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treatment for acute Hep C

Hello,

I have been lurking for a long time, using my blackberry, while sitting in my comfy chair with a heating pad, feeling terrible, and absolutely loving this forum.  I am completely addicted and read all of your posts every day!

I am a geno 1b, infected in October 2005, waited until May 2006 to see if could clear infection.  Started tx with 600 riba, 80 pegintron, then up to 800 riba and 100 peg after 4 weeks.  Initial vl 1350. Hgb dropped from 15.3 to 12.4, major sx of lack of oxygen, dropped riba to 600 for 4 weeks, then back up to 800.  12 week vl undetectable at 50 iu/ml.  I am at week 19/24? or 48?

My question - anything I can dig up on treatment of acute hep c is minimal.  Some studies looked at 12 week, interferon only, others included riba, but many suggested the riba is unnecessary.  For duration, the only thing I could find was a recommendation from the AASLD 2004 stating that 24 weeks was the minimum duration.

Anyone know any other recommendations?  I am so ready to stop at 24 weeks.  My life is on complete hold - not working, not able to be a mother to my 6 year old, not able do much of anything.  Your help is very much appreciated.
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131817 tn?1209529311
Welcome to the forum! You are in the right place. It is best to post up above in the newer threads where your post won't get lost. We get so many threads and posts that we sometimes don't look past the same day.
When you get your genotype, viral load and/or biopsy reports let us know what they are and we may help you understand what and give you our experiences. We are here to support each other. YOu can start a new thread with your results by posting a question. Hope to see you soon!

Linda
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Avatar universal
I have just been diagnosed with Hepatitis c. My primary care doctor knew a year ago that I was at the very least exposed to it and failed to tell me until just a few weeks ago. Meantime I'm drinking like there is no tomorrow.I just saw a G.I. doctor who ordered blood work and a sonogram (for tomorrow).They called today and said I had elevated iron levels and my liver enzymes were elevated as well and wants more blood.
I'm kind of scared about all of this as I don't even know enough to ask questions. My brother passed away from hep c and liver disease and I have a brother-in-law who is going through it.
I ran across this forum and thought I'd just ask for some help or at least support. Thanks for taking the time to read my post. Maybe this is what I need right now.
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Avatar universal
Love to connect outside the forum. I just sent a note to Aiuta. Look forward to chatting!!
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Avatar universal
I have had no acute HCV friends to talk with.  I wish I had known the two of you earlier.  It has been horrible going it alone.  This forum would have made the past year tolerable. Acute people are rare in this forum!

I became faint, dizzy and out of breathe "to the max".  I fainted one time and came so close a second that I went to the emergency room.  The first time I woke up with a defibrillator at my side!  Clearly I needed Procrit!  My doctor suggested it, but did not want to spend the money!  He was my primary care at that time.  A week later I went to another doctor who did not hesitate to give me Procrit IMMEDIATELY!  When I fainted on a ship at the time, blood tests showed that I was slightly low on a few minerals so they gave me mineral water.  Ship doctors did not understand Interferon or Ribavirin, obviously.  When I took Procrit it took about a week for me to "be able to move" again without dizziness and the "whirleys".  Then it took two more weeks to have 70 percent of these symptoms go away.  

I believe naturopaths are excellent.  They give information to patients unlike most MDs.  I would DEFINITELY NOT see just one medical specialist.  It was my second, of three, MD's that told it like it is: "Acute or chronic, to be sure, you must go 48 weeks of combination therapy with the maximum Ribavirin you can take without having red blood cells get too low."  Near the end of the 48 weeks I felt very good -- not like normal of course -- but so good I wanted to go for a longer term!  So I got a third opinion from a liver doctor from a high-end liver hospital.  He also said I was given good advice.  He felt that given my early response (EVR) to interferon, 48 weeks were sufficient.  That implies that if you do not have an EVR, if you feel as good as I did, you should go longer if you can find a doctor for the tx!

I feel strongly that your lifestyle (diet, rest, water, cleansing, and attitude) may dictate your success.  But this is a vicious disease, vigilance, being on the attack, is the mantra for "this" game. I feel this is true ESPECIALLY when you stop your tx.  BUT, IF YOU RELAPSE AFTER 24 WEEKS YOU BECOME CHRONIC!  YOU WILL WISH LIKE HELL YOU DID NOT STOP.  Now, being "chronic", there is a MUCH LARGER probability you will have this for the rest of your life.  Being acute is your only advantage, your only window of opportunity!!!  Your liver is still is in pretty good shape.  It still has sufficient tissue to recover.  Chronic liver situation is a HUGE HANDICAP in my humble belief system.  

