Had most of those symptoms but i am one of the lucky ones who came back clear after 6 mos. still have irratability, nightmares trouble sleeping, itchiness, fatigue, confusion, (should i go on) and its been 5 mos since last shot but they seem to come and go. feeling quite funky right now, cant get my mind off my mortality cant concentrate. good luck to all
garrett
The answer to your above questions after stopping tx for me is yes to alot of them. Its amazing what these drugs can do to us and it will take time for our bodies to heal from it. I started with the rash really bad last month of tx and the first 2 weeks post were awful as I itched so bad and could not get sleep or any relief. I guess still lots of water and not overdo even though the increased energy. Hope you are starting to feel better these days....
maybe the question should be - has anyone NOT gone through these side effects!!!!
Have a question to any of you who delivered a baby while being HBV infected.
9 months ago I had a baby. I found out that I am HBV infected being 8 months pregnant. My baby got an HBV vaccine and a shot of HBV immunoglobulin right when she was born. Then we followed up with 2 to other vaccination dosages at 1 month and 6 months. Now I took her to the doctor and she is testing positive having the exact same markers I had and ALT- 120.
Are those my markers in her blood or did she get infected? Is there a chance of her clearing this virus. I am very nervous right now. Does anybody know much about this?
my first post. sorry it will be such a downer. i was on interferon from 1992 to 1994. non-responsive. i was on the combo treatment from may of 1998 (just before FDA approval) thru january 1999. got all the usual side effects but they seemed much much worse, like turbo chgd, with the ribivirin. i was not detectable at 3 mos into the protocol so it was decided i stay on. continued to get sicker and sicker til it was stopped in jan of 99 after 9 mos. i remain to this day-6 years later-with continued fatique, cramping and heaviness in the muscles, overall aches and pains, chronic fatique (being treated for low thyroid since last couple of mos of combo), candida overgrowth in mouth (which i was told was an immune system response to drugs and which i had really really bad on treatment - probs swallowing from sores in mouth and throat). been to some of the best drs "we have a long experience with these drugs and we simply don't see these kinda long term side effects" is what i always hear. i still have no detectable hep c virus and all other tests come out just peachy keen! soooo-i guess i'm wondering if ANYONE has heard of still being this sick after all this time off the drugs.
thanks
Sorry I took a while to answer. As you can see, someone posted MMPD as the drug. That's the one they want me to try, but also look into another trial concearning the drug HCV-796, by ViroPharma Incorporated. Below, is a transcript release to the media....
ViroPharma Incorporated (NasdaqNM:VPHM - News) today announced that dosing has begun in the Phase 1 clinical trial for HCV-796, a novel polymerase inhibitor being developed as a potential new product to treat hepatitis C. ViroPharma is conducting this Phase 1 clinical trial with its partner in the development of antiviral compounds targeting hepatitis C (HCV), Wyeth Pharmaceuticals, a division of Wyeth (NYSE:WYE - News). Preclinical studies have shown that HCV-796 may be more potent than other anti-HCV compounds developed to date between the two companies.
HCV-796 represents an exciting opportunity for us, as this non-nucleoside, based on preclinical tests, is the most potent of all of the molecules targeting HCV that we have brought into clinical trials,'' commented Dr. Colin Broom, ViroPharma's chief scientific officer. ``For the first time in the history of this collaboration, we with our partners at Wyeth Pharmaceuticals have two promising anti-hepatitis C compounds in humans. With the first compound, HCV-086, we remain on track to have proof of concept antiviral data available from the ongoing Phase 1b trial later this quarter. We hope to initiate a similarly designed Phase 1b proof of concept studies with HCV-796 in HCV-positive adults during the second quarter of 2005, with data available from that trial in the fourth quarter of 2005.''
