Aa
Need advice on treatment plan
Yesterday all my results came in and I am finally going to be able to set a plan in motion. Having learned so much from this site already, I wouldn't dream of making a decision without first running it by y'all first!! Ok, here goes:
I am a geno 1a, vl 2,000,000. My ultrasound came back totally normal. My AST is 52 and my ALT is 67. My dr-she's a hepatologist-said even with early liver damage, the spleen would show enlargement and mine showed none. Therefore she is leaving it for me to decide when to biopsy.
The couse of treatment she recommends is Peg-Intron and weight based RIBA. 48 weeks. Labs done just prior to beginning tx and then monthly altho she checks CBC more often. Agrees with AD as well as the usual "emergency" drugs for migraine, nausea, ect.
She also said there is a study coming up real soon for naive HCV patients by Vertex using telaprivir as a third drug. I am currently on the list for that. I have insurance, but little/no drug coverage, so it would be nice to not have to pay for the treatment. She also said that study or not, I should begin treatment some time before the end of the year.
I feel confident with her, mostly because of what I have learned from this site, but because I live so close to the Mayo Clinic, am I wondering if I should get a 2nd opinion from them because they-well, just because they are the Mayo!!??
The information y'all provide is invaluable-Thank you for keeping me-and I am sure many others-sane thru all this!!!
I am a geno 1a, vl 2,000,000. My ultrasound came back totally normal. My AST is 52 and my ALT is 67. My dr-she's a hepatologist-said even with early liver damage, the spleen would show enlargement and mine showed none. Therefore she is leaving it for me to decide when to biopsy.
The couse of treatment she recommends is Peg-Intron and weight based RIBA. 48 weeks. Labs done just prior to beginning tx and then monthly altho she checks CBC more often. Agrees with AD as well as the usual "emergency" drugs for migraine, nausea, ect.
She also said there is a study coming up real soon for naive HCV patients by Vertex using telaprivir as a third drug. I am currently on the list for that. I have insurance, but little/no drug coverage, so it would be nice to not have to pay for the treatment. She also said that study or not, I should begin treatment some time before the end of the year.
I feel confident with her, mostly because of what I have learned from this site, but because I live so close to the Mayo Clinic, am I wondering if I should get a 2nd opinion from them because they-well, just because they are the Mayo!!??
The information y'all provide is invaluable-Thank you for keeping me-and I am sure many others-sane thru all this!!!
Thanks(x6!)jmjm. The more I think about it-getting the biopsy done now and getting that info sounds like the way to go. If my liver is relatively healthy-I may not want to rush into things.....This is alot to think about!!!
Forgot to add that I'd probably lean toward waiting over the trial as waiting will give you more mature trial data to analyze. Both Vertex and other drugs. But then again it depends on the specific trial..
Forgot to add that I'd probably lean toward waiting over the trial as waiting will give you more mature trial data to analyze. Both Vertex and other drugs. But then again it depends on the specific trial..
I'd probably biopsy or fibroscan with Schiff in Miami. If little or no damage I'd then choose between the Vertex trial (after some study) or waiting for either another trial or newer drugs while having my liver monitored.
Your doc's opinion that you shoild treat this year, no matter what, is just an opinion and I don't agree. Did she tell you why?.
Of course if you want to treat now for other reasons that's another story, but 48 weeks is an awful lot of interferon IMO to pump into a relatively healthy liver.
Your doc's opinion that you shoild treat this year, no matter what, is just an opinion and I don't agree. Did she tell you why?.
Of course if you want to treat now for other reasons that's another story, but 48 weeks is an awful lot of interferon IMO to pump into a relatively healthy liver.
I'd probably biopsy or fibroscan with Schiff in Miami. If little or no damage I'd then choose between the Vertex trial (after some study) or waiting for either another trial or newer drugs while having my liver monitored.
Your doc's opinion that you shoild treat this year, no matter what, is just an opinion and I don't agree. Did she tell you why?.
Of course if you want to treat now for other reasons that's another story, but 48 weeks is an awful lot of interferon IMO to pump into a relatively healthy liver.
Your doc's opinion that you shoild treat this year, no matter what, is just an opinion and I don't agree. Did she tell you why?.
