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Avatar universal

options for no responder

Greetings,
I have recently completed 48 weeks of Pegasys Copegus  TX. Although I did not  achieve a 2 log drop at 12 weeks (the actual drop was from 3 million before TX to 120,000 at week 12 and 85,000 at week 48), my GI suggested I stay on the full  48 weeks of TX  as I am stage 4  and cirrotic. Also I was able to tolerate TX fairly well. Now I'm seeing my options as follows:
1. continue on a half dose of Pegasys indefinately to try to reduce continued liver scaring. (suggested by GI based on recent successful studies)
2. stop treatment and wait 6 months or a year and re-treat with either Pegasys or Infergen.
3. stop treatment and try to enroll in a test trial for one of the new therapies. Maybe some combination of the three.
Does anyone have any experience with either of these options.  Also does anyone know of any lifestyle changes (besides abstaining from alcohol) that reduce liver damage? Thanks for your feedback.
11 Responses
Avatar universal
Some folk have had good reports with the Infergen, which at this time is for non-responders ONLY.  I know that one guy in here though had a horrible time BUT he was taking a very very inflated dosage of the meds I believe.

Had I not responded this was the way I was going to go. Infergen/Ribavirin.  I believe if you do some research they are getting some very good odds - better than with regular Interferon, like 80% for Geno1 or something...but it's a harder treatment.

As you have advanced damage and handled the tx well on the first shot - I would seriously at least consider trying it out.

Best of luck, I am sorry you are having such a rough road. This disease just sucks.
Avatar universal
1. continue on a half dose of Pegasys indefinately to try to reduce continued liver scaring. (suggested by GI based on recent successful studies)

Also a stage 4 here, and been going over the same thing, although i still have a ways to go. It was suggested to me if it comes down to that my hepo wants me to continued with something as to aleast halt any further damage until these new drugs our out. So out of the options he gave you i go with door no.1

Some one else might know of summin better or our on that path and give you better advice. Best of luck to you
92903 tn?1309908311
Some folk have had good reports with the Infergen, which at this time is for non-responders ONLY.

Could you clarify? I thought it is sometimes used for relapsers and tx niave. But I could be wrong.
Avatar universal
It was created for NON-RESPONDERS and the protocol is for just that (which is why I was shocked when someone aside from Magnum said they were on it but they also said they were tx naive)

I read everything I can on it and spoke to my doc at length and he has stated ONLY for non-responders (as it's at least 3x a week or daily and MUCH harder than the regular Interferon why would any doctor even start someone on the Consensus it would make no sense).

But of course - I did read the person who said that they were a first timer as well so I have no idea what is going on with that as I'm sure it is being used for NONs and not naives as far as I was aware of in all the reading and talking.

God knows I'm not always right though LOL.
Avatar universal
When I found out I was stage 4 it was an easy decision to start my first treatment.I figured maybe I could spend one year and end the problem. I stopped that tx at 16 wks. Then My doc suggested the daily infergen/ribba trial which I did for 48 wks I still had hepc. Then the doctor suggested maintenance and I was going to that but Then he changed his mind.He said he wanted to keep me off the interferon and get me into  one of the new inhibitor trials. I'm not sure but maybe he wanted me clear  of drugs so that I'd be elidgible for a study. He did say that the tx had probably helped my liver thus buying a little time. So coming from someone who has done it I wouldn't  do a long course of infergen for a 50% shot at clearing.Thats because the infergen was hard on my body and mind. peg maintenance is suppossed to to provide bennifits without side effects.Hopefully the new drugs will provide an easier way to clear without combo therapy.Of course you must make your own decision.
Avatar universal
Otis,

You could combine a couple of those options. For example, you could go on 1/2 dose mainteance and keep your eyes open for trials with the newer drugs. Vertex hopefully will open the door to relapers soon and from what I understand -- assuming the trials pan out -- some of the first folks to use Vertex (with peg and riba)will be those who had slow response to peg and riba alone.

goofy, ny

Infergen is commonly used for non-responders AND relapers. Some docs will switch to Infergen mid-tx if response isn't up to stuff and other times infergen will be used to treat relapsers the second time around. Some treatment naive are also on it but far less common.

-- Jim
Avatar universal
Yes non-responders AND relapsers.  I've just never heard of it being used for tx naive people and it makes no sense.

Thank you for qualifying, I didn't even think to.
Avatar universal
I was wondering about Milk Thistle.   I have never heard of Sam-I am taking Milk Thistle right now and have 2 weeks to go before my first appointment with the specialist.  I am hoping it will do something.  I noticed when on the internet there is something called Silver - - -,  Have you ever heard of it?
Avatar universal
Hello again,
I just want to say that even though I've been monitoring this Forum for the past year this was the first time I posted a question. I want to thank you all for your very helpful responses. It feels good to be in contact with real people who are going through similar circumstanses. I'm going to see the GI tomorrow and discuss all of these options with him as well. Bye for now.
Avatar universal
Having relapsed on Peg-Intron/Riba (48 wks.) I was then put on Infergen,(52 wks.) daily injections.(actually tougher sides than Peg), showing 6 straight undetectables & ultimately relapsing before 4 wks. after finishing therapy. I am now on Pegasys Maintainence, 4.5 once a week. Very little sides.

I was just going to jump right back in & try a trial, but my body told me different. I do not feel as if I can wait extremely long (1B,stage 3, fibrosis 4,inflammation 2.)

It's a **** shoot, but I am going to try & wait for the new drugs, hopefully w/o the Riba.

I still have lingering side effects & I am wondering if anyone else has experienced numbness in their legs & feet? This has caused major falls for me, as their is no indication when this is going to happen. I have seen 2 Neurologists, a Orthopedic Surgeon, & a Neurological Surgeon. We still do not have a diagnosis?

Sandy
29837 tn?1414538248
Otis, you said "Does anyone have any experience with either of these options. Also does anyone know of any lifestyle changes (besides abstaining from alcohol) that reduce liver damage? Thanks for your feedback".

While I was on the mega Infergen treatment, the doctor told me not to bother with Sam-E and Milk Thistle I was taking on a daily basis, because during treatment, it's of no use. The bombardment from the medicine is much more potent.

However... now that I'm off treatment, he insists I take Sam-E and Milk Thistle on a daily basis, as I have been for several years now. My ALT & AST numbers were consistently in the 130-140's off-treatment and in-between treatments. After a few months on Sam-E and Milk Thistle, they were in the 80's.

Do your research on these two supplements. Ask your doctor if you should take them. Remember that routine exercise can boost your immune system as well...

Good luck,

Magnum
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