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Avatar universal

Starting Infergen Friday

I am starting the Infergen regimen with the daily shots and ribo on Friday.  Are the side effects worse on Infergen than on Peg?  I did 48 weeks of Peg and Ribo,undetectable at 24 weeks and relapsed by 6 mo's after end of treatment.  I'm a type 1 (I don't remember if it's a or b...in fact, I don't remember a lot of things...).
Mike.
12 Responses
173975 tn?1216257775
Sorry to hear you relasped, Mike.  I don't know about interfergon but daily shots sounds difficult.

If you can check your labs and post your genotype it would be helpful.  I do know that for genotype 1A, if you don't reach UND by week 12 but do get there by week 24, many people recommend extending treatment to 72 weeks.  That's what I'm on as I didn't clear until week 17.

Did you do 24 weeks or 48?  And, FWIW, I think it's helpful to read and learn as much about your disease as you can.

If you post your stats I will send links to the 1A studies.

wyntre
Avatar universal
While on pegasys, I had a 3 log drop the first month. My beginning vl was 3-4 million and lowered to10 IUL at 24 weeks. My dr switched me to Infergen from pegasys. At the beginning of my daily Infergen shots the flu symptoms were worse than when I started on pegasys. It took about 2 months to get use to it. I started taking procrit which helps the anemia. Yes you will get used to the daily shots. It only took 1 month and I achieved UND. Once I achieved UND my dr said I would need to be on infergen for an additional 36 weeks for a total of 60 weeks (pegasys/infergen + riba). Sorry to hear you didn't clear. You have a good shot with infergen. Hang in there.

Happy Holidays.
Avatar universal
I asked the nurse today and she said I was a 1A. My biopsy last year was stage 2 and I've probably had it for 30 or more years....In looking at my past labs, at my first blood test after starting Peg I was at 823,000.  At week 12 I was at 213, undetectable weeks 24 thru 48.  Six months after the last shot I was back up to 1.4 million.  I was taking 120 mcg of Peg (reduced from 180 because of low blood counts, although I usually did 135 instead of 120...fudged upward a bit.) and 1200 mg of Ribavirin a day.  My doctor is putting me on disability again, which I was on for the second half of the last treatment.  I handled the side effects ok last time and I want to be in the same situation for this round, although this time I will try to excercise more, ride my bike, etc.
Mike.
Avatar universal
Thanks.  I tend to have euphoric recall and don't remember how bad I sometimes felt.  Today I've been dizzy all day with kind of blurry vision and little explosions going off in my head and I'm not even on any medications....sounds disastrous doesn't it???  I've felt like this before though, so I'm not really concerned.  By tomorrow it will be different.  As Rosannadannadanna used to say: "It's always something".... The Peg and Riba seem to have really exacerbated my memory loss, though.  I hope it gets better after I'm all over this stuff, maybe a year or two later???  The good part is, I can reread all my good books, so I just have to take the good with the bad.
Mike.
173975 tn?1216257775
Cigaso sounds like he's had experience with both therapies. which is very helpful for you.

SInce you didn't get UND by week 12, did your Dr. discuss the extended treatment with you?  I'm just curious, coz I had to bring those studies to my Doctor's attention.  As a result, I'm doing 72 weeks.

Cigaso,  so you were a slow responder, as well?  (Not UND at 12, but UND by 24?)

wyntre
Avatar universal
The light headedness, dizziness and that faint feeling went away 4 weeks into my weekly procrit shot. You're right it is always something. I would talk over the little explosions with your dr. That doesn't sound too good. You may also get nausea. Everyone is different. Enjoy your books and stay in touch.

Wyntre9,
Yes,I am considered a slow responder. My dr wanted to put me on Infergen at 12 weeks, but because of my insurance he waited until 24 weeks. My insurance enlists a review board and they really suck. If I stayed on pegasys I would be doing 72 weeks, like you. You know what's really funny (not haha). When we were first dx with HCV and told we would have 48weeks of tx, that seemed like a long time. Now we're looking at 60 and 72 weeks respectively. 48 weeks now sounds like a short time tx.
173975 tn?1216257775
That's a shame, Cigaso.  The power these companies have over our lives is unconscionable.

I wish you best of luck with the infergen and please keep us posted as to your progress.

My (old) gastro once mentioned there were alternative treatments if the peg/riba doesn't do the trick and maintenance dose with infergen, I think, was one of them.

