Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 I would like to welcome our newest members to the group: cub.meome [Maggie] Thank you for joining us. Please say hi so we can all say hi back. love don in ks To post on forum: <--- click here Links Library: http://health.dir./group/ /links <--- click here Our Sponcer: http://www.healthyhepper.com/ <--- click here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Cynde,Thank you so much for the additional information. It makes deciphering where you stand a lot easier... for me it also gives me more insight into where you might be with this whole process. I thought those treatment times were far off.. The normal standard of care is that if your viral load hasn't dropped to an undetectable level by week 12 to stop treatment as it is not going to work. What kind of a doctor are you seeing? Is it a Gastroenterologist or a Hepatologist? Personally, I have dealt with both and found a world of difference between the two. When it comes to hepatitis c a Hepatologist will always be more aggressive and more confident than a Gastro will. The Liver Specialist will look forward for the hep c patient to come to him where the Gastro tends to be put off by hep c. They would rather spend their time in the GI lab where the patients are already sedated. If you want a doctor that has all the latest information and knows how and is willing to do what it takes to get your hep c gone seek out a Hepatologist. They can be hard to find and are usually in larger cities but you can find them. As far as the new treatment goes.. The protease inhibitors are a 3rd drug that is added to the current therapy. So on the new regimen you take an Interferon shot once a week, Ribavirin twice a day and the new drug 2 or 3 times a day depending on the dosage. I take it from your comment that treatment was rough on you.. I feel your pain, I went thru 48 weeks of sheer and utter hell. Treatment at this juncture would be more of the same plus the side effects of the new drugs... which are similar to the sides for the first two. The protease inhibitors are creating more rashes and more or the great things that Interferon did for us! There is a new protocol still being worked on in the labs.. it's a Interferon/Ribavirin free treatment. It is about 3 to 4 years away from production but it is in the labs.. so there is hope for a treatment without the craziness of Interferon and Ribavirin. One key thing to your physical health and well being thru all this is for you to be comfortable and totally happy with your medical team. Not just pacified but totally content that you are in the best hands. If you don't like the doctor, find a new one. If you don't think they have all the answers, find one that does. This is YOUR life that you are putting in their hands. Treat this no different than you would if you had a newborn baby that was critically ill. You would find the very best doctor for the baby right? Find the very best doctor for your liver too.. that's your baby right now. I have fired several doctors.. When I found out I had hep c my GP sent me to a Gastro.. I hated him. He had no bedside manner and was very evasive with some of my questions... I went back to my GP and and asked him the 60 dollar question... " If I was your wife, you daughter or your mother, who would you send me to? " That question catches them off guard every time and you get the name of the best doctor in the area for whatever you're dealing with. I've used this line a lot and it's worked every time. Your doctor should have answers to your questions. Your doctor should be very comfortable with the treatment he is recommending. Your doctor should also have a great bedside manner and be able to calm you down when you start to freak out.. that's a good doctor... Now, when you find that doctor and your insurance changes.. that sucks.. but, check with the doctor and a lot of times they will make arrangements to accept your insurance if you are already a patient. Especially if you are into a treatment process. I hope this helps... if I missed anything, just ask... Hugs,TeriOn Sun, Feb 13, 2011 at 8:29 AM, Cynde Moya <cyndemoya@...> wrote: Hi Teri, and the rest As for your questions about the timing of the interferon regimens, they both were intended to be 48 week treatments. The first time, 3-4 months into it, when the viral load hadn’t responded at all, the docs said to stop. The second treatment round, the viral load did go to 0 at three months, but a couple of months later it broke through and was back up to 49 million (by one of the several confusing counts) so once again the docs said to stop treatment. The docs were in agreement that statistics showed that continuing treatment after either no viral load drop, or a breakthrough of the virus, was not useful. As for me, I feel like I just helped to evolve a bunch of interferon-resistant HepC viruses. I haven’t been diagnosed with ascites or portal hypertension yet. I can feel it in my liver, the portal bubbling and vibrating when it comes time for it to squirt its stuff into my intestines. I can hear the sloshing of fluid