Of course if you want to treat now for other reasons that's another story, but 48 weeks is an awful lot of interferon IMO to pump into a relatively healthy liver.
I'd probably biopsy or fibroscan with Schiff in Miami. If little or no damage I'd then choose between the Vertex trial (after some study) or waiting for either another trial or newer drugs while having my liver monitored.
Your doc's opinion that you shoild treat this year, no matter what, is just an opinion and I don't agree. Did she tell you why?.
Of course if you want to treat now for other reasons that's another story, but 48 weeks is an awful lot of interferon IMO to pump into a relatively healthy liver.
Your doc's opinion that you shoild treat this year, no matter what, is just an opinion and I don't agree. Did she tell you why?.
Of course if you want to treat now for other reasons that's another story, but 48 weeks is an awful lot of interferon IMO to pump into a relatively healthy liver.
My pic is from Jax Beach-what can I say-I'm a local girl that doesn't get out much!! : )
That's basically what I am hoping to hear-"pro-agressive treating"-because what makes is hard to decide to treat is that I feel so good now-shocked-like you-to find out that I am really sick!
Will definately find out about the Procrit.
Thanks!
Will definately find out about the Procrit.
Thanks!
One of the only problems that usually arises when you do a trial program can be that they don't allow Procrit for hemolytic anemia which many of us develop. I would definitely double check that with the doctor - would you be able to use it or not.
Personally for me, I would have had to quit at about week 4 when I had a six point drop in my hemo in just over a week and kept fainting all the time. I had no idea that feeling that bad was possible. I just couldn't have done it without the Procrit - I had geno1A and geno1B also and stage 3 by biopsy - I'd never been sick and was shocked about the whole thing. I did 72 weeks of treatment and am one year post and am SVR.
I'm just saying that because I am very pro-aggressive treating however that Procrit was REALLY important to me.
Good luck!
Personally for me, I would have had to quit at about week 4 when I had a six point drop in my hemo in just over a week and kept fainting all the time. I had no idea that feeling that bad was possible. I just couldn't have done it without the Procrit - I had geno1A and geno1B also and stage 3 by biopsy - I'd never been sick and was shocked about the whole thing. I did 72 weeks of treatment and am one year post and am SVR.
I'm just saying that because I am very pro-aggressive treating however that Procrit was REALLY important to me.
Good luck!
Yea FL! I see you enjoy the beach also!
Thanks for the post. I do have the name of the research coordinator-if I don't hear from her this week, I will give her a call and introduce myself. Interesting info on the Peg-I hesitate to call BC/BS because I am afraid they will find an excuse to cancel my policy not that I am sick!
Thanks for the post. I do have the name of the research coordinator-if I don't hear from her this week, I will give her a call and introduce myself. Interesting info on the Peg-I hesitate to call BC/BS because I am afraid they will find an excuse to cancel my policy not that I am sick!
Another Florida person, it must be the water.
You are fortunate that you are confident in the doc and that she is a hepatologist. If the doc was a Gastro, I'd suggest a consult with a a Hep doc, but you already have.
I'd look into the VX trial and if you don't get in, consider another path. And if you are on 'the list' you might consider making contact every once in a while, not to be a pain in the neck but to remind them that you are out there an that you have continuing interest. If you are able, get a real person's name and make a friendly call every month or so. They might also consider you a candidate for other trials too, be open and try to cultivate a relationship with a trial coordinator or trial manager.
As for your insurance, you make check with you provider and least for the Peg prescription. For me, the Peg was covered under the medical portion of the policy, not the prescription coverage. The riba, however, was in the prescrition coverage realm. Good luck.
You are fortunate that you are confident in the doc and that she is a hepatologist. If the doc was a Gastro, I'd suggest a consult with a a Hep doc, but you already have.
I'd look into the VX trial and if you don't get in, consider another path. And if you are on 'the list' you might consider making contact every once in a while, not to be a pain in the neck but to remind them that you are out there an that you have continuing interest. If you are able, get a real person's name and make a friendly call every month or so. They might also consider you a candidate for other trials too, be open and try to cultivate a relationship with a trial coordinator or trial manager.
As for your insurance, you make check with you provider and least for the Peg prescription. For me, the Peg was covered under the medical portion of the policy, not the prescription coverage. The riba, however, was in the prescrition coverage realm. Good luck.
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