I have a bit of an advantage. I had Lyme disease so bad once that I could not walk.  After one doctor brought my walking back with antibiotics, feeling good again, for a period of 10 (ten) years, he died, BUT I STILL HAD TO TAKE ANTIBIOTICS DAILY!!!  I was left on my own to find more antibiotics and another doctor.  I figured out how to cure myself without a doctor!  I ultimately stopped the antibiotics through a process of cleansing and have no lyme symptoms to this day.  I traveled with my doctor to lyme conferences, met Willie Bergdorfer who discovered the spirochete and Allen Steare of Yale, my alma mater, who discovered the disease in Lyme, Connecticut!  I LEARNED HOW TO "THINK BEYOND THE DOCTORS"!!!!  Doctors are truly caring, but money and time sucks them into glossing over "true care" for the patient.

Wish we could talk on the phone.  There is so much to say.
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Avatar universal
Willpower, I'd love to find some way to connect outside of this Forum.  We have A LOT in common and I bet we can exchange some good information and even have a good talk too.  Please feel free to email me at: ***@****.  I would love to connect.  Aiuta
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Avatar universal
Thank you so much for your post.  The doctors caught my illness in the acute phase this past April, so I related.  I was infected in mid-March and by mid-April, like you, also had dark urine, plus major fatigue, itchy skin, etc.  

The dr's waited the requisite 3 months in case I would clear spontaneiously, and I almost did (my mid-July pre-treatment VL was 140, down from 3,140,000 in mid-April).  The doc didn't want to wait much longer than 16 weeks because, at that point, it becomes more likely that I'll become chronic than that I'll clear, and as the illness begins to chronicize with our 1B genotype, treatment time goes up and chance of SVR go down.  

It IS possible that you had a VL in the 1000's, just like I had a VL of 140 pre-treatment, but several dr's told me that THOSE LAST HEPATIC BOOGERS CAN BE VERY DIFFICULT TO ERADICATE, SO IT'S POSSIBLE I WOULD HAVE BECOME CHRONIC WITH A LOW VL.  I will be treating for (AT LEAST) 24 weeks, says my dr.  Sometimes it does seem kind of random, though. I mean I'm sure it's not like that on the first day of the 24th week the Hep C particles suddenly decide, "ok, now we are officially chronic". Dr's came up with those numbers, just like doctors came up with the 24/48 treatment schedules.  Is it possible I would have cleared the virus spontaneously on my own even after week 16?  Yes.  Was it worth the risk to wait?  According to my Dr., no.  The system they created of 3-6 months wait to see if it becomes chronic is based ON RESEARCH & EXPERIENCE, and it's not ENTIRELY arbitrary.    

I think you got some VERY GOOD feedback on the previous posts in this thread.  I would emphasize that it is VERY important to know you are acute before deciding to treat as an acute.  To do this look at past LFT's and current numbers and symptoms, as well as be able to come up with a possible date that you got it recently.  It took several doctors A COUPLE OF VISITS and looking at my numbers (including years of past LFT's) to BELIEVE me when I told my story and that I was an acute case.  They kept asking if I was sure I didn't have it before.  In the end it was my numbers (past and present) that convinced them, but at the time, I felt offended that they didn't believe me at face value.  Now I see why; it's in my best interest to be SURE I am acute before treating as one, especially with the difficult genotype I have.  Even though the treatment can bring uncomfortable symptoms, it may be better to overshoot than undershoot.  

This is all just my experience and opinion though.  I am NOT a dr. but I have done my best to inform myself on acute Hep C (and it's not always easy, because, as you mentioned, the info available on the topic is not plentiful).  Only 25% of acute cases even have symptoms; of those some will just think they have the flu.  It's hard to catch and therefore not frequently studied.  I did go to a seminar on Hep C this week and the dr's said that they ARE doing SOME (not a lot) research on acute Hep C and spontaneous resolution, because if they can understand the spontaneous resolution process, they could learn to mimic it and use it for treatment.  More research is being done on new drugs like Vertex, etc, right now though, because of the need to help all those who already are infected with chronic Hep C.  I guess in the realm of Hep C, the acute factor is a "luxury" issue and frankly, this makes sense to me.  It is more important to help the millions who are already infected eradicate the illness than figure out how the few who come in with acute Hep C get rid of it.  

