Worth the torture?

[Magnum]

I'm a three time non-responder. Most of you are going through are have been through one treatment. You can't imagine three treatments unless you've gone through them. Now, the doctor wants me to consider a fourth treatment with Consensus Interferon and Ribavirin.

Has anyone gone through or know anyone who's gone through this treatment? He said the non-responders have a 37% chance of responding to this, including those that have not responded to Pegasys and the traditional treatments. By the way, this is a shot per day. He did mention that after a while, if it does not work, he will take me off it. Should I proceed?

Thanks,

Magnum

[Magnum]

Thanks for all the info. How far away do you think the clinical trial is for the Ribavirin replacement? Isn't that something you or someone else mentioned? Luckily, through all my torturous treatments, I was able to tolerate the full Ribavirin regiment and didn't have to be on any tranquilizers, although my temper at times really flared and I railed at friends and relatives.

The doctor said that even though it's been almost three years since my last biopsy, he wants to wait before doing another one. He wants to wait and see how the Infergen works out first. At this point, since my last liver panel tests came back normal, with ALT and AST levels at 80 and below, he feels I can afford to wait, but he does want me to get rid of this once and for all if that's possible. Decisions, decisions, decisions....

Thanks,

Magnum

[DoubleDose]

Nimzovich has provided you with the information on Infergen (Consensus Interferon).  Because it is a more multi-faceted interferon, it seems to work more effectively in many patients.  
The reason I did the first two weeks (induction dose) at a 2X /day dose of 15 mcg. per dose, is because of several German and Japanese studies that I reviewed with my doctor at that time.  They were using a 27 mcg.  and a 30 mcg. dose/day in the two studies, for the first month, in order to get difficult responders to undetectable rapidly.  I got undetected in two weeks!  

I found the daily infergen EASIER to tolerate than the daily Intron (Schering) that I was using for the prior 9 months.  As I said, the Ribavirin did me in.  I stopped early, and could only use half the prescribed dose for the last four months (no Procrit allowed in 1998), so the Anemia got too dangerous to continue.

I really am puzzled as to why the makers of Infergen (Amgen / Intermune) have taken so very long to get a weekly Pegylated version of Infergen into clinical trials!  Their interferon is probably the best of all, but they do not yet offer the advantage of virtually constant levels in the bloodstream, and only once weekly shots...which are the two chief reasons the medical community moved full force to the two Pegs currently in use.

I have always believed that if they had Pegylated the Infergen first, it would be the current standard of care, and would be easily the best drug available for HCV.

Still, the daily 15 mcg. Infergen is hard to beat, if you do not mind the inconvenience of daily doses.  It is the best strategy available for the partial responder, or relapser to Peg Interferon.  It still must be used with the optimal Ribavirin dosing to be effective.

Good Luck!

DoubleDose

[Nimzovich]

The maufacturer of Infergen is Intermune. Infergen was originally developed by the giant biotech Amgen who licensed the rights to it to Intermune. Their web site is http://www.intermune.com and there is also an Infergen web site www.infergen.com. I believe Infergen is the only FDA approved treatment for non-responders. I have also heard they have (will have?) a pegalayted version in clinical trials. Intermune is currently running a clinical trial with Infergen plus a different interferon product of theirs called Actimmune (interferon gamma). Actimmune was previously tested in a clinical trial as an HCV anti-fibrotic (and unsuccessful) and I think the idea now is to replace the Ribavarin component of the Infergen/Ribavarin therapy. If memory serves the FDA approved dose is 9 mcg 3x times per week, but the (off-label?) does of 15mcg daily seems to be mentioned often. My hepatologist mentioned an aggressive German protocol that doses Infergen at 27mcg. Note the "standard" interferons from Roche and Schering that most of us take are proteins that occurr naturally in the body. Infergen, by contrast, is not a naturally occurring protein. It was designed to capture the best (hence "consensus") components (amino acids) of many different interferons.

[Magnum]

Are you saying that Schering is not the manufacturer? What company is? I'd like to read more about it.

