Aa
Infergen
Anyone out there been on Infergen? (if so, what kind of side affects). My Hep wants me to start this because the Pegintron I was on has not eliminted my viral load after 9 months. My gastro guy cut me back to maintance does, but my Cryoglobulinemia is coming back already.
Hepo says the Infergen is for non responders, and has a greater success of eliminating the viral load.
Hepo says the Infergen is for non responders, and has a greater success of eliminating the viral load.
HI This is Kathi from hepcoutofbounds.org I was wondering how you are lately ? I keep looking for more posts ! My 6th TX the 23 months of daily Infergen wasn't too bad to handle , but then again I have had the worst TX's in the past. The one I did in 2000, was 20 million units a week of Alpha interferon crystals you mix and 6 Ribavirin a day for 48 weeks. That almost got the best of me. It took 5 years before I would go see any doctor again ! LOL So let's say I have been there and done that, Pegasys and co pegus was a breeze compared to that. Then Infergen mono sometimes combo. I hung in there until the doc stopped me. I have begged him to put me back on it but he says no. I have had problems with chf and enceph added to the mix now so he is afraid it will finish me off. Yah Yah and I'm also on oxygen now if I can sit still long enough. I am extremely busy on the site and the DEL site as well, so just try and get in my way lol Kidding, but I am very very busy that keeps me 1/2 sane. If anyone has a question for me here I will be checking it weekly ! Love to all that have hep c , You are in my thoughts. Kathi (Fadedjeenz)
Hi Garde, Well I started infergen Aug 31, I have taken the interferon and the peg but did not respond to neither. So this is my third try with the infergen and riba. I hope your doing alright with it. I have just had headaches and nosebleeds. The first night was really bad I had 104 fever, chills, aches and pains, I thought I was going to die. My teeth were chattering so bad I thought I was going to break a crown, lol It was not fun, but that is the only night I really had a bad night. I take my shot a nerve pill and an ambien and I'm good to go to sleep. Working everyday, Taking effexor for depression. So far its all good, can't wait till the Dr. checks to see if its working.
So hang in there,
Live, Love, Laugh
hondapatches
So hang in there,
Live, Love, Laugh
hondapatches
I wanted to update anyone that had read about Infergen. I am Kathi , I will be as brief as possible, with my experience. Snook is a very good friend of mine, so I am replying to his post. I have treated #6 times 4 awful alpha's 18 months Pegasys&copegus cleared in the 10th month. relapsed right away after it was over. Waited 2 months and went straight into 700 shots in 700 days of Infergen, I cleared the virus in 5 weeks mono. Doc added Riba gradually , had to stop it. Stayed clear for the duration on Maintence dose 7 1/2 daily. As soon as Infergen was stopped I relapsed again. I really feel that being clear for the 23 months bought some precious time for me. I would do it again if the doc would let me. If anyone would like to know more feel free to come to the site. hep c out of bounds .org I am the co Host with Lou and we are dedicated to helping anyone that needs us. Chat is open everynight 9:00 est hope to see you there ! sincerely yours; Kat
I had read also that the hep c particles have been found in cryo.....but the article never mentioned anything about not clearing the virus because of it.
But, that is the first thing that went through my mind, as a matter of fact there is a posting I made to Jim discussing my fear of not svr if you have cryo..due to the ability of the cryo to trap the hcv.If doctors haven't thought of this, I can only scratch my head and wonder why.
I want to discuss this with my doctor at next appointment, but since I haven't read or found any articles on the possiblities of looking like you svr, but your not really svr because of trapped particles.
Don't want her to think I'm nuts with thinking this, so please let me know if you find any articles.
My thinking is...if you still have cryo when your finished tx, whose to say there aren't trapped hcv particles that will be released into blood when your body temp goes above 98.7, but then again we're not doctors and maybe the raising and lowerering of body temp during tx would be able to catch them. all.