I wish you ALL the best and if you have any further questions I hope you will not hesitate to ask us.  All my best, Aiuta
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Avatar universal
Thank you for your passion.   Your comments have made me think twice about stopping at 24 weeks. I am not yet eligible for procrit since hgb still at 12. But I am going to investigate if my naturopath can offer any other options. The low energy and breathlessness is the worst sx I am facing right now. I think it is hitting me harder because my lungs aren't in great shape and my normal oxygen saturation at rest is about 92%.  Anyway, I've taken my fri shot and now just waiting to feel sleepy enough to go to bed. Be well everyone. &mode=PostComment&forum=hepatitis&message=42878&name=Paleface&email=***@****
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Avatar universal
Thank you for your passion.   Your comments have made me think twice about stopping at 24 weeks. I am not yet eligible for procrit since hgb still at 12. But I am going to investigate if my naturopath can offer any other options. The low energy and breathlessness is the worst sx I am facing right now. I think it is hitting me harder because my lungs aren't in great shape and my normal oxygen saturation at rest is about 92%.  Anyway, I've taken my fri shot and now just waiting to feel sleepy enough to go to bed. Be well everyone. &mode=PostComment&forum=hepatitis&message=42878&name=Paleface&email=***@****
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96938 tn?1189799858
The hepatologist that Veggie referred to was Dr. Jenny Heathcote.  She is associated with a Univ / Med center in Toronto.  If you google her name she is easy to find.  She is a published author and is involved in a bunch of hep c researh in Canada.
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Avatar universal
wow i love the speed of the responses.  I am not a straight forward case.  I am older 50 years.  Have an another disease (gaucher disease) which has resulted in a massive enlargement of my liver.  It takes up a large portion of my abdomen and you can feel the edge below my belly button.  I am also heterogeneous for hemochromatosis...so my ferritin levels have always been over 1500.    I went into hospital last October for a hip revision (replacement of a replacement).  Ten weeks later got diagnosed after routine bloodwork found ALT 1200 plus.  I was peeing dark urine, had pain in abdomen and felt flu like symptoms.  Saw a hepatologist right away, but given the circumstances the diagnosis of an acute hep c wasn't an absolute.  I already have scarring in my liver from my other disease.  I knew I got it from the hospital, but crazy as it might seem, their doctors seemed reluctant to admit this.  so I had a lot of blood taken, multiple vl showed a very low number that was dropping.  I was anxious to start treatment, but doc worried about my already compromized body (I don't have a spleen) and potential sx.  So played the waiting game until May.  I refused the biopsy because I didn't think it made a difference to the treatment decision.  I was acute, I needed to treat as soon as possible. But now I see, it would have helped my decision to go the 48 or 24 week period.

anyway - if any of you come across any studies, please forward them my way.  
Jim - I live in Canada and provincial protocols rule - they don't do the 4 week tests, they don't use the TMA.  I am trying to find out how I can get a TMA done on my blood.  Anywone know where I can write to find out?

thank you everyone for your support.  I am so grateful to have this community out there in cyberspace.
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Avatar universal
What do you mean rescue meds?
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Avatar universal
where in Canada are you?  I am also in Canada, BC.
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Avatar universal
Your case sounds quite complex and certainly beyond the kmowledge of anyone of us here, and perhaps even most doctors. That said, it seemed that while you may have been diagnosed in the acute stage, you started treatment in the chronic stage. But chronic or not, your extremely low pre-tx viral load numbers suggest that your bodies immune system was mounting a strong attack on the virus, which hopefully will work to your advantage.

As far as 24 or 48 weeks, if your case was somewhat normal and you said you had little or no liver damage, I'd say stopping at 24 weeks was a reasonable option given your side effects. But that doesn't seem to be the case, so I guess you will have to follow your heart and any advice you can garner from your doctors. Is it possible to get a second opinion within the Canadian system? One of our former members -- VeggiDip aka Vegas777 -- I believe was seeing a top Canadian doctor. Maybe someone knows
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Avatar universal
...Veggie's whereabouts these days. She might also have some info on TMA testing. I think one of our current members, RockerForLife is also in the Canadian system and may be of some help. Another alterative, if finances and logistics comply is to have the test and perhaps a consultation in the U.S.

All the best in whatever you decide.