The current Phase 1a study is an ascending single dose, placebo-controlled trial designed to assess the safety and tolerability of HCV-796 in healthy adult volunteers, as well as to gather pharmacokinetic data. The study is being conducted at a leading clinical research facility in the United States. Should those data support further advancement of the product, the companies plan to initiate a Phase 1b multiple dose study in patients with chronic HCV infection to assess the antiviral activity, safety, tolerability and pharmacokinetic profile of HCV-796 during the second quarter of 2005.
Thanks for the info. I've never heard of MMPD. Hopefully there will be some new drugs coming out soon. 50/50 is not not that great for SVR. I'm only on week 3 of 48 and hoping to have few sides.
Thanks again, Sue
Hi Sue and Magnum,
Most likely the trial that magnum is talking about is one sponsored by Vertex Pharmaceuticals. It includes Pegasys, Ribavirin, and Merimepodib (MMPD) in triple tx and is being conducted at many centers throughout the US including Mayo in Phoenix. My understanding is that they have had some success with MMPD.
Best,
Steve
Hi,
Just wanted to add my two cents about sides. I'm on week 63 of 72 and have had all of the sx you mentioned and then some. Most seem to have gotten better in the last couple of months. The itching was intolerable and is finally gone, as long as I use the prescription cream and lots of moisturizer. Rashes are gone. The mouth sores lasted a couple of months way back at the beginning and have not returned. I lost a lot of hair, but it's come back...like you, it used to be curly; it's now completely straight, and I like it better. I'm handling the rages and impatience better now. I still feel run down a lot of the time and have muscle achiness and I run a low grade fever now and then for a week or two at a time. But it all seems much more manageable than it was, maybe it's because of my pronounced brain fog--maybe I feel bad and then forget!!!
I'm looking forward to getting past week 72 and I'm hoping to be better than I ever was before starting tx. I've had this virus for my entire adult life (since I was 20, and I'm 57 now).
I wish you success on this fourth round. You've shown a lot of strength and courage, and you have my admiration and best wishes for SVR.
Judi
Hi Magnum;
Could you please post more information on the trials that you are referring to? Is this third drug Albuferon? I always like to research new trials. Are you in the San Francisco bay area? I live in Silicon Valley ( San Jose ) just curious? Sue
I stopped treatment over two years ago. My curls have never come back completely. I would say 50%. I still have splotchy skin, especially my arms. The darkness under my eyes has never gone away, and I never had that before treatment. Now I wonder how my 4th treatment will go. This one includes Pegasys, Ribavirin and a new drug which I can't remember the name, but it is four letters.
This clinical trial takes place in San Francisco and Phoenix Mayo Clinic, as far as I know. More centers probably offers it. I will post what it is when I can remember or find the name again. Although I believe you will never go back to normalcy after treament, the changes are not dramatic, mostly cosmetic. As for all the other weirdnesses like temper tantrums, loss of hair and loss of hunger, they seem to be back to normal. I will post my disposition as I enter and go through my 4th and hopefully my final treatment. Good luck to everyone...
Magnum
are all these symptoms post tx? if so, how long post tx?
I'm a little confused about which of these symptoms you still have and are concerned about. The interferon & riba can cause all/the majority of these symptoms, so you need to narrow your focus on what you would like to have addressed.
Again, I'm new to this, but FWIW, I've had about 60% of what you're describing. No tolerance for when things don't go my way (but I've always been that way!) .. seriously .. TX worsens it. Hair thinning .. I feel the cold air on my scalp a lot more now. Aches galore -- especially my wrists and forearms. Lower back too. Damn carpal tunnel is worse. I'm on week 7 and the novelty of being able to do the shot, go through my day and basically "make it" is wearing thin. When it's over, I hope these problems subside.
My nurse told me about a guy she had on TX who came into the office
because his wife said his mood changed for the worse. He immediately snapped at the nurse saying "I have no problems"! Now, this nurse came directly from heaven -- she's wonderful. His wife was shaking her head in the chair. He then got more furious. They pulled him from the TX. I'm sure they tried medication first, but his rage was not getting better. It was an obvious change in personality.
Anyway, my two cents.
Best of luck to you,
Peng.