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.

[fishdoc]

ccooolll, I love turtles... is that a turtle?? MY BRAIN is gone....welcome aboard... I won't remember you tomorrow so just holler "hey studip (saw that typo the other day and loved it!!) I'm the one that isn't named for a turtle... sorry about nonresponse.. I suspect your excited about vertex?

[PasoPerson]

I never knew about upping the Riba back when I had to go off treatment.  But now that you say that ... THANKS!!  I am going to ask about upping my RAGE first.  :)

It will be a lot safer and allow me to keep on driving.   (If there's even a remote chance of a breakthrough with seizure meds, I don't drive of course.)

[Myown]

welcome...sorry to hear non response. Sounds like your a fighter, so I'm sure your day will come.
Keep posting, you have much to offer.

see ya

[Lonestar823]

I had very good results with Infergen.  I did the Peg  but still had a viral load of 300 at six months and so he took me off all meds.  Six months later he suggested I try the Infergen.  I am also 1A.  I started with a vl of 3 million but it jumped sky high after stopping the Peg.  I cleared the virus after 18 weeks on the Infergen. Think I would have cleared sooner but I was only on 800 Riba.  Week 12 he upped me to 1000 and that did the trick.  I did 73 weeks of daily shots with twice a week Procrit at six months. It was a battle, a real battle with every side under the sun but not any different than the Peg for me, only, longer.  So long I don't know how I did it looking back.  I finished 9 weeks ago and within two weeks I was mostly myself again.  A few lingering sides but not bad.  If I can help you in any way, just whistle. ; ]

[52TELE]

"But, now I know why I act as I do at times"

I love it. Some people never figure it out , some people blame everything they can on treatment. It's too bad you had to go through so much on your journey.  Your welcome here , we fight like brothers and sisters sometimes, but your more than welcome to join us.

Here are my stats

49 yr old male in Dallas area.
dx fall of 2004 after life insurance exam.
Infected 1975
HCV genotype 1a
Initial VL 2.2 million
bx spring 2005  grade 2 stage 3.
Started .5 ml pegintron and 1400 mg ribavirin March 2005
Hemolytic anemia early on. Started 40,000 units Procrit late April 2005
HGB maintaining 11.5-13.5 .
2 log drop at 12 wks but not UND
UND at 16 wks . Extend treatment 4 wks.
Just completed shot 25/52.

My Dr. is Monty Trioutman at University of North Texas Health Science Center.

[Myown]

Sorry don't know anything about infergen, but I'm sure someone will offer advice/opinion when they see your post.

trying to learn as much as possible about cryo,I might have it.

Did your doctor think the cryo was reason you didn't clear?

Also, if you don't mind, can you tell me what you mean when you say the cryo is comming back? You have physical symptoms (what are they)? or you know cryo is back because seen in blood labs?

thanks

[52TELE]

Me too me too!! Please tell us your experience with Cryo .

[Myown]

I have been trying to read as much as I can at different sites, but it still doesn't come completely together. Guess your experiencing the same.

Did you have a ANTINUCLEAR AB test in any of your tests? I think(?) this is why she thinks I have it. I'm concerned about this being a problem with svr. Some articles say get rid of hep and cryo clears with it and other articles say you have to stay on low dose therapy or something. scary stuff.

missmiss has finished tx,and is going to have a cryo test to see what type cryo she has. So i guess that means it didn't go away with tx.?

Meantime, I have a doc appointment beginning of Oct., so I'll ask Doc about it, even if I hopefully don't have it and I'll let you know what she says.

[PasoPerson]

I am a Hep C, genotype 1a.  24 weeks of treatment on Interferon + Ribavirin only got my VL down to 66,000.

Doctor put me on Infergen + Ribavirin.  In 4 weeks' time my VL went to 2400.  It worked great.  

However, I have had a seizure disorder since 1972 and the Infergen allowed my seizures to break through their medicine.  Grrr.  Have been depressed ever since.  They told me to take a 6 month break.  Time to go to doctor in a couple weeks now, and I am going to try again on Infergen at first to get VL down, then Interferon to complete the job ... I hope I hope I hope.  My neurologist will up my meds while on this regimen, should hold seizures at bay.

So the end result is if you are taking medication for anything that requires you maintain that med, check first with your GP.  If not, I would highly recommend Infergen.  It did the trick for me.

[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

[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.

[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

[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

[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.

[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...

[MissMiss]

myown-I just had a thought.  Since this test takes awhile to do, is there a chance you can call your doc and have him/her order it ahead of time?  If this is a first appt he probably won't go for it but otherwise he might.  Find out which lab your ins will pay, go online and print the page out at Quest or PAML so the directions are specific.  Ask the lab if they have done this before and if they have a warming centrifuge.  Make sure they use a warmed tube and transfer it right to a warming pillow while it clots.

tele- Can you do the same, since you just saw the doc?  My doc didn't know which test to order so I handed him the sheet printed from Quest and he ordered it.  The previous test I had only checked for cryoglobulins, not which kind.  