How about the side-effects? Just as brutal? You mentioned a clinicla trial. Is this a varied or altered type of Infergen clinical trial? Thanks for you help...

Magnum

[snook_man]

There is a woman on another forum I frequemt who is on her 6th, tx. She has tried them all!! Right now she is on infergen, and CLEAR!!! She has been clear for 5 months now, and will continue daily infergen for two years..
If you ask her whether or not it is worth it, EVERYTIME she will say yes!!!
Good luck with whatever you do man.

[cougareyes]

Without insurance I know you can do only what you can afford to  you to do. Specialist and biopsies are expensive, if you can swing one it would be advantageous for you to know the level of damage your liver is in.
In the mean time your have to live a liver friendly life, 1st off - NO ALCOHOL. That's what did my damage, the drinking w/ the hep c. Check into some of the liver support supplements; one combo includes milk thistle, selenium, and alpha lipoic acid.
It is an expensive treatment but the drug companies and other sources have programs that might be able to help you. Check those sources locally  and see if you qualify to get help to get the other test you need. Pegassist and the Be In Charge programs are run by the drug companies for the treatment meds.  Good Luck

[friole]

Greetings and welcome to the forum.  There seem to be a lot of people from Florida on this forum and they can address help available in Florida better than I.  THere are several things available to you to help with the meds.  Both drug companies that manufacture interferon and ribavirin offer it free to qualified individuals.  There are also lots of trials for treatment naive (never treated) patients.  Please start with this websight - Janis7 - and click on the topic for help with insurance and free meds.  

http://janis7hepc.com/

Whatever you do, don't do nothing.  At least find out where you stand and the state of your liver.  You are very young and have an excellent chance of clearing the virus.  Good luck

[cuteus]

THe thought of having to take these meds again is not appealing in the least! You have a few months to think things out, and I would email Dr. Cecil, just for the heck of it, to get his take on re treatment, he deals with hard to treat cases and might offer some insight on svr rates in his private practice.
Perhaps you can get in some of the ongoing trials with the new meds?

[DoubleDose]

'a total killer' refers to my first two weeks of infergen, which I took twice a DAY, at the highest dosing possible, 15 mcg. each.  I had a hard time walking, and was dizzy, shaky, and sick around the clock, and felt like I was in a semi-twilight state of ming....almost like slipping into a coma.  Needless to say, those first two weeks at 2X/day, I did not work, and tried not to drive (I still managed to get a few things done though!).
When I dropped back to once a day it seemed like heaven!!!!  No problems tolerating the infergen after that, just the Riba-induced anemia.  I went down to less than 8.0 Hemoglobin count at one point...even with the Riba cut in half!!!!

Fun memories!!!!

DoubleDose

[ASmile4U]

I asked this same question a while back...not too many people here on Infergen.  Southernboy recently stopped Infergen tx, he can offer a great deal of information...hopefully he will stop by soon.
I made the decision to start Infergen after being a non responder mid July.  Haven't yet started, waiting for platelets to bounce back from initial Peg/Riba tx.  Doc did not want me to do 48-72 weeks on Peg and thought this was the best alternative for me...we'll see.  He gives me a 50-50 shot at SVR...I am female, recent infection and in my early 40's.  Looking forward to starting...I'm a 1, initial VL 1.9 down to 44,000 at week 12...VL was 886,000 a couple of weeks ago when tx was about to begin, however platelets dropped to 116 that week.  So, I wait to see what this weeks labs bring....  :)

[scotty-in -florida]

Check this out ..I am a 40 year old male,I was told i had Hep C 15 years ago . I have had no symptoms except a lot of broken blood vessels on my chest .Looks like little red spider webs,Anyway I have no insurance and currently i have had no biopsy or viral load test.What steps should i start taking,Is it to late for me?should i just continue what i have been doing ?which is noting.I live in new port richey ,Florida

[DoubleDose]