in my perineum. I have seen folks with bad ascites, and I’m not there yet. It’s sort of cyclic, it comes and goes, with deep intense itchiness. I’m really not sure I can handle yet another round of that punishing treatment. But I guess I’ll make that decision when the protease inhibitors come around and there’s more news about it. My genotype tested 2 when I was first told of the diagnosis. But now it tests at genotype 1. Don’t ask me what that means. The doctors I have told seem uninterested as well. The symptoms I am having are obviously related to the damage to my liver. The liver palm, spider nevi, these were things I showed my last doctor. She looked carefully and went hmmm, but did not tell me that they were symptoms of HepC. I had to figure that out later, reading websites about signs and symptoms. I am mystified by these clinical encounters; wouldn’t it be useful to tell me that they are signs? Did she even know? Do they withhold information, or do they think I already know? It’s all very strange, and I don’t know what to make of it. This is something I would like to chat about with this list. As my insurance keeps changing, I am now working on training my third set of doctors about HepC and me. When I enter that medical machine, I feel like I’m just entering the decision tree and being blindly processed through it. They say a few soothing words, and send me back home, with little more knowledge than I had before. I guess I need to be more firm with them or something. But this apathy and slow thinking interferes with the encounter as well. Well, thanks for letting me vent. It’s great to hear from other people who know the score. From: Theresa Gottlieb Sent: Saturday, February 12, 2011 12:57 PM Subject: Re: [ ] Welcome New Members Cynde, Welcome to the Warriors! My name is Teri. I was diagnosed with hep c in 2004 and went thru treatment for 48 weeks in 2005-2006. I am one of the lucky ones... I went thru tx and got rid of the virus on my first go around. I am cured. Let me address some of the things in your post for you... As far as how you acquired hep c.. it doesn't matter, not one bit. What matters now is what you do with it now that you know you have it. There are countless ways to get this virus and most of us will never ever know for sure. Even if we can track it back to a blood transfusion, like I thought I could, the possibility exists that it came from a trip to the dentist office or from getting my ears pierced at the mall. Who knows. It's not worth worrying about. You say you have gone thru 2 regimens of treatment... once for 4 months and once for 6 months. What is your genotype? I have never heard of a 4 month regimen... minimum is 6 months. There are new medications coming out that work in connection with the Ribavirin and Interferon that will give you another chance to possibly eradicate the virus. You may need a longer time on treatment or the addition of one of the new protease inhibitors to clear. The symptoms you are describing could very well be from your hep c and the damage to your liver. Not uncommon complaints but I know they are very uncomfortable. There are folks on this forum in all stages of their walk with hep c. From newly diagnosed to on treatment, treated and cured, treated and relapsed and some that have been living with the virus for a variety of reasons. There are people here who are using alternative methods to try to keep their liver healthy and the hep c at bay. Feel free to ask any question.. the only dumb question is the one you didn't ask... Hugs,Teri On Sat, Feb 12, 2011 at 11:35 AM, Cynde Moya <cyndemoya@...> wrote: Hi Gang I’m unsure how I acquired HepC, but I’ve probably had it for 25 years before diagnosis. Since then, I’ve done two treatment regimens – Pegasys (weekly interferon shots + ribavirin) for 4 months; and Infergen (daily interferon shots + ribavirin) for 6 months. Both failed as the virus broke through. The treatments were very successful in frying my brain, however. I haven’t done a lot of networking or info-searching online until recently. But it seems every time I read the symptoms of chronic HepC, it’s a brand new set of signs, that then also correlates to new, mysterious, and unusual feelings that I have been having. For example, ascites, portal hypertension, liver palm, spider nevi. . . and a lot of estrogen. Plus this strange non-sad depression, where I don’t feel emotionally depressed, but my body and mind are sluggish and slow to react. Anyway I’m looking for the good information and support that is supposed to be disseminated by this group. Cyn-0 From: Christ Sent: Monday, February 07, 2011 9:00 AM WebWarriors grp Subject: [ ] Welcome New Members I would like to welcome our newest members to the group: cyn0matic [Cynde] Thank you for joining us. Please say hi so we can all say hi back. love don in ks To post on forum: <--- click here Links Library: http://health.dir./group/ /links <--- click here Our Sponcer: http://www.healthyhepper.com/ <--- click here Quote Link to comment Share on other sites More sharing options...
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