying to stay calm. Positive feedback surely welocme and would love emails: ***@****.