But, that is the first thing that went through my mind, as a matter of fact there is a posting I made to Jim discussing my fear of not svr if you have cryo..due to the ability of the cryo to trap the hcv.If doctors haven't thought of this, I can only scratch my head and wonder why.
I want to discuss this with my doctor at next appointment, but since I haven't read or found any articles on the possiblities of looking like you svr, but your not really svr because of trapped particles.
Don't want her to think I'm nuts with thinking this, so please let me know if you find any articles.
My thinking is...if you still have cryo when your finished tx, whose to say there aren't trapped hcv particles that will be released into blood when your body temp goes above 98.7, but then again we're not doctors and maybe the raising and lowerering of body temp during tx would be able to catch them. all.
Yes, I don't have the link handy but will look for it.
This is why you need a definite answer as to if and what kind you have. If positive and Type II or III, your tx protocol may need to be changed. There are many opinions about that but there are also many who are not knowledgable about cryo and how it interacts with HCV.
Can you talk your talk into the test? IF you are negative, you'll know to start looking elsewhere for answers to your symptoms.
miss
This is why you need a definite answer as to if and what kind you have. If positive and Type II or III, your tx protocol may need to be changed. There are many opinions about that but there are also many who are not knowledgable about cryo and how it interacts with HCV.
Can you talk your talk into the test? IF you are negative, you'll know to start looking elsewhere for answers to your symptoms.
miss
Boy - got a lot of responses.
I probably won't be able to answer all the questions, but her it goes.
I tested positive for the cryo. But I know I had it before the doctor ordered the test. I was experiencing great leg pain on a daily basis, my blood vessels were breaking, even when I woke up in the morning I had some new ones. What really brought this to a head was flying. I traveled several times last year, to Hungary. On the first trip, I got off the plane, and could not believe what had happened to my legs. My ankles where deep purple, my legs had deep purple spots on them. When I came back to the states, I went to urgent care. They never saw anything like this before. Did some tests to make sure I did not have a blood clot. I also had daily outbreak of hives.
I started doing some research on the internet, and everything brought me to back to cryo. Then I went to see a Hepatologist (aside from my gastro). I had everything written down. One look at my legs he know I had cryo. I was then tested, positibe for cryo (they know at the lab they had to do the test under controlled temp). My RH (rheumatoid factor was high) thus all the leg pain. So they put me back on treatments.
That was in January. I am on half treatments and guess what, I just travelled to Chicago, my blood vessels were breaking again. My leg pains are getting worse, and my rash is back. (never had a rash since I started treatment in January)
So not even the maintenance drug dose I am on is working. I need to get rid of this. My Hepo says there are a lot of serious problems that Cryo causes. It's not just about the liver any more. It's about other organs, and possibly losing a leg.
Fun, huh
I probably won't be able to answer all the questions, but her it goes.
I tested positive for the cryo. But I know I had it before the doctor ordered the test. I was experiencing great leg pain on a daily basis, my blood vessels were breaking, even when I woke up in the morning I had some new ones. What really brought this to a head was flying. I traveled several times last year, to Hungary. On the first trip, I got off the plane, and could not believe what had happened to my legs. My ankles where deep purple, my legs had deep purple spots on them. When I came back to the states, I went to urgent care. They never saw anything like this before. Did some tests to make sure I did not have a blood clot. I also had daily outbreak of hives.
I started doing some research on the internet, and everything brought me to back to cryo. Then I went to see a Hepatologist (aside from my gastro). I had everything written down. One look at my legs he know I had cryo. I was then tested, positibe for cryo (they know at the lab they had to do the test under controlled temp). My RH (rheumatoid factor was high) thus all the leg pain. So they put me back on treatments.
That was in January. I am on half treatments and guess what, I just travelled to Chicago, my blood vessels were breaking again. My leg pains are getting worse, and my rash is back. (never had a rash since I started treatment in January)
So not even the maintenance drug dose I am on is working. I need to get rid of this. My Hepo says there are a lot of serious problems that Cryo causes. It's not just about the liver any more. It's about other organs, and possibly losing a leg.
Fun, huh
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