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Medical Forum / Diseases and Disorders / Hepatitis / January 2005Difficult Doctor
Hi All, After 28 weeks on tx my vl is still at 150,000 after briefly bottoming out at 75,000. (type 2 geno, original vl at 3.4mm) I asked my Doc for Infergen and he gives me the phone # to the company and tells me to call them to get the names of some trials in the area. I asked him several times to put me on it but for some reason he is very reluctant to do it, I do not want to wait another 3-4 weeks until I can get started becaus every day allows my vl to increase thereby making it harder to respond. I would prefer to continue my treatment with infergen at this point but am having trouble locating a Doc who will do it or even one whois even familiar with it, Does it make sense to continue at this point with the infergen or would it really make no difference if I took a break and started it again later. I feel I have put 6 months in and do not want tohave to repeat that unnecessarily. Also any one know of a Doc inthe LA Santa Monica area I could contact. thanx bc >Hi All, >After 28 weeks on tx my vl is still at 150,000 after briefly bottoming out [quoted text clipped - 15 lines] >thanx >bc You're the first genotype 2 non-responder I've run across. It shouldn't be that hard finding someone who will prescribe infergen. Your doctor wouldn't explain why the aversion to infergen? I think many doctors like to have a rest period before trying another treatment. If my treatment with pegasys/riba is unsuccessful my doctor says we will try daily infergen/riba. But not until after a 6 month wait. Hi BC, Sorry, must be a bummer. I would check this link for some further information: http://www.hepatitisneighborhood.com/ See if you can talk with some people in the associations. You can look at Dr. Ben Cecil's b-board and post there, however it takes him a while to write - and only if he has time: http://www.hcvinprison.org/forum_new/default.asp I guess see if you can just write to a few doctors (send faxes) in your area and maybe they will reply without you having to spend money (if that's the case) to see them if they would not give you this treatment. I'm the support person for someone on this board who started treatment, then had to re-start it again. We don't have any lab results other than some of the counts. It is a realy scary thing. Best of luck to you. If you can take a day off of work, start calling up the associations and just talk with as many people as you can. Hang in there. I'm sure you're frantic. Keep us posted. -Wendy Thank yo for the help Wendy, I did email Dr Cecil and he said he would be willing to help but also said I should be able to find a local Doc. He also said the odds were 20-25% Infergen would work, Not great since I went from 80% to 20, does not look real good. thanx again bc > Hi BC, > Sorry, must be a bummer. I would check this link for some further [quoted text clipped - 17 lines] > up the associations and just talk with as many people as you can. Hang > in there. I'm sure you're frantic. Keep us posted. -Wendy BC, How long would it take to know if the Infergen was working? Three months? Could you afford to take it? What is your level of liver damage? I did ask Larry to ask his doctor and his doctor about the Infergen since he was going today. He said depending on your individual condition, they may recommend a gap in time between when you start the Infergen. I thought Dr. Cecil would want to switch you to a higher dosage of Riba or different Interferon :(. He may have just responded to you quickly. Maybe (I know it takes nerve) write again and see if there are any other alternatives. As about switching to another medicine or if there's anything else he can suggest. You can ask him about herbal studies or other clinical trials. In the meantime, I know this must be devastating. Try to hang onto it. I'll try to send you healing colors spiritually and pray for the best. Try not to lose hope. I'll keep checking around for you. Next week, if I make it to a lecture here, they are going to tell us about alternative medicines and Hep C. The drug company funds this support group though, so we'll see. If you go to Amazon.com and see about dr. Zhang's book, I think people there discuss how you can get into his protocols. I think they have some success in keeping the virus at bay. It won't be a cure though. I am just throwing out ideas. Larry is only one month into tx since he had a false start - long story, but he needed to boost his red and white counts first, so now he's back in the game. If you get really nervous, get some meds from the doctor to help with the anxiety as you go through this process. Well, take care. -Wendy Hey Wendy It's so nice that you have joined this ng. Your doing such a damn good job with the folks here. Good luck to your hubby Larry and his new start on tx. I was a 1a and have been clear for almost 3 years. Keep up the good work Juanita Liver damage is minimal so it could be alot worse, the 6 mos of tx did not really do to much to me as I feel I couls at least try 2-3 mos of infergen. thanx bc > BC, > How long would it take to know if the Infergen was working? Three [quoted text clipped - 23 lines] > game. If you get really nervous, get some meds from the doctor to help > with the anxiety as you go through this process. Well, take care. -Wendy >Hi All, >After 28 weeks on tx my vl is still at 150,000 after briefly bottoming out [quoted text clipped - 15 lines] >thanx >bc I was reading an article recently that said it is best to move right onto the infergen from peg. I'll look and see if I can find it. -Rit That is kind of what I thought , why wait to get the vl back up? thanx bc > >Hi All, > >After 28 weeks on tx my vl is still at 150,000 after briefly bottoming out [quoted text clipped - 19 lines] > onto the infergen from peg. I'll look and see if I can find it. > -Rit > Hi All, > After 28 weeks on tx my vl is still at 150,000 after briefly bottoming out [quoted text clipped - 19 lines] > thanx > bc I changed to Infergen from Pegasys without any break.Doc didn't want any gaps between treatments.Now I'm on PegIntron and he did the same thing with this switch. BrianD How is it working, how long have you been on tx? I hope the best for you in any case, bc > > Hi All, > > After 28 weeks on tx my vl is still at 150,000 after briefly bottoming out [quoted text clipped - 25 lines] > > BrianD I've been on tx since November 2003.Pegasys did very little for me,Infergen brought me down to undetectable for a little while then up to 50,000,now PegIntron doesn't seem to be doing much either.Nothing else left but waiting for something new.Hope you have better luck. Peace & SVR, BrianD > How is it working, how long have you been on tx? > I hope the best for you in any case, [quoted text clipped - 38 lines] >> >> BrianD wow, you have been on tx for 1 yr and 4 months or so? what geno are u? I had hopes since I was geno 2 but I guess not. good luck bc > I've been on tx since November 2003.Pegasys did very little for me,Infergen > brought me down to undetectable for a little while then up to 50,000,now [quoted text clipped - 46 lines] > >> > >> BrianD |
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