Worried about problem

[Mocha2005]

I have just been been told that I am a non responder. I have Hep C, type1. I had been on treatment for 13 weeks.  it was not successful for me. I am feeling pretty down right now about it. I do not really know what to feel at this time. I have not been  feeling well for the past week, I think I have been going through withdrawals. I am feeling kind of hopeless.  I went through the terrible treatment for 3 mos. and the stuff did not work. I am trying to pull myself back together after the let down.  I hope someone can give me some type of encouragment to keep me and all non responders pressin on. Where do non responders go now? HELP! HELP!!!!!

[SPIRITJEMS]

Thank you all for your responses. I have more information.
My friend had to stop for 4 months between may 2003 thru april 2005. She did take the 2 other injections jj mentioned. Additionally, she developed hypothyroidism which has to be treated seperately. She never had a liver biopsy just a ultrasound.( didn't see much that way. )
Now the doctor wants her to start a more aggressive treatment. I think it is ferigen??? Does anyone know about that? He wants her to start right away but she wants to wait until next year. She said she wants to build her body up again. ( food and excercise.)
I don't know. She does not sound very optimistic. She has had her hep c about 30 years now. She got it while living in costa rica. she thinks she got it in a dentist office over there.
I don't know what to make of all of this. Can someone tell me the reality of this situation regarding this ongoing treatment. Is anyone here doing alternative therapies?? I have such compassion for everyone here. I send you all my strength and support for long, healthy lives.
spiritjems
ps
I was told in meditation that she should take spiralina???

[cuteus]

do what you must first, we all seem to get lost once in a while.

I don't want to hear that all your pains left...mine are still there, which now leads me to think...it was AGING happening, I can't blame hep c now. Both conditions are not pleasant to experience.
you have fun, and come back to tell us. Hope your $$$ for meds get resolved soon.

[jmjm530]

Cuteus said previously: "did you say we agree on something????I must work on my technique!"
-------------------------------------
LOL. Yes, you must be slipping. :)

I also agree with you that viral load fluctuates wildy and I assume the study group tested viral load within a finite time period before tx started. I had my viral load tested within a day or two of starting tx and that would be my advice to anyone else although most doctors think anything within 6 months is OK.

But all said, the study group of geno 1's did achieve over 90 per cent SVR in 24 weeks which has to make you stand up and take attention, whether or not you're going to follow that protocol on an individual basis.

-- Jim

[SPIRITJEMS]

Thank you all for your responses, wow, so helpful and lovingly s upportive. Believe it or not, I really feel the group warmth here!!! My girlfriend got her hepc many years ago when she lived in costa rico. She doesn't have any liver failure at this point.I think she stage 0 or 1.  She feels great and is full of energy, something she did not have during treatment. I know she started the first 12 months and had to stop and then start again. She finished 2 years 6 monthes ago.  she was also taking i2 other injections, procrit and something else during the entire treatment.  White blood count has  been very low throughout and a blood transfusion was suggested. She lost hair, weight, took a leave of absence from work and became severely depressed. also she has a strong stigma attached to her illness and has kept it a secret. I sent her the website here and hopefully she will look for herself. I am praying for that.
Thank you all again for everything. Be well and I am routing for all of you.
spiritjem

[jmjm530]

I'll also add that wildly fluctuating viral loads (my changed from 16,000 3-months prior to tx to 1.5 million, day before tx)might have screwed up much of the so-called two-log data in traditional 48-week studies. Truth is, treatment is part science but a good part cr*p shoot.

-- Jim

[jmjm530]

It sounds like her two extra shots were Procrit for anemia and Neupogen for low WBC. This happens a lot.

My suggestion is she either has another biopsy and/or a blood test called "fibrosure" before she makes any treatment decisions.

If she's still a stage 0 or 1, she might want to wait for better treatments that will be here hopefully in a few years. Especially given the hard time she had first round and the fact she's feeling good now. In most cases this is a very slow progressing disease and treating is not the right decision for everyone.  