Infergen can be extremely effective, especially when used on a  a daily basis, and at the higher level (15 mcg.).  During my first go round of tx, I could not get undetected using regular Intron, even at high doses, every day, so I switched to Infergen, and did 15 mcg. TWICE A DAY for the first two weeks (a total killer!!!!), but got undetected immediately.  I switched to once a day for the next five months (which were months 9 - 14 in my overall tx) and stayed undetected until the end of tx.  My problem was the Riba, and because of low red cells I had to reduce from 1,200 mg. /day to 600 mg./day, eventually, and also had to finally stop tx because of falling Hemo counts.  At the time (1998) they were not using Procrit.  I relapsed in one month after stopping.  (I subsequently obtained SVR by using weekly Peg-Intron at a very high dose, and full Riba. with lots of Procrit, for 18 months.  Finished in 2003)

So my advice regarding Infergen is this:  Use as high a daily dosage as you can humanly tolerate.  Keep the Ribavirin at the highest dosage allowed for your body weight (use Procrit as soon as needed, and liberally), and go for an extended duration.  For relapsed, or failed Type 1's, I think going for at least 12 to 18 months AFTER getting undetected is necessary to insure the best odds of SVR.
Infergen can be very, very effective.  You just need to do the full program:  Duration, Dosage, Full Riba, and a strong will to succeed.

Best of luck to you both!!!!!

DoubleDose

[scotty-in -florida]

what do u mean A TOTAL KILLER?

[jmjm530]

See a heptologist (liver specialist) and get a liver biopsy. It will tell you how much liver damage you have. You may need to treat right away or you may have time to wait. Without the biopsy you're flying in the dark. This also might be a good time to start researching insurance policies. Treatment is very expensive without insurance although financial assistance programs exist.

-- Jim

[jmjm530]

If you haven't already, you both might want to check out a post below "New treatments. New treatment decisions."  I don't know the particulars of either your your cases, but not everyone needs to re-treat.

-- Jim

[bobina]

Again Jim thank you so much.  I have read enough on here to know you have a wonderful opinion and are one caring person who is on here everyday and has a lot of knowledge about Hep C.

To answer your ?

I think it was called rebatol .. put in IV made me sleepy...at hospital.  prescript is promethazine.. one every 6 hrs it says.. I took one after I got home from hospital.. been ok with nausea since.. not very hungry tho..  

Yes, I eat meals before taking copegus.. high fat you say, meaning high protein?  

I drink over a gallon of water a day.  Just a good habit.

I weight 130 lbs 5'6'

Yes, I have copies of all tests.. need to get my liver biopsy yet.

Thanks for your help.  I will keep ya posted on my progress with wining this fight!  Sure helps to know others are doing it too.  

Thank you again!

Tina

[jmjm530]

Tina,

Hopefully you realize that as a genotype 2B you have an EXCELLENT chance of being cured. On the average, 80 per cent of 2B's get cured with 24 weeks of treatment. Because of this, it's not unusual for them not to be biopsied pre-treatment. I asked about your weight because of the riba dosage but 800 is correct for 2B's.

I was just suggesting to take the ribavirin with a little fat because of the nausea and other reasons. In other words, don't take it with something too light like an apple, unless you smear some peanut butter on it. :)

Personally, I was instructed to take the ribavirin at the end of my two largest meals each day -- regardless of what time I eat as long as the meals are at least 3-4 hours apart.

Anyway...welcome to the group. Like I said you are very, very lucky to be a 2B. Just hang in there and you'll be cured before you know it.

-- JIm

[cquest]

What kind of entertainer are you Mag? just curious...we could use a Comic in here or maybe a Magician would be good...make this thing disapear for me will ya?
Cin

[cuteus]

has your bloodwork also included checking for folic acid(folate) and Vit B12? these b vitamins are key in hgb processing also.
I recently saw an article on some genetic link to the  non response to treatment for anemia, but I did not bookmarked it. I have so many bookmarks already...I don't know what to save anymore.

[PasoPerson]

Don't feel bad.  One of us on here, I will let them speak for themselves, is on treatment #7.  I cannot even imagine that, but it happens.

We are all with you, my friend.  Study long, make your decision and go with it.

