Infergen

[garde]

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.

[giddyup]

Hello, I sent you a note on your old thread.I wanted to also mention that the Quests in my area I know didn't do the right procedure with my blood.I went to a university hospital and talked to the lab phlebotomist first. Perhaps you could check that whoever draws for the test knows the correct procedure for the cryo test.Even when it's done right it still doesn't pick up the cryo sometimes. Maybe you could contact a phlebotomist,I don't know. As far as infergen goes 15 micros daily was tough for me. 14 mo since I finished the Intermune Direct study and I'm stil not 100%, but I'm close. I think I would do the 9 micro course instead of the 15 if I had my choice.

[Snookmiester]

I am not familiar personally with Infergen, other than I have heard of stronger sx's.. There is however a lady in particular that could answer most of your questions, and address your concerns, etc..
Her name is Kathi, and she is on daily infergen right now. This is her 6th treatment, and she has been on infergen now for like over a year. She will be doing two years in total I believe.
You can find her over at www.hepcoutofbounds.org
Register for the site, and tell them Snook sent ya.. Kathi is the co host, and you can usually find her in chat. She is a remarkably strong woman, and an inspiration to anyone in doubt about the power of pure determination to eradicate the virus once and for all.

[SJL]

I recently finished 52 weeks of infergen/Riba & it was pure h-ll. Prior to that I did 48 weeks of Peg-Intron/Riba. I experienced every side effect that has been mentioned on this site & then some. Cryoglobulin is considered a tag-along disease as a result of the Hep C. The only way to rid your body of this is to eliminate the Hep C.My understanding on Cryo is that it is proteins that clump together cold. Usually you feel no symptoms other than lab results. It can for some cause disease affecting one or all organs.I responded on both rounds of treatment, then relapsed 4-6 weeks after finishing. I have also done 5  mths. of Pegasys maintainence which did not work. I think everyone's body reacts totally different to the toxic drugs. As for the numb leg, I have been left with Neuropathy of both feet & legs, also the discoloration on my lower legs which appears redder than the rest of my legs.All of this is a result of the toxic interferons. I also have developed a tumor marker, which I did not have throughout therapy. I am done with the drugs. I am 63, F, genotype 1B, grade 3, stage 4, with beginning cirrhosis. My Hep C Specialist is watching my enzymes monthly & hs also told me that I would probably not have any trouble for at least 10 yrs. This is the route I am taking. It is a personal decision that everyone has to make, but in my case, the meds have caused me damage that may or not be reversible. I take physical therapy 2x a week and I still have trouble with the numbness & balance. I wish you the best if you go on Infergen & who knows-it might work for you!
Sandy

[52TELE]

Hi Myown. Strange symptom isn't it?
I saw my doc today , she said she has never seen anything that resembled what I'm experiencing. I was really counting on being able to get some answers from them , but I'm back at square one.

I cant find anything that I feel is decisive in whats going on with my legs , left worse than right. It started with a scar from a knee replacement starting to turn very dark about 4 weeks after starting treatment , then the skin on the top and inside of my leg turning brown-ish in blotches. It went on that way for a couple of months , until recently I started getting a reddish rash in the same areas. Never itches , never hurts , but I'm afraid of progression. One of the closely similar things I have read about says that it may not itch , but can progress to cutaneous legions(?) and painful itching. It is starting to spread up my left leg but I could be imagining that .
Here is a link to a derm site I was looking at. The picture shown there is closest to what mine looks like , but not exactly.
http://www.aocd.org/skin/dermatologic_diseases/progressive_pigmen.html

[fishdoc]

I'm curious why they jumped to infergen without upping the riba first?  I failed the 2 log drop at 12 weeks, went straight to a specialist that put me on increased riba, and went undet at 24 weeks.. clinically I dont think I am responding as he felt I should, but that remains to be seen... but if the infergen causes addt problems.. bill54 is going to 2000 mg of riba on his retreat...

[hawkbill]

Hello, First time to post; but, I have been lurking for months. I was on a trial for intermune which was a daily shot plus an extra shot of actimune on M-W-F. I did not respond and after 6 months of daily shots I was called-off of the meds.  While on the actimune I developed an injection site infection and I also had and still do have numbness in right leg.  I have treated a total of 3 times..SP, Roche and Intermune.  Still a non-responder. The infergen was the most hardest of them all. Oh, sometime in the early 90's I did a trial for riba if you can believe it.  Damn they even gave us a bunch of money. But, now I know why I act as I do at times. Speaking for ME, I would never do the infergen again. Well the first post was not to hard and I hope to pass more info on if possible.  Hawkbill