Infergen treatment OMG!!!

[agatha56]

Hi everyone.
I went ahead and started the infergen txs 8 days ago and I can say that I have never been so sick
in my life. I stopped this am. I picked up the pills and put them right back down. I have been severely
nauseated with stomach cramps. I have been unable to eat Only water goes down. Sleeping 16 hrs a day.
I am not kidding, I am definately going to have to wait on the new meds, There is no way I can go thru with
this hell I am in. I cant even stay in the upright position to write much here. Anyway wanted to let you good
people know my experience with INFERGEN,

[Magnum]

For what it's worth, my Gastro said he will not use Infergen on his patients anymore. This tells me I'm not the only one who went through a nightmare and near death experience with it. As Susan said there are different side for different treatments. Everyone experiences the side differently. However, in my opinion, why gamble? If you can wait for the PI's I would stay clear of Infergen. Otherwise, it’s up to you...

Magnum

[susan400]

I've done Infergen 3 different times.  It was hard, but actually, I didn't find the side effects all that much different for me than regular treatment.  I've had horrible sides from regular treatments w/Peg-Intron and the Ribavirin and on many of my other treatments.  I just think that with any treatment one chooses to do, it's really just a gamble.  You don't know going in whether you'll get horrific sides, or mild sides.  You don't know whether you will clear the virus, or not.  You don't know whether you will be able to work, or not.  You don't know whether you will lose weight, or gain weight.   You don't know whether you will be so depressed that you are to the point of feeling suicidal, or if you will not need any A/D's or not.  I don't mean to lecture, but I've had SO MANY years of this cr*p and I do think that I've been through a wide gambit of various treatments.  I've gone through different sides on different treatments.  Worked at my job for the 1st 4 of them and then, got too messed up on brain fog to continue to work.  I've had problems in the earlier treatments with extremely bad depression (but didn't like A/D's), so, somehow muddled my way through it.  In my past few TX's, I went into it, knowing what to expect and found that I now have ways to handle the depression before it gets to the extreme lows and I've managed to avoid A/D's.  I realize alot of people need A/D's and handle them well.  I can't handle the additional side effects that they have on my body, so I choose to do w/o them.  Anyhow,  I totally understand the side of Infergen.  The 1st time I tried it, it was relatively new, back in 1998.  I did it again, on another treatment where it was combined with a different interferon (I think it was Gamma/Actimmune) and the last time I did the Infergen, it was with high dose Riba at 1600mg a day.  Unfortunately, I have a VERY RESISTANT strain and unlike many people who do clear, I've not yet reached that point.  I don't want to discourage anyone from treating.  I still intend to treat again and I've done it 10 times.  I guess I'm just a glutton for punishment!!

Susan400

[can-do-man]

Might be true magnum but deb being a female with a weight of around 100lbs against a male that weighs much more i would think make a big difference, anyway my hat goes off to anyone that could endure daily Infergen for that long. i'm sure not affraid to say i couldn't do it. Best luck to you on your next tx.

cando

[can-do-man]

Agatha you should start feeling better soon, waiting for the pi"s is a good ideal, as for DebC, yes shes one tough cookie and like trin said a "crazy Italian".

Doesn't matter whether 15 mcg or 24 mcg daily going thru that for 72 weeks would be pure h*ll................. Best to you

can

[Magnum]

Deb night have made it through 72 of Infergen at the standard dose of 15mcg daily. The doctor had me on 24mcg daily. I withstood it for 4 months until I became Jaundiced. If I would have tried to continue for 72 weeks, I would have died.

I've said it before and I'll say it again along with my doctor saying it. Stay away from Infergen!!!!!!

Magnum

[sunshines76]

Agatha, what you've described happened to me during the first 3 days of being on infergen. Also, during the first 2 nights I couldn't sleep at all, as my body was in horrible pain, I couldn't find any position to stop that pain, took some serious painkiller just to be able to fall asleep - and even that didn't help much. I would stay up till 5 am in this pain and then fall asleep completely exhausted. But the third night was a lot easier, and then most sx were gone. I have experienced the same pains later only once - when I had to take my kids to ER at night, so ended up taking my infergen shot 1 hour later than usually.
Later, when I was closer to 20 weeks I had my hemoglobin below 8, I was told to stop riba for a week, but not infergen. It helped, they put me back on my regular dosage of riba in a week. Now I am closer to the end of tx, and I was lucky to not have too many sx. I am still anemic, but they manage it with riba reduction. I have to stay on tx till the end of August. And then, hopefully, I will never have to go through this again.

[agatha56]

Yes Trin we will. Have you heard of what the sides are like on the PIs? I am scared to death now to take meds. This has really been a horrible ride for me

[Trinity4]

Yes, she got her SVR but that stuff sent her to the depths of hell.  It's been a year now I think and she feels pretty good overall.  I mean what can you say about us crazy Italians hey?

Donnieraye had to stop too.  Same type of side effects and I think her recovery has been slow but she had some other issues too.  She wasn't completely recovered from soc and jumped into Infergen so it kicked her butt pretty good.

Take your time and let your body heal.  Looks like you and I will be jumping on the PI train together.  Last stop, SVR land.

Trin

[agatha56]

I should have listened to Magnum for sure. I am wondering how long it takes to clear this poison from my system. I am sweating very badly and feel the worst I have ever felt in my life. I want this virus out of me but I honestly feel that this stuff can kill you. Did Debc clear? She must be a very strong woman to be able to do this tx for 72 weeks. My doc had said that the sides were the same as riba/inf, Please.Not even close. I didn't feel like I was dying on the riba/inf. Worked full time. So back to square one. Just can't do it.

[Trinity4]

I don't know how she did it either nygirl.  Here I was bellyaching on my tx and she was going through pure hell, getting transfused, taking Procrit and Neup plus daily Infergen shots.  I couldn't have done it.  I have to work to keep my health insurance and no way on earth I could have worked and that's what Deb says too.  At least with pegylated interferon and ribavirin most of us can work.

Trin

  



  

[nygirl7]

it sounds very familiar to what DebC and Magnum and others have gone through.  I'm sorry it's just horrible - I don't know how Deb made it 72 weeks I swear to God it sounds so horrible!

[Trinity4]

Oh my goodness agatha.  At least you know early in the game.  What you've described is exactly why I wouldn't do Infergen.  Too much misery for  too little odds of success.

Feel better soon.

Trin