[cuteus]

do a search on therapeutic doses for b12 and folic acid, some interesting articles linking them to not only cardiac health but also to depressive illness will come out. It seems the serum level of these vitamins might indicate if they are getting absorbed effectively.
this link has some dosages suggestions.
http://www.wholehealthmd.com/refshelf/substances_view/1,1525,887,00.html
folic acid can not be sold in higher doses than 400mcg, per FDA regulations, but it seems that 1mg is the therapeutic dose recommended.
I am surprised at the research on these vits and Mental Health. I used to take a B-50 formula, but the folic acid was still 400mcg. If your levels are low, maybe a script for a higher dose can be obtained.
I can't get over how those of you with such low hgb can even find the strength to breathe! It is so debilitating, I feel for you guys, and pray that it is not permanently detrimental to your health.

[jmjm530]

Thanks for reporting back. I agree, people sometimes post their issues, get advice and then disappear. Guess I've gotten used to it. Part of the problem is the format here where everything is so mixed up in a single thread and where newly responded threads don't automatically pop to the top like with most discussion groups. Recently, I read a thread elsewhere about someone's tx progress. The second to last post was the last shot. The last post was six months later by the same person declaring an SVR. All in one thread. That makes sense.
.
Don't have much else to say on your hemoglobin issue. I have read that some people just don't respond to Procrit. The culprit may not be solely the riba, but I believe the interferon can also have some effect.

I forgot how much Procrit you're on now but I know some people are taking more than 40,000 units/wk. Cuteus' posted a number a while back with a qualifier because she wasn't sure. I believe however that the number she posted was correct.

Hope you feel a little better. Treatment can be a real *****.

-- Jim



-- Jim

[bobina]

Thanks Jim!!!  This treatment is a ***** so far.. I just started tooo!  Friday at noon.. I am 2b with 50 million count. grade 1 stage 3. 47 yr old female in Treasure Island, Florida.  

I thought I was prepared for all of this.. NO way!  I didn't feel any sides til 1 on Sat. just nausea.. then.. but.. boy was I wrong.. I started to throw up.. on the toilet at the same time and total chills soo bad I could not even imagine.  My arm/leg went numb or tingy and I was totally scared.. so I called my doctor after 4 hours.. and he asked me to go to emergency for observation.. I really just wanted something to stop throwing up.. getting all the sides at once was more than I could handle for that long.   Long story short.. I got something at the emergency.. made tired too.. and was released by midnite.. ha! It was a harvest moon.. and emergency was packed too.  I have meds for nausea now.. and I am asking today for anxiety irritated behaviors.. WOW.. I know I can do this and I know the first couple of weeks are the worse.  I just really had not idea just how bad I would feel right off the batt.  

I want to thank all of you!! I just found out on 7-19 I had this.  I am so happy to be on treatment and I know I can beat it!  I am on 180 pegasys and 800 mg copegus.

So... I am very scared about next shot on Friday.  But.. I know I can get threw it.

Bless you all!
Tina

[jmjm530]

Tina, you're one brave lass with one positive attitude ! If I wasn't before -- after six months in this discussion group and others -- I'm definitely convinced women are the stronger sex at least when it comes to suffering. :)

I think you have nowhere to go but up with the side effects. For some people the first shot is the worst so let's hope that's your experience.

Make sure to drink lots of water (half your body weight in ounces of water), and take your ribavirn with meals/food that has at least a moderate amount of fat in it. This may help with the nausea. BTW do u remember what they gave you for nausea?

Anyway, it's  hard to say what is causing what side effects when you're on riba and interferon, but since you had a strong initial reaction, hopefully your doctors will monitor your blood weekly for the next 12 weeks. Among other things, they should keep their eye on your hemoglobin level. Even if you don't know what the numbers mean, try and get copies of all your blood tests so you will have your own record. BTW how much do you weigh? I'm not with Weight Watchers, it's a dosage related question. :)

Anyway, welcome to the discussion group. We're here to help each other, so ask away if you have any questions.

-- Jim