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Pegasys Maintainence

SJL
Is anyone on Pegasys Maintainence or does anyone know anythng about it? Also, I have lost Dr. Cecil's Address and I thought he changed his e-mail?
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Avatar universal
Yes, the intention of maintenance is to TRY to prevent any further liver damage but the method of preventing damage is by lowering the viral load. My VL went from somewhere in the 5 log area to undetectable after 16 weeks of 180mcg. of Pegasys alone, after relapsing. When I cut back to 145 mcg. it went up slightly and is now back down to around 57. If and when it gets back to undetectable I will cut back to 90 mcg. It is the lowered amount of virus in the blood that is protecting the liver from further damage and hopefully even healing itself then. If the maintenance was only to keep the viral load from going any HIGHER  than it is after relapsing or to keep the liver at the presnt level of damage then thats a different story and would be better than progressing further I suppose.
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Avatar universal
My understanding is that maintenance therapy is still intended to kill the virus and get the viral load as low as possible, hopefully undetectable. By getting and keeping the viral load down the liver should "heal" since it is no longer under constant attack by the virus. My nurse practitioner mentioned that people on monotherapy alone do clear sometimes. People with certain conditions cannot take the Riba so they treat them anyway with interferon only so it's possible to achieve SVR with monotherapy, just not too likely for a relapser like me. I sometimes wonder if the 5 days of Copegus that I missed early in Tx had anything to do with my relapse. A mixup with mail Rx caused me to miss 10 doses. I should have been more pushy with the hospital to get the meds from them but they were the ones who set up the mail Rx and I just waited for them after being told they "should" be there tomorrow.
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Avatar universal
Sorry Petey, I am with Jmjm530 and sjl...maintenance therapy keeps the liver in the condition it was in at the end of therapy, with hopes of preventing further damage. I guess halting the damage, not with hopes of clearing. I guess we can all hope though...It is a low dose of interferon and no riba. I would think if you took a full dose and riba it would be regular therapy, not maintenance.
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Avatar universal
The little I know about it...the purpose of maintenance is to regress and possibly reverse the progession of fibrosis not to clear the virus. That said, I have heard of at least one case where someone went non-detectible on maintenance. If that rarity happens, probably wise to add some riba and try and kill if off. Sorry about the sides and please keep us all updated on how you're doing.

-- Jim
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SJL
I guess I am confused regarding your Pegasys maintainence. It is my understanding and maybe I'm wrong, but the maintainence will only keep your liver as it was when you ended therapy, and cannot physically treat your liver? Please give me your understanding.
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Avatar universal
I have been on Pegasys maintenance since the first of the year. Started at full dose and cut back to 3/4 dose when I showed clear. The viral load went back up slightly after going to 145 mcg and although it has gotten very close to undetectable again, it's still not there. The goal is to try to get back to undetectable and go to 90 mcg. and hope to stay undetectable. My liver enzymes are normal and except for some fatigue and lack of stamina there are no side affects that I notice. I am male,52, 1A relapsed after 48 weeks Peg/copeg combo.
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Avatar universal
Thanks for asking. I am doing pretty well, but have been so busy I haven't had time to be on the computer.
Lauren
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Avatar universal
I think my viral load is down to about 57 or something like that. It keeps dropping little by little but just hasn't gotten to undectable as to the limits of the test. They told me that with this new test being able to detect to such low levels that I may not have actually been undectable during my combination therapy. In other words a "undetectable" level at that time wasn't necessarily zero or even below whatever the limits were at that time. I have some tingling and of course aches now and then but nothing I can say is definitely Tx related. I am trying to just take it week by week and at this point the only reason I am even that interested in becoming undetectable is so I can get TWO doses out of each vial. The Pirates, I mean my insurance company kindly informed me right after starting maintenance that the monthly cost of Pegasys was going to be $200 instead of the $50 it had been through Tx. The Pegasys was conviently (for them) moved to the third tier
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SJL
If you don't mind sharing, what is your viral lode? After 2 rounds of treatment, one being Peg-Intron/Riba(48 wks.) and the other Infergen/riba(56 weeks.)On the first round my VL was 1,000,000. I was undetectable both times on various VL'S, and on the Infergen,I started with 5,000,000, and when I finished the treatment, 56 weeks, my VL is 12,600,000. It's hard to figure out how this happened as I had 6 consecutive undetectables,on the infergen. This relapse happened within a period of 6 wks.

I am on Pegasys maintainence, but only .9 once a week. This is my second week and I think that depression has probably set in worse than ever. Other sides continue to be intense aching, and numbness and tingling in my right hand and feet. I have seen a Neurologist at the beginning of therapy and had all tests done, coming out with Carpal Tunnel?? (feet???)I am sure that that is not the problem and beginning to wonder if it is an effect of the drugs. Does anyone else have the numbness going on?

This site has been an incredible source of info and I thank God for it. At least someone knows what the therapy is like. It is certainly hard to describe to all people, as it effects everyone so differently.

Good luck on the maintainence and please keep us posted.
SJL
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Avatar universal
Hi, just read your post..alts and ast's can stay elevated, jump around do their own thing and it can have no effect on the VL or svr.....it may mean that there is 'action" in the liver, that "action" well indeed may be the killing off of those nasty hep C virons! Lets hope so!
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Rev...when Giddy starts his maintenance dose in January it will be just interferon, NO riba!!! Much more tolerable...it will also be for the long term..they already know interferon will not give Chris SVR or a non detectable status..so your proposed plan would not work for Chris.

Lauren, How are you? Nice to see you on the board...we had some computer problems, but hopefully they are fixed and we will write more often! How are things going? i will have to read your posts to catch up.
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Avatar universal
Will be doing Pegasus also. Was told this brand won't be so hard on me. But need to be well prepared this time I try the treament. New Dr. who care.
My other health problems are effected by the tx.
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Avatar universal
sjl,
I know there are several people here who can answer you, but I don't have any info. Sorry to jumo on here, and I hope you get the info you're seeking.
G and S-- can you guys (or anyone else with info) check out my ?? down in thread "just checking in"?
Thanks,
Lauren
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