Infergen Torture

[Magnum]

In case some of you don't know, I was on 24mcg Infergen and 1200mg Ribavirin daily for 3 months. Doctor took me off treatment 2 weeks ago because my ALT & AST levels went from the 80's to the 700's. My urine was also very dark, due to Bilirubin imbalance.

This treatment is only for those who don't mind feeling like they're going to die. I DON'T recommend this for ANYONE personally. I was getting a blood test every three weeks and will have another liver panel today to gauge the swelling.

I would never ever consider this treatment again. Maybe it's okay at the normal dose, but I believe that the megadose I took for three months could cause permanent liver or other organ injuries. BE VERY CAREFUL!

I was a very strong proponent of Infergen at the beginning because I went from 2,700,500 count to 6000 in three months, but the horrific torture and agony is NOT worth it! I will now wait for my 5th treatment in 2008 with VX-950.

This is two weeks after stopping treatment. Here's What's happening to my body:

I itch unbelievable - I have a reflux problem - I shake like an alcoholic drying out - I'm still brain foggy - I feel at times that I'm on speed - terrible Insomnia, averaging 5 hour per night sleep. The Medicinal Marijuana helps. - No appetite, compounded by nausea (Medicinal Marijuana help) - Aggressive behavior. Yelling, pounding, name calling, throwing things.

My doctor now has me on Aciphex (pricey) antacid at 2 per day to see if it will counteract the Reflux.
My friends, if you are thinking about Infergen, ask your doctor MANY questions...

Magnum

[ezgointk]

Magnum,

I can totally relate to your experience.  I am on 37 weeks with 11 weeks to go on infergen 15cpg daily.  I cleared at 10 weeks but this treatment is absolute hell. What a butt kicker!!!!

[Magnum]

I'm not on Infergen nor would I ever consider it again. My doctor does not prescribe it for any of his patients anymore. I don't know why this subject came up again. I'm waiting for what seems to be a hopeless response to enter a clinical trial for Boceprevir because of my failed 4 treatments, but I plan to attack this killer again as soon as Boce is released.

Otherwise, I'm doing well and stable with what the last ultrasound results were described as "mildly cirrhotic". My doctor does want me to treat ASAP because of bridging. Bridging in his opinion will be irreversible after a lengthy period, even with Boce. And so I wait with the rest of you non-responders...

Mag

[nygirl7]

I will now wait for my 5th treatment in 2008 with VX-950. "

Wow word to the wise who wait on FDA approvals..........we've been waiting a long long time - if you have major liver damage do not wait before trying soc. I can't believe this post is from 2006 already!

[nygirl7]

I was like wait Magnum is doing infergen again?! Knew that could not be right he responded so badly to it last time.

I can only imagine some jokster bumped it up and MH took down the post - how do these whackos find these things to even do that with?

[susan400]

WHY is this post popping up 2 yrs later?  I can't see where anybody has made a new comment??  Susan400

[Bill1954]

So sorry to hear about your husbands slow response. It sounds as if his doctor is on top of things and is willing to help move aggressively forward. Although not an Infergen patient myself, I

[Rod Stewart Fan]

My husband just got the word that now at week 24 he still has a viral load of 228 so that doc has ordered Infergen. After reading all this I'm afraid he will not stay on it. Sounds much worse the Peg/Riba although the doc told us that the side effects were much less. Sure doesn't sound that way.

[roaming]

not sure if you will get this but he is a 1a so he is stuck with the 48 week.

[NYgirl]

PS I never ever had the fever or chills in the beginning.  I got them at week 28 bad and was pretty shocked!  They can really come at any time - although they generally get better after your body gets used to it. Of course, I had said all week long "I never had the flu sides" and bam...fever fever fever right the next shot!  Figures!

[Mister beagle bailey]

Sorry I just saw your post.  I will do shot # 16/24 this week as I'm 2B.  Some times I get a fever other times I don't, each shot is differs from the other. Yes, he could still get a fever going forward.  However, I found the first shot to be the worse.
What geno type is he again, sorry with this brain fog I for get.

Beagle

[NYgirl]

Well I don't understand why he wont take two tylenol on shot nights...if he's having the "flu" sides and feeling like that what is he saving them for?  LOL

I take Ambien every night to help me sleep.  It doesn't leave me groggy at ALL the next day, just helps me gently fall asleep. IN fact most often I don't even feel "tired" but when Iput my head on the pillow I am out like a light. It's REALLY helped me a LOT.

Also at the doctors suggestion I started taking an antidepressant BEFORE I started taking the treatment. There is a very big problem with depression while taking Interferon and so I agreed to take the Paxill.  It made me groggy at first but ended up helping me SO VERY MUCH.  The Ribavirin really caused me to have "riba-rage" and I can't imagine what I would have been like without them!