-- Jim

[cuteus]

yes, sounds appealing, 24 wks, but when you read all these folks here who cleared before wk 4, were 100% complaint and still relapsed...brrr. That is cold! I would not chance it. And since VL fluctuates so much in either direction, we could have been a high vl when tx started even though 3 months earlier it showed "low vl" or low vl at start even though earlier pcr showed high load. So, unless they do a PCR right before the first shot  on these subjects, how can they use that as a criteria for therapy length? I love how these guys like to play with numbers.

did you say we agree on something????I must work on my technique!

[jmjm530]

I thought they did come up with a SVR number for geno 1s -- 28 percent on the second chart, maybe I'm wrong. But I really think you have to go to the newer studies that use Peg. From memory, I believe newer studies using peg show no more than 25% SVR for those geno 1's who did not have a two-log drop by week 12, under a 48 week course of tx. Extended treatment did increase those odds and that's why extended treatment is important for those that don't clear easy, which we both agree.

As far as the 24 week study,I'm sure it will be duplicated -- but what is an "independent" researcher. :) I think 99 per cent of all the studies we go by are funded by drug companies. Meanwhile, it does offer alternatives to that select group of geno 1's with low viral loads who are undetectible by week 4. Especially if they're fence sitting on treatment for financial or other reasons, or if they have a particular rough time with side effects.

-- Jim

[cuteus]

it does appear that number might include all genotypes but it is not very clear in that point. The fact that"The treatment groups were similar with respect to variables known to be associated with an SVR, although consistent with US HCV epidemiology, more patients had HCV genotype 1 (72%) than in the international trial. The results were similar to those of the international study:... "
72% were G1, it would be nice to have the percentage divided by genotypes that did not clear by w12, but we could presume it was highly probable they were mostly g1's. As you said, pegylated inf was not used so possibly, it could  increase these odds even more for G1.
The so called 24 wk, 92% svr study, funded by Schering, needs to be replicated by independent researchers before they go changing the protocols for geno 1, in my opinion.

[jmjm530]

While studies show extended tx can benefit some of those who do not clear at week 12, the "50% SVR" you quote is for all genotypes, not genotype 1.

50% would be a more accurate number for SVR for all geno 1's, including those that RVR, EVR, etc. Also, the study cited is from 1998 and doesn't use a pegalayted inteferon.

[cuteus]

mocha, we could use a little more info when you get the chance. Many drs call it quits at 12 wks when they shouldn't having a positive test at that time does not make you a non responder. what was your vl at that time? I was still positive at wk 12, did 72 weeks of tx and so far am negative, a study at this link
http://hopkins-id.edu/diseases/hepatitis/hep_sulk_1.html

states that even when geno 1 clears after wk 12, they saw a 50% SVR.

spirit-
did your friend have combo therapy or just interferon?

[Tallblonde]

Hey Ina,

Check out the thread below (way below) titled: "New Phase I study of 'Tarvacin' for HCV in Bradenton, FL"

Very exciting stuff.

Susan

[Tallblonde]

You're back!  I've missed you this past week or so.  How are you doing, my dear?  

Susan

[jmjm530]

Sorry your friend relapsed. It happens to about 50% of geno 1's. Do you know what stage liver damage she has. It should be on her biopsy report or she could ask her doctor. Given the side effectson the first round of treatment, if she's stage 0 or 1, then perhaps watchful waiting is the best approach, as well as living a liver healthy lifestyle -- little or no alchohol, watch your weight, eat right, etc.

There is no published data on Ozone therapy lowering viral load. I believe ir origihated in Russia and many alternative medicine doctors use it here. Most of them have no training in liver disease. I wouldn't chance it.

