Well here's what my doctor has agreed to (my 4th time treating)

[St. George]

I recently had an appointment with my physician and presented the Alinia findings to him.  He was very receptive and so I pushed the envelope further and requested to be put on a daily 30 mcg dosage of Infergen instead of the somewhat standard 15 mcg and again he was understanding.  The reason for my aggresive (aggressive) treatment strategy is due to my prior experiences with treatment.  The first round I treated with peg/riba 48 weeks to no avail.  I then tried 48 weeks Infergen/riba and again the same outcome.  As of recently 72 weeks peg/riba responded then relapsed 2 -4 weeks end of treatment.  So,  the new battle plan is to treat daily with 30 mcg Infergen, 1,200 mg riba and 1,000 mg Alinia.  I will treat with the massive dose of Infergen until I go undetected and then back down to a more reasonable 15 mcg  and  stay on the other dosages for the entire 48 weeks.  Also, I am pre-dosing with 1,200 mgs Lactoferrin and will continue on this amount throughout treatment.  I believe it was DoubleDose who was on this outrageous daily 30 mcg of Infergen and he went undetectable within a few short weeks.  If anyone has any thoughts(HR, JIM, etc..) I would love to hear them and mind you my doc approved  this regimen but I am still waiting to hear if my insurance will clear it.

[cruelworld]

havent you bought yourself some time with previous treatments? cant you
wait for better meds? you must really be backed up against a wall. man that sucks.
i wouldnt go through that treatment unless i was stage 4 and even then i might take a gamble and wait for new drugs. the battle plan seems solid though , enough poison to destroy everything in sight!  good luck man, thats drastic.
im stage 3 and my doc wants me to jump right back on it if i relapse. i told him hell no!  if i fail this one i am waiting for better drugs.

[jmjm530]

Thanks for thinking of me,  but sorry  I don't remember any of your stats, nor do you specify why previous treatments didn't work, i.e. did you respond and relapse? Were you a slow responder, a null-responder? Viral breakghrough? Were you on full dose? Etc, Etc. Therefore hard to present too many thoughts.

As to Double-Dose, I'll let him clarify, but my understanding is that he double-dosed one of the Pegs, and not infergen.

We did, however, have one member here, "Magnum", who did double-dose Infergen. Admittedly, it is only one case, but it read like a horror story. You can check out this thread  and try to find outhers in the archive: http://www.medhelp.org/posts/show/96560
I think Miles Keaton also did this high dose and also had a bad time. You can 'google' his name and check out his blog to be sure.

Again, only one or two people's story, but it would prompt me to look further into how others react with 30mcg of Infergen a day. And, then of course, the questions, do your specific stats (liver damage, etc,) merit such an agressive approach and does such an approach deal with the likely reasons your previous treatments failed.

Is your doc a hepatologist (liver specialist)? Unless your're dead certain on this routine, you might run all your stats and proposed strategy by one. Not really familiar with Lactoferrin, but if I was to theoretically treat again, say after a theoretical relapse, I might try pre-dosing ribavirin, which may (or may not be) right for you.

All the best,

-- Jim

[Lonestar823]

I don't want to sound negative but I believe both DoubleDose and Magnum failed to svr with this particular tx.  I seem to remember Magnum using the words "near death experience."  Both may have eventually gone on to svr but I don't believe they achieved it using these high doses of Infergen.
I personally only know of three people who have svrd on Infergen.  All three were the long haul, 72 weeks or more at the standard dose of 15 mcg daily.  
Continuing at minimum one year after clearing the virus.  I didn't know about this forum throughout most of my treatment.  After I did find it I had a really hard time finding anyone else doing the Infergen and very few doing the long haul.  Occasionally I would read nightmare stories regarding the side effects of it and most people were holding out and staying with the Pegs and would only ever consider Infergen as a last resort.  I never posted about the nightmare this treatment can be, first because I was still quite shy to talk much, then the brain fog was so hideous I had no confidence I would be able to write anything with any coherence and finally because I didn't want to frighten people who maybe had no other choice.  I think HR posted to you last time that he felt 15 mcg was quite bad enough.  
I'm really not trying to frighten you, only wanting you and your doctor to be quite sure this is what you want to do.  Has he considered the standard 15 mcg daily, pre dosing the riba and adding the alinia?  I was thinking about MyOwn.  She's a perfect example of someone attaining EVR, doing the 48 weeks then relapsing.  So, even if the alinia helps you attain EVR and you drop back to the 15 mcg Infergen right away, perhaps the 48 weeks won't be long enough for you. Maybe a longer, steady assault along with the alinia may be more effective for you.  I don't know, I'm only trying to be helpful.  On a more positive note I will add I've rebounded quite nicely with no after effects from doing the long haul.