I take them at night too so most times even though I wake up a LOT during the night...I am able to fall right back to sleep.

[NYgirl]

The treatment Magnum is on is NOT the typical course of treatment that we take.  He tried previously to get rid of the virus and so they put him on the "Infergen".

Most likely your hubby will be taking Interferon and Ribavirin.  There are many, many side effects and well he might not have the "flu like symptoms" but he might get the anemia. Or he might not get the anemia but might have problems with his hair falling out...on and on.

Everybody IS different with treatment but one thing I don't think anyone has ever really overcome is the exhaustion that comes from the treatment.

I'm glad he has a great outlook but I hope that when one of the sides pop on him it doesn't destroy him mentally and cause him to want to stop. If that should happen remind him of all the skinny little weak girls like ME in here who persevere no matter how horrible the sides can be (and I've had some doozy's!)

Best of luck

[FlGuy]

He will be on a healthy (fairly large) dose of ribavirin.  Although side effects (sx) vary by individual, most people will feel some effects.  Hopefully, hubby and doc will work out a schedule (every 2 weeks, or so) for lab blood work in the form of a cbc (complete blood count) to track the effects of the peg/riba on the blood components.  Try to walk away with copies of the results each time so you can follow along with the doc on progress.  It may be a good idea for him to tune in here so he can get an idea of what people go through.  Can't tell you how important it is to have the support and undestanding at the home front.  Good luck to you both.

[hubbyandme]

Thanks, you are right.  My husband won't be on the same treatment as Magnum.  He's on Pegasus 180MCG once a week and six Ribavirin 200MG/daily.  This is all so new to us.  Can be confusing, this group helps a lot!  K

[roaming]

He will not take anything before the shot. He wants to save it for as needed or not at all. He is not allowed much to begin with. 1000 mg a day. So he wants to be sure he can when he really needs it. So far he is still (mostly) sleeping ok. The dr office said to use benedryl. Have you tried this? Do you have any idea how long the effects last? He hates to feel groggy in the morning.

[NYgirl]

Is he taking tylenol BEFORE the shot? I've found it helps a LOT.  And remember as you body acclimates to the poisons going in...it does get better. It's a huge shock on the system but eventually...your body has the ability to be able to get used to it so the fever should go away.

I think Beagle is on about shot 13 because he had 9 left the other day when I was talking to him and he is a geno 2 so only 24 weeks of treatment.

[debdeb47]

Hi, hope you're starting to feel better, ha ha.  I'm 8 wks post tx Peg/Riba, and am having similar problems.  I'm itching literally from head to toe; scalp excema to athlete's foot, with some yeasty thing other places, plus dry skin.   The nausea is mostly gone, the appetite is returning, and now I have to avoid the med marijuana.  I'm allegic  to the universe.  I'm still argumentitive and difficult, still depressive, still exhausted, and I got a vicious cold 2 weeks post tx, but only after a violent pet allergy attack and asthma.  And my hands and finger joints hurt and are weak.  Of course, my tx was pretty lightweight, and I am a 2b, so it wasn't so bad, but it sucked.  Feel better.

[roaming]

What shot are you on. My husband had a horrible fever for the first 2 shots and a little lower with shot 3. He just did his 4th last thursday. So far not much fever this time. So it seems like he is adjusting. (?) Could he still get bad fever going forward?

[Magnum]

Thank you all for your words of encouragement. I hope I'm not permanently damaged. I guess I've been through a lot physically all my life with arthritis and other things like multiple hip replacements and back surgery, but let me tell you, nothing was this torturous.

I'm 6' and weigh 190. If this brutal torture can do this to me, imagine what it can do to a female or male that weigh 150 lbs. or less?

Do yourselves a BIG favor and DON

[FlGuy]

I saw your comment to Magnum and the fact that your husband starts tx later this month.  I'm not familiar with your name as a poster but I wanted to point out that Magnum is on a different, and more brutal, course of treatment than most people.  If your hubby is a first-timer on treatment he likely will not get the same meds, or doses, as Magnum and Susan have been discussing.  Unless I've missed other posts of your.....
Good luck to you and hubby.

[FlGuy]

I feel for you two going through what you.  I think of both of you often and hope things go your way.

[Mister beagle bailey]

How are you doing tonight,any sxs?

I have a 100.2 fever, swollen ankle still and tomorrow will find out my HGB AGAIN along with my procrit shot. A side from all that I'm fine. LOL

Beagle

[dyce]

That is good to hear there BB! Howd your shot go last nite?

Dyce

[Mister beagle bailey]

I just saw on the early news this morning that the VX will hit the market in the early part of 2007.  They said all trails are showing much promise.

Beagle