It is ironic how from where we are 48 weeks now sounds like the 'short' tx!

Are you doing infergen daily?  Are the SX different?  How many more weeks for you?

PS - I'm 1A, slow responder, on 72

wyntre
Avatar universal
Well, I did the first shot last night and it was rough...I had nausea and the shakes really bad.  They started about an hour or two after I went to bed, maybe 3 hours after the shot.  It was actually kind of scary, since I never experienced anything like this on the Peg.  My wife layed her hand on me (doing Reiki without meaning to, I guess) and that helped me.  Eventually I stopped shaking and tensing up enough to actually sleep some.  I'm sure beat today, though.  My treatment partner from last time is coming over today to hang for a bit.  She's still SVR - cool.  So, having gone through the shakes and nausea and still being ok today (albeit tired), I reckon I can do it again and again, like it or not.  The ribavirin is a little different, too.  It's Ribosphere and comes in a capsule instead of a pill, although it is supposed to be the same chemical makeup.   I'll keep you posted on my progress.
I'm a 1A and on the 72 weeks of daily 15mcg of Infergen and 1200mg of riba...(jeez, only 503 shots to go.....that's too many, so I'm just going to look at it like it's only 1 shot, just for today.)
Mike.
173975 tn?1216257775
WOW!  Daily injections for 72 weeks.  I'm shaking my head in awe.  

TTTT, I don't think i could do it.  Maybe for a first time TX, before I KNEW what was in store, but, now . . . . after 54 weeks of weekly peg . . . . . heck, half the time i don't know if i can finish this TX and i have only 18 weeks to go.

Manx, so glad you have someone to help you get through this.  I'm single and while my birds are a great comfort, they're not much help with soothing the nausea. *LOL*

Also glad you're on Db during this.  You started on my one year anniversary (almost).  12/23/06 for me.

cigaso,

Hearing that your Dr. wanted you on interfergen after 12 weeks coz you were a slow responder really gives me pause as i wasn't UND 'til week 16 and my Dr. never mentioned anything about that as a possibility.  Of course, I also had to bring to his attention the fact that slow responders tend to have better results with the 72 week extended TX.

Guess all we can do is hope for the best and try to keep going.


wyntre
Avatar universal
My Husband was a relapser (1B) at one year post treatement. Big shock since we had reason to believe he was done with this disease. He started on Infergen (15 mcgs) 6 months of daily injections, and then every other day for the remainder of 48 weeks. This treatment was extraordinarily tough, so stay on top of your labs, and I would seriously question the daily shot for 72 weeks.

My husband is still clear 18 months after his last shot, so we're comfortable using the word "cured" now. Good luck to you, it's a long journey and you'll need a lot of support during this time.

Take care,
Debbe
Avatar universal
Last night was better.  Here's my schedule: day1, 600mg Riba at 10:40 am, 600mg Riba at 8:30 pm, 15mcg Infergen at 9:00 pm.  I had a really bad night.  day2, 600mg Riba at 10:15 am, 600mg Riba at 6:00 pm, 15mcg Infergen at 9:05pm.  I didn't have the shakes last night, just had to get up to pee about 3 times.  I slept pretty good.  I also use the breatheright strips to keep my nasal passages open, which helps.  So day 2 was much much better.  I woke up with lots of pain in my back and thighs, but after I got up I took a vicoprofen which helps immensely.  So right now I feel pretty good.  I'm really glad I didn't have to go through the same tremors and stuff from day 1.  I'm going to track my drug intake so I can see how my schedule affects the side effects.  Of course, I can't be sure it was just the interval, but leaving 3 hours between the Riba and the shot seemed to lessen them.  Anyway, I'm encouraged by how I feel today as opposed to yesterday.  Getting some sleep really helps, plus I drank a lot more water yesterday.  I'll keep you posted.
Mike.
173975 tn?1216257775
Another insurance 'review board';  like the one in CA that denied the LT for the 17 year-old girl despite the fact that 4 doctors from UCLA had recommended the procedure on Dec. 11.

This is so sickening.

At least in your case, the decision wasn't (immediately) life-threatening, but HOW dare these bean counters over-rule your doctors treatment plans for you!

So instead of doing 72 weeks, you're forced into 84?  Did I do the math right?  24 weeks of peg/riba and now 60 weeks of interfergen??????

wyn
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