-- Jim

[scruffy]

Most peoples hair just thins partly-if you went 16 weeks you're hair is probably about as bad as it's gonna get would be my guess. I sure do agree about taking an AD-that was a rough thing for me cause I thought I could get by without needing one. I did get by but just barely. Be well and lucky too for that matter. frank

[SPIRITJEMS]

Dear friends:

Thank you for being here. I am trying to gather info for my best friend who is very down right now. She has hep c genotype 1a. She finished 2 years of interferon treatment and 6 month blood work came back positive. viral load 300,000 low-medium and white count continues to drop from 4.8 to 3.2. She will not go back on treatment as it was devasting for her system. I am wondering about alternative treatments such as ozone. I would appreciate any information for her.
Thank you so much for support.
spiritjems

[polejumper]

Everybody is aboslutly right,a positve adittued is theonly way to survive this garbage,as I went through is with all the side effects(X10),attitude was my savoir as I proof positive Iam a survivor and been clear for 2yrs.But I had a transolant.

[rearfang]

The above posts have said it all. Don't lose hope. I wish you well and hope you will soon get a new perspective.

Asmile4u-- You have a great attitude. I admire your strength and determination!
Lauren

[jmjm530]

Don't give up. In general, you have a lot of options. Like HCA said, many of us did not respond the first time but cleared the virus later.

It would be helpful if you could give us some more information. Tell us what you know and try to get a copy of your medical records for the rest.

(1) M or F? How old? Overweight or not?
(2) Do you have any idea how long you've had the disease?
(3) Drugs and dosages taken during treatment
(4) Pre-treatment viral load?
(5) Pre treatment liver enzymes (ALT and AST)?
(6) Results of viral load tests during treatment?
(7) Any other significant diseases?
(8) Stage of liver disease -- from biopsy?
(9) Side effects during treatment and how well did you handle them?
(10)Did you have anemia during treatment and were you given anything for it such as Procrit?
11) Any other drugs taken during treatment such as anti-depressives?

Stay hopeful! Lot's of options out there now and many new ones coming soon.!

-- Jim

[ASmile4U]

Thanks, Frank....I'm ready, it's not near as frightening the second go around.  A little concerned about losing more hair though, I've thinned quite a bit...already went very short...but hey, if being bald is the worse thing to come of tx...I'm game.  Bald is beautiful, right?!  LOL    :)

[scruffy]

Mocha-good advice and info already given in above posts.

ASmile4U-Here's wishing you well with the infergen. frank

[ASmile4U]

At 16 weeks, my tx was stopped because I too was a non-responder. Geno type 1, VL went from 1.9 to 44,000. It looked to me as if I was responding fairly well to PegIntron/Riba. Initially I had a difficult time dealing with it, however, 5 weeks has since passed and it's gotten easier.  I feel better than I have in approx a year although some of the pre-tx sides are starting to bother me again and I sometimes think they are worse than the sides from tx.  One thing I realized after stopping tx though was that even though I thought I could do tx without and AD...I thought wrong.  I could clearly see the changes and will insist on an AD next go around.
I have an appt with my GI next week.  Once all lab work is back to pre-tx levels, he will start me on Infergen/Riba.  Hoping to start in September, levels were looking much better last week. I don't know a lot about Infergen, but have talked to a few people who are on daily Infergen and it too is tolerable.   Not too excited about doing 3 shots a week...however...what do I have to lose?  I want rid of this ugly virus and will do whatever it takes to achieve SVR!  :)

[HCA]

A little more information would be helpful.
Could you find out a) base-line,that is your viral load prior to treatment.
b)Viral load after 12 weeks.
Also your Liver Function Tests before and after.
If you can get this info, post it here.Also biopsy if known.
You ask 'where do non responders go from here?'
A little over half type ones fail on treatment,so you are in a majority.
Depending on the state of your liver you treat again.
I am 18 weeks into 4th attempt,and getting best response so far -viral load 1.2m to 600 in 12 weeks.
If your disease is not too advanced you wait three years (approx) for the new drugs.
The investment in HVC research is mind boggling,and in our lifetime we shall see super effective cures and possibly vaccines,so that HVC will end up in the dustbin of history.
Another treatment option for non-responders will be low dose interferon maintenance therapy.