-- Jim            
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Avatar universal
What challenges you have, you are very strong. I admire yor tenacity and spirit. One thing though...50 is NOT OLDER!!
50 is the new 30 remember? ;)
As mentioned before, we are just patients and your case clearly is beyond us. Are you looking for studies of geno 1 treating for shorter times? Or studies on Hep C and extra hepatic manifestations? Studies on acute hep tx duration? I think you are a chronic case as time passed prior to you starting treatment but I am not a doctor so I could be wrong on that. I know I was told I was "acute" at one point but by the time I started tx I was "chronic" as 6 months had passed. I will look for studies for you but I am not sure what studies you need.
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Avatar universal
Thanks. Do you know how Veggie is doing these days? Didn't she start a website or something?
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You are right about 50 not being old, although this hep c treatment has aged me 10 years I am sure!  I am in Ontario, and drive into Toronto for my hep appointments. I guess I am officially a chronic case, which pisses me off because I had to wait so long dor the doc to mae the treatment decision. &mode=PostComment&forum=hepatitis&message=42878&name=Paleface&email=***@****
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Avatar universal
You are right about 50 not being old, although this hep c treatment has aged me 10 years I am sure!  I am in Ontario, and drive into Toronto for my hep appointments. I guess I am officially a chronic case, which pisses me off because I had to wait so long dor the doc to mae the treatment decision. &mode=PostComment&forum=hepatitis&message=42878&name=Paleface&email=***@****
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Avatar universal
Hi, I'm treating in Sask. which is easier on the pocket but lower for medical resources.( I'm actually done, just waiting for results of 3 mo. PCR) Keep yourself up on info and it helps alot!! Your case sounds quite involved, all the best to you.
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Avatar universal
These are my beliefs, experiences, research findings, not from a reliable hepatologist; but DO NOT DO ANYTHING BUT COMBINATION TREATMENT FOR A MINIMUM OF 48 WEEKS!!!!

The doctor that infected six others and me, stopped my treatment at 12 weeks with the promise I would SVR 100% clearly.  THIS DISEASE WILL EFFECT YOU THE REST OF YOUR LIFE if you fail to achieve SVR!!!!  Do not consider the easy way out now!

Why do I say this:
(1) If you relapse, you become a "chronic" hepatitis C patient, which is A LOT WORSE than the huge potential long term, lasting side effects of interferon/ribavirin.  Chronic HCV is vastly more difficult to clear!
(2) If you relapse, "quasi-species" of the virus are believed by almost all researchers to develop, again making future SVR much less likely.  
(3) All studies which suggest 12 week treatment for acute HCV are based on VERY SMALL, UNRELIABLE SAMPLES.  Most of them are from Saana Kamal, a Harvard acute HCV researcher.  
(4) My experience is that after 4-5 months the original symptoms drop to a tolerable level.  Anger, negativism, mallaise, GERD, rash, itchiness, seem to get worse with extended tx; but the horrible things like nausea, headache, fear, weakness drop 50% in 24-30 weeks.  Your body seems to adjust to the tx toxicity.  
(5) I have been to three doctors: The first that infected me, the second that said I MUST GO A YEAR on combination therapy with as much Ribavirin as I can take and a third that is part of a very high end clinic reiterated the same thing.  I went to him in the end because I would have gone more than 48 weeks, ANYDAY, if it increased my SVR probability by just one percent!!!!
(6) There are serious ways to mitigate your during-tx and post-tx side effects.  Water, macrobiotic (NOT vegan) diet, lots of sleep (9 hours minimum), mind control (for stress), enema's for cleaning toxins and an awesome friend that lives with you to help your optimism level.  

I am so very glad I toughed it out.  Remember, the drugs are not as problematic as the disease!  Again, from my research, HCV is very likely much worse than their possible long term side effects.  

The very best to you my friend.
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Avatar universal
if you do wait for vx950 you may have to take peg/intron with it not the riba. the time should only be weeks on tx not a year. also the chances of svr should go waaaay up from 45% now.they also have a drug in final trials that does not cause anemia. the way you are treating now with the lower riba and shorter time is lowering you chances.if you had this for one year you can if you decide to wait. i had it 37 years before starting tx. you are in the best of all positions. smile.
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96938 tn?1189799858
She had a forum a while back and I 'chatted' a time or two, but that was several months back.  She and hubby were to move closer to Toronto, from the back woods, which would have given her closer access to tx.  But that's where I lost track.
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96938 tn?1189799858
The reason you can't find a lot about acute c is because it's difficult to recognize unless the point of infection is known, or at least reasonably suspected. And, the definition of chronic, as I understand is detectable virus in the blood for 6 months. Did you have a pcr before week 12? Like at 4? . The build-up of the peg and the riba is interesting, almost sounds like Dr. Cecil at work.  One option you have is stop at 24 and have a pcr a month later.  Since, you are young, no liver damage, have a comforable chair, low starting vl and a crackberry, you could see if you beat it already.  Then, you could have the option to do tx or wait when new meds become available in a few years. It could be worth the gamble since you are fighting anemia and have a young family to deal with.
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Avatar universal
Last sentence in paragraph four should read:

"Since you apparently were only tested at week *12*, it would be gambling to stop now."
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