What are options after relapsing from 48 weeks of peggysis and ribaviron treatment. I cleared after 9 months but have relapsed to a viral load higher than when I first started. I quit treatment 3 months ago and have gone from undetectable to over a million in that time. Can you recommend a hep c specialist in the Austin Tx. area? I am about to switch to infergen 3 times weekly along with daily ribaviron. Is this my best option? My doctor is difficult to reach and hard to get answers from. I am unclear how this treatment will compare to the last as far as side effects and ability to work. Any advice would be apprecialted.
Sorry to hear that the tx didn't work for you. Uusally when someone does relapse,,,the virus multiplys so fast that the VL can be quite high. Like you said,,,higher at times then when you started out. You were a responder to the tx so that is very good and sounds like you would be a good candidate for infergen. There is some people on it here and hopefully they will give you some information. Good Luck to you!
marshette - I am so sorry to hear about the relapse. My doctor says if it happens, daily infergen is the next step. He said it is better than 3x a week. I hope you can find someone in the Austin area. If not, maybe head to Houston (?) I can tell you not to come to Midland, because, I tell you, there is NO ONE here!! Heard a good Austin band last night -- Cross Canadian Ragweed--- we so seldom get any music here, it was great (altho I was a real grandma in the crowd)
honey -- good Sunday morniing. Glad to see you are up and running today. I am taking it easy
Just wanted to share my experience with Infergen/Riba three times weekly. I'm not convinced 3/week is good enough, never have been...but can't convince my doc otherwise. Until maybe now, I will try again. I am a type 1, non responder to PegIntron/Riba and started Infergen/Riba, 18mcg in December 05. Starting vl was 827,000, 4 week was 498,000 and just got my 12 week results...still at 252,000. Very discouraging to say the least. Three times a week with Infergen didn't even come close to the response I had with Peg...On Peg, I went from 1.9M to 44,000 in 12 weeks. I would strongly urge you to argue for daily Infergen...if you're going to put yourself through tx, might as well give it your best shot. I realize there are more sx on daily, however if you have a doc that monitors you closely...you can stay on top of them. My doc is out of town until the 20th, I will see him then and see what he has to offer now that my vl is still high...it's time for an aggressive change in my opionion, whether it be meds or the doc himself! :)
I did the Pegasys/riba combo for 26 weeks and it didn't help me. I reponded but virus mutated. I took a short break and did Infergen. I cleared October 7 and I'm still on maintenance but will be done on APRIL 7. I did 5cc of 15mcg Infergen Daily.
I lost some weight but handled it pretty well. Keep an extra blanket on the bed. Get some Yoplait yougurt smoothies with extra protein, oatmeal with fruit, etc. Whatever tastes good.
Being so totally obsessed about this disease and everything I have already decided IF I were not to clear or to relapse I would get in on the Infergen/Riba trial. While as Magnum has said the sides are harder and it's a daily shot - the results for those who do not clear are VERY good.
As this Consensus Interferon is having such great results for relapsers or people who can't clear - I have already spoken to my doctor JUST IN CASE and he is willing to send me to the city to another doctor to get me in on it.
If I was you I would do some research into this. As it's supposed to be a better chance BUT it's harder tx...there is a lot to decide about.
I live in the austin area and have seen a doc Adams he has had years of experience and ran the hepc clinic at brackenridge for years thier is also another one dr Brode my friend down the road used him and he is supposed to be one of the best here in austin and his practice is in the south part....
im worried about doing treatment in august how did you do with the horrid hot weather,i really dont think i will be able to stand it,since i already pretty much feel like heck on just 80 degree days.
I'm in the Austin area and use Dr Alam. Some people think he's not warm enough but he seems really informed about hep c (did a special residency in hepatology at UCSF--really good place.
All that said, I don't think we get the BEST med treatment in Austin. I went to a hepatologist in Houston at the Baylor Liver Center. They are GOOD. I'd use them but I just felt I couldn't handle the travel when I feel so lousy (but somedays wish I'd just gone with the travel). I would suggest a visit to them for their opinion. They are state of the art liver specialists there. I saw a Dr. Stribling but I suspect that all their docs are good.
Sorry about your troubles. I wish all the best to you in your future. Deb
what are your stat's? geno type? liver bx? you told your vl, that was about it. the tx your dr has lined up for you kinda sounds backwards to me. just my opinion, might be wrong. i started on interferon A 3x a week & riba daily. failed after 3 months. sides on that TO ME was worse than the next coarse of tx. of coarse everyone handels the sx different so you might do fine. then i did pegasys/riba. undetectable at 12, 24, and 48 weeks pcr. 2 or 3 months later i relapsed. shortly after, i started peg/copeg. 24 week pcr i was clear. i had a viral break thru at week 60. now i will just wait. my opinion is to first off look for another dr. like i said, when i first started down this god awful road interferon a & riba was the standard tx! that was quite a few yrs ago. i don't know, you kinda sound like you're in the same boat as i. my option, try and get into a trial. there are a few. CIFN-(consensus interferon), valopicitabine-(NM283). They start enrolling patients after the first quarter in 2006 for NM283. not sure about consensus. both these trials are for non-responders. i'm new to looking for the next step to take as well. I'm surely not new to tx! these trials sound very promising & i would (at this point) just wait for the new and improved HVC tx. I've been torchered enough, so have you so if you can wait, in my opinion, that's what i would do. And also find a dr you are comfortable with & don't have to pull teeth to get answers from him. can't help you with the texas area! i'm way up north in MI:) Take care & keep us posted:) I'm thinking of ya. All of you good peps on this board:) peace! BTW here is a web site - hepatitis-central.com
cuteus, i snaged the links you gave me and now i get bombarded w/pop-ups! It's crazy! i think it was the natap.org one. take care.
If you are doing exactly what the doctor is telling you to and staying away from alchohol completely then it sounds like you need a new doctor to me. Doctors are funny though if they give you instructions and you don't follow them then they will lose some of their interest. I know they are not suppose to but they are people too. I hope you are able to find someone who can help and communicate with you. Sorry you have traveled so far to be looking for the same answer. Bummer. I wish you all the best. Dale
I am also in the austin area and just posted a question about cirrhosis and ss disability. My husband has hep c and cirrhosis and has been through treatment twice--responded both times and relapsed twice. There is a foundation called Central Tx Liver Foundation that treated him last time--first time was with Dr Adams at Brack. I have heard good and bad things about Dr Alam.
Yea, I went thru 44 wk treatment program with Genotype 1, cleared the virus wk 12, and then relapsed. Took Interferon alpha 2-b and rebetol. Getting ready to go thru a 2nd round of treatment. Have tried herbs too. Dandelion tea, licorice tea, and other supplements as well. Any other suggestions are appreciated...
I'm in the same situation. I am waiting for availability of protease inhibitors, Telaprevir of Bocepravir. However, I am intrigued by NYgirl's comments on Infergen. My doc hasn't talked much about this, but I am planning to bring it up with him when I see him next week.
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