[nygirl7]

Oh my God that sounds like it's going to be tough double dosing infergen - I too remember Magnum and what he went through and it was atrocious.  Have you considered just doing the 15mcg for a longer period before trying this?  That way you can at least see if you can manage the 15mcg and how bad those sides are before you double it up? Oh I'm just scared for you and none of it is my business but I know how much you wanted SVR - yet still...you've treated so much maybe your liver has gone down a few stages and it's not necessary to go all out?


Lonestar - My own only treated for 24 weeks not 48 then relapsed.

[Lonestar823]

Deb, I didn't realize that.  I don't know how I missed it.  This makes it all the more difficult for her, never knowing if she'd continued the standard 48 weeks she may have had her SVR.

[Tallahassee]

I almost double dosed Infergen (~24 mcg) for about 1 month, after due to fatigue and vision problems, reduced it to ~18 mcg daily.  But I started 24 mcg AFTER I had a viral beak through at about 10-11th month of daily 15 mcg with 1200-1400 mg riba (my weight was ~110 lbs).  I was total for 98+ weeks of Infergen.  All second year of my treatment I was on ~18 mcg of Infergen +high dose of riba (1200-1400).

Based on my long history of treatments failure and complete non-response to INF +riba, I grasped for this tiny straw -- I was given only 10% of possible SVR.  I had only 2nd stage fibrosis, but I believe I had somewhat faster progressing fibrosis without any underlying diseases or factors.

Well, anyway, I don't think I could survive double dose at the beginning of the treatment.

My first 3 weeks of daily 15 mcg Infergen I had ~104 fever and all "discomfort associated with the fever.  I was working, but I have a desk job... however, my brains were literally dead ... and I was completely unproductive.

Later, side effects (like tiredness) were increasing gradually over time, so it was not so noticeable.
I don't know what to recommend.  Be prepared with Neupogen and Procrit, or at least have a hematologist ready to chime in with his arsenal of prescriptions.  

I would say, good luck, and evaluate --- re-evaluate your condition daily ... you can always reduce to normal dose (15 mcg), if it will be unbearable.

One tip I can share: I was dividing my Infergen into two shots (morning & evening).  Sounds ridiculous, but I believe it was easier to tolerate.

I was doing the same during my prior treatments, when Infergen was given only 3 times per week (along and with regular Interferon).  I tried artificially to have as close as possible to have constant levels of Infergen throughout 24 hrs.

Good luck and all the best!

[Tallahassee]

Nice to see you!

I hope you are doing well!

[Lonestar823]

Really nice to see you too!  I'm home schlepping because of a snow & ice storm.  I feel wonderfully healthy Tall, aside from a little cold.  How about you?  Any news?

Also,

MyOwn, I didn't realize you had treated 24 weeks, but then I think I've read you are type 2 who only treat 24 weeks or less anyway.  Seems like I've read about a lot of type 2's relapsing after 24.  Do you think 48 would have made a difference? I know this is all old news to you.  I'm just trying to understand what may have happened with you.

[Lonestar823]

Really nice to see you too!  I'm home schlepping because of a snow & ice storm.  I feel wonderfully healthy Tall, aside from a little cold.  How about you?  Any news?

Also,

MyOwn, I didn't realize you had treated 24 weeks, but then I think I've read you are type 2 who only treat 24 weeks or less anyway.  Seems like I've read about a lot of type 2's relapsing after 24.  Do you think 48 would have made a difference? I know this is all old news to you.  I'm just trying to understand what may have happened with you.

[nygirl7]

Being a geno 2 I don't think anybody figured she had to do more at the time (although I think maybe she did 20 weeks I don't remember there was so much discussion about it at the time).  The only reason I extended from 48 to 72 was I've seen too many combo geno's like me have a hard time getting to SVR and I had the VL plateau at week 4 - 12 ... I wanted to make sure I got every single bit of guarantee of my odds that I could find.

I think now some doctors are standardizing doing 48 week for geno 2 but - that wasn't until very recently when they noticed the extraordinary amount of failure we've had with geno 2 treatment at 24 weeks.

That's all I remember but I don't see her on this thread so maybe it will help your questions.

[Tallahassee]

Ifeel good, very good!  I'm still concerned & hope for a complete bone marrow recovery, but I feel great, full of energy (and gas! ;-)), exercise and try to catch up with all the projects I was delaying.

Sad part is that we had to say good bye to our doggie ... and she was our family ... I really miss her.

I love snow!  especially here, in Florida, where nicely warm and wet! But I don't miss ice storm!! :-)

Be well & stay warm!!
All the best and happy Holidays!!

[wyntre9]

Myown is geno 2 and she completed the SOC 24 weeks for her genotype.

It's so sad that she relapsed.

wyntre