This not knowing is not for the faint of heart, lol!

Also get an RA or RF done at the same time.  I don't think the antinuclear test will mean anything about cryo but may have other good info for you.

Best to you both.

miss

[Myown]

thanks guys..scary stuff for sure.

They did a test on me already, but when I asked the guy is this test had to be done differently then different tests, he said,"nah, the same."

Then I told him what I read and then he left the room a minust and came back and had a jar type thing. He said,"this is what they mean by thermally stable."

I know he didn't do it right, no special tube and I asked him if it was going to be analyzed immediately and he said,"no," it goes to the lab in the afternoon.

Crazy stuff!! Our lives are in the hands of people who sometimes don't knwo which end is up.

Maybe I should call my doc and tell her I don't think it was done correctly.

Thanks for your help.

[MissMiss]

good morning,

Cryoglobulinemia, as I understand it, are abnormal proteins in the blood that congeal at lower temps.  I think they then collect in the furthest point from the body trunk, feet and hands.  Other triggers than cold can cause flareups too.  The blisters, purpura, are from some kind of vascilitis, often caused by cryo.

The first thing is to find out if you have it.  You can google it and check every response to find out more.  There is yet a lot to learn about cryo, more research is needed and I am just beginning the journey to learn.

I think the sooner you know, the better your chance of SVR, if treated in accordance.  Once SVR, cryo often becomes negative.  In the meantime, knowledge is your power.

miss

[52TELE]

Hi , and good morning to you...
I read recently that when the researchers initially associated HCV and  Cryo , they found the HCV virus embedded in the congeald blood product. I think the point was that in the cryo effected area that the virus could possibly remain hidden and not be cleared by the normal( funny , nothing about this is normal) treatment protocol. Have you seen any of that information.

[MissMiss]

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

[SJL]

AS for temperature question-I live in FL., where it is hot all the time. The Cryo affects me in the morning when I first get up & in the evening. Normally I perspire heavily and am never cold. This has to be the cryo.
Sandy

[garde]

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

[52TELE]

Thanks for the great info! Let me see if you can answer another one..

cryoglobulins , Do I understand correctly that the blood thickens and becomes almost congealed in the effected areas when exposed to lower temperatures? I cant imagine myself being exposed to any temperatures that would qualify? Does that make any sense to you?

[Myown]

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.

[fadedjeenz]

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

[hondapatches]

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

[fadedjeenz]

  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)

[Myown]

I just read my posts in this thread written 4 months before I started tx. Very prophetic. Its too bad too cause this so called doctors still haven't sent me to someone that knows how to perform a cryo test. But here I sit waiting for my results of my poorly performed cryo test as the pains are now shooting up my leg. Maybe the more symptoms I get, they will THEN try to find someone to do the test correctly for me..

[Marl37]

I just finished 6 mts tx on infergen after doing 14 wks on interfon.  Daily shot started at 15mg which they had to drop to 12mg and 600 mg Riba which they had to drop from 800mg and weekly procrit shot.  Neither treatment worked and treatment was stopped last week.  My side effects were not good.  I mentioned the new tx's currently in trials and he said they're not ready yet and they don't know when they would be.  Without saying it, I got the impression he was saying if my side effects were this bad, it would probably be even worse with more meds thrown into the mix.  He did mention the way to go may end up being a liver transplant.  I'm going to make an appt with a hep dr who comes highly recommended.

[fadedjeenz]

  That sounds pretty tough, did you respond at all during the 6 months?  Are you 1A ? I have cirrhosis and it is still compensated, my Dr. C is one of the leading hepatologists in the country, and he said no more Interferon for me either. Bummer, I wanted Infergen again. The protease thing involves riba and interferon added to the mix , I know I don't handle riba well. So it is up to the newer things that are going on right now. Scientist's will come up with the answer, I just hope it is soon enough for all of us.  Never Give Up !  Love  Kathi

[Xquizit]

Kathi and Lou are loosers babe. Read it and weep but oh so true.

[fadedjeenz]

I had to come back to let you know , I did not relapse after Infergen. The test wasn't reliable.  I am now today Hepatitis c free since March of 2006.

As I stated in my previous post , this was my 6th  TX  
I cleared the virus within 5 weeks of starting it, finished out the 23 months total and I now have had 3 pcr's come back negative !!!!!
Anyone that wishes to contact me for information, please come to my home at  http://hepcoutofbounds.org

I'll leave a light on for you !

With all our love and friendship sincerely; Kat & Lou  
"OOB ROCKS"
Tell them Snookman my dearest friend !

I am also available every Friday & Saturday Night in Delphi Live Chatroom 10:00p.m. est. until the wee hours for all to have fun and laughs while discussing anything to do with hep c.
You'll be glad you came in !   Thanks; Kat
http://forums.delphiforums.com/hepcotb/start

[fadedjeenz]

You are welcome to visit my blog site and see who I am along with Lou, We have dedicated our lives to helping anyone that truly need us. Enjoy your yourselves, and know you are cared for.  Kat (Fadedjeenz)