Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hi Deb,I,m pretty sure I contracted Hep C In my early days as a Respiratory Therapist.Back then we weren't as careful as we should have been.That was 25 years ago.I wasn't diagnosed until 1997 so at least I saved a lot of worry time.I am 1a also so I can only do my best at staying positive about trying treatment.I know we are a tough one to tx.If I don't make It I won't be the only one by far. Sometimes it's a bitch and sometimes it's a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Heyyyyy Buddy I also have peripheral neuropathy and myopathy problems with muscles. I have been to every specialist know to man probably just like you and the results were the same. Damage to nerve endings and losing the protective covering leaving raw nerve endings exposed and myopathy muscle pains and weakness and it was contributed to all we have been through reaching ESLD a transplant immunosuppressants meds and now in chronic HCV stage again. I think once a person reaches our stage everything if affected and hurts. Lowering my cellcept and a rx of neurontin did help but it's still chronic and constant aches and pains with worse flare ups at times. I try to keep moving stay as active as possible and walk as much as I can every day. I stay constantly busy and my mind working on others things instead of focusing and dwelling on my medical problems and the pains. If not I may become more wacko. I think a lot of our HCV problems stem from Autoimmune Diseases and especially post TP with hardly no immune system left because of the meds and that allows those types of diseases to take over. Autoimmune Diseases are a group of many diseases affecting every system of the body where the immune system mistakenly attacks the cells tissues and organs of a persons own body. I have had HCV geno 1a for 28 years now and have had like many a high positive RA Factor which showed an autoimmune disease of rheumatoid arthritis for all that time but without the joint problems and deformity of RA. I went to all the specialist for all those years and they were stumped at to why I had such a high RA Factor and just recently over the last few years HCV has been linked to it. At this point for me luckily I am not in stage 3 again and we are playing it by ear bx by bx. My Dr's and I have decided without a lot of cell damage now the trmt meds will severely affect my quality of life causing me more pain discomfort and possibly total disability because of other medical problems I have. My benefits at this time would not out weigh my problems and possible some severe for me on trmt. I have talked to quite a few Dr's and specialist I know and all had the same answer - Pegasys was a big disappointment to the medical professionals. It fell well short of all the hype and they were counting on it to be a better trmt option with better results for their HCV pt's especially post TP. I will try the trmt meds on the market when I show advancing stage and hopefully I pray by then non- interferon based or meds with better results and fewer sides will be available. I hope to never sway anyone be relating my HCV medical problems experiences and choices because each HCV pt has their own unique set of medical problems and should make up with own minds along with their treating physicians. HCV ESLD and being post TP has many many related complicated medical problems and choices for pt's and Dr's alike and I post my experiences to let others know as much as possible about this disease. I wish you all the best on trmt meds and I hope and pray you become a long term responder forever !!!!!! Who knows I may be joining you soon on trmt. Love and Hugs. Take Care and God Bless. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hey I totally agree somedays its a bitch somedays a breeze, but most days inbetween. When I was on tx, it was always foggy......always. I am 1A also, and I went into remission for 5 months....it is BACK! and I suppose I will do the tx again, only this time, I will get all my ducks in a row, be prepared...ya know? First time around, I didn't know what to expect....my whole life was turned upside down! Hope today your day was a breeze! Take Care Of You Debbie Hi Deb,I,m pretty sure I contracted Hep C In my early days as a Respiratory Therapist.Back then we weren't as careful as we should have been.That was 25 years ago.I wasn't diagnosed until 1997 so at least I saved a lot of worry time.I am 1a also so I can only do my best at staying positive about trying treatment.I know we are a tough one to tx.If I don't make It I won't be the only one by far. Sometimes it's a bitch and sometimes it's a breeze. May the wind be Always at your back~~ Quote Link to comment Share on other sites More sharing options...
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