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Medical Forum / Diseases and Disorders / Hepatitis / November 2008I'm back after a few years away
It's been a few years since I've been on this site. I see a few names that are still around (Cactus Jammies, Michael Arends, Greyhackles, etc.) Hope all you oldtimers are now clear. A few years ago I stopped 6 weeks of treatment after my doc f67ked up, and my new doc said I didn't need to rx for awhile 'cause my liver was in fairly good shape. That was then! Now he wants to see me again, DOOM AND GLOOM! My LFT came back high. I'm back to check with the team for updates on new meds like Telaprevir (VX950)etc. If I need to fight the dragon again I want it to be easier. I'm older now and if the Peg lowered my white count to the danger point last trip what will it do now? I would like say that I'm glad to see all the new members, however it would be better if they never had to be here. BTW, is Elmo "I'm not a doctor and never played one on TV" still hanging out here? Sue B. -- Message posted using http://www.talkaboutsupport.com/group/alt.support.hepatitis-c/ More information at http://www.talkaboutsupport.com/faq.html >It's been a few years since I've been on this site. I see a few names that >are still around (Cactus Jammies, Michael Arends, Greyhackles, etc.) Hope [quoted text clipped - 12 lines] >out here? >Sue B. Hi Sue! I remember you from back in 2005, battling falling WBC counts along with a doctor that sure seemed like a nitwit from the way he was treating you. If I remember, he never even offered to give Neupogen a try! I sure hope your new doctor has many more clues than that last one! Your new doc might want to have you get a (another?) liver biopsy to grade your current condition before doing anything else. The million dollar question in your case isn't so much whether adding Telaprevir to the treatment mix is a good idea or not, but how to deal with the likely WBC depression once the Peg is flowing. Again, if I remember correctly, your WBC count fell like a shot duck from the beginning - like within the first couple of shots - so finding a way to manage that is going to be the key. In that regard, switching to the alternate Peg-Interferon (if you were on Pegays, switching to Peg-Intron, or vice versa) and having a Neupogen 'script at the ready should be part of the game plan. As for Telaprevir, it sure is looking like a hugely important adjuvant to the standard therapy drugs. Yeah, it has its own set of issues - mostly rash related - that can cause discontinuations, so it's not clear whether it's going to be the right thing to use in all cases. I'd be a bit leery of adding it into a treatment scheme for someone who had such a profound case of neutropenia. Once you've seen your doc again, let us know how things went. I'd be interested in hearing his take on what to do next. Anyway...You came back just as Elmo made a reappearance! You must be a harbinger of good things! :-) Cheers /greyhackles Hey Grey, you have one hell of a memory, I'm impressed! Thanks for th reply and good advise. And I guess that I psychically called Elmo back weird!! I'm not looking forward to another liver stick, the last time it came bac looking so pretty that they second checked it with some kind of nuclea scan, if that's an option, I'm going that route. As far as my WBC, at th time I had rx coverage but my doc said that Neupogen was very expensive! should have asked him if he was paying for it? If I was given it then I ma not have had to come back to this forum. Now I'm going to have to beg th pharma's for freebe's. My new insurance only 'discounts' meds. You mentioned Peg Intron is this something new or old as apposed t pegasys? Thanks Grey, I'll be back with more ?'s for the group in the future I' sure. BTW are you clear yet? HEY ELMO! THIS IS A BIG SHOUT OUT, HOW THE HELL ARE YOU and do you stil have your liver pix site up?? Good stuff. Love to all, Sue B. - Message posted using http://www.talkaboutsupport.com/group/alt.support.hepatitis-c More information at http://www.talkaboutsupport.com/faq.htm >Hey Grey, you have one hell of a memory, I'm impressed! Thanks for the >reply and good advise. And I guess that I psychically called Elmo back, [quoted text clipped - 16 lines] >Love to all, >Sue B. Hi Sue. I understand why you'd rather not get punched in the liver again - there weren't any real options back when I had mine, which was done with only a local anesthetic and when the doc pulled the trigger it left me gasping for breath with one heck of a surprised expression on my face. Peg-Intron is Schering's version of Pegylated Interferon Alpha -2b, as opposed to Roche's Pegasys, Pegylated Interferon Alpha -2a. They are more similar than different, with the key difference being the size of the Peg molecule that carries the interferon (Peg-Intron uses a much smaller molecule than Pegasys). In use, Peg-Intron seems to cause on average somewhat more intense side-effects than Pegasys - not a huge difference, but enough to be measurable. So if you were originally on Peg-Intron, it might make sense to try Pegasys the second time around. Neupogen ("Filgrastim") is indeed pricey, similar to Procrit/Epogen/Aranesp (anti-anemia drugs). The cost could be prohibitive without insurance coverage, but Amgen (the manufacturer) does have Patient Assistance programs that may be of great help. http://www.amgen.com/reimbursement_connection/overview_patient_assistance_progra ms.html As for me, by the luck of the draw, treatment was wildly successful, thanks for asking. I cleared very early in treatment, survived severe anemia thanks to 35 weeks of heavy duty Epogen shots, stayed clear through my 48 weeks and have remained clear ever since. Had my latest checkup this Spring, still no sign of the virus, my LFTs are at the bottom of the normal range, and all of the co-related side effects of the HCV have long since favorably resolved. Mister Liver is a happy puppy :-) Cheers /greyhackles On Nov 4, 11:38 am, "burningdaylight" <burningdayli...@nospam.com> wrote: > It's been a few years since I've been on this site. I see a few names that > are still around (Cactus Jammies, Michael Arends, Greyhackles, etc.) Hope [quoted text clipped - 16 lines] > Message posted usinghttp://www.talkaboutsupport.com/group/alt.support.hepatitis-c/ > More information athttp://www.talkaboutsupport.com/faq.html Hi Sue B, Good luck with your fight with the dragon. Elmo hasn't been here in ages.He refered me to his doctor and i haven't seen him in possibly 2 years. john |
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