Happy Easter to you too Marko1. Just keep on trucking, as the Grateful Dead would say. That seems so long ago that I saw them, when in reality life is going by way too fast. The Mayo Clinic isn't responding probably because we are fucked and they know it. Over time, the after effects from being put on those drugs continues to worsen for us and so the angrier we become. The thing that sucks is the statute of limitations. You have very little time to file a lawsuit so the doctor wins again. Since this has happened to me i make sure and research every drug they try and put me on. Most drugs i decline and just live with pain. Your best bet is to find a good naturopath.
Just thought I'd let everyone know that my stepfather lived to be 96. He was a previous drinker and he smoked a pipe and cigars on occasion. His advice to me was DONT TAKE ANY OF THEIR "MEDICINE." He swore by it, never did and lived to be 96. He refused to even take an NSAID, he took nothing.
Just thought I'd let everyone know that my stepfather lived to be 96. He was a previous drinker and he smoked a pipe and cigars on occasion. His advice to me was DONT TAKE ANY OF THEIR "MEDICINE." He swore by it, never did and lived to be 96. He refused to even take an NSAID, he took nothing.
There aren’t many people posting here. Maybe they think only a few people suffer like this? Maybe they’re right? Maybe only a few of us do suffer like this. Maybe no one monitors the site?
Believe me, there are thousands. There are other sites that have a lot more people on them. I will find out the name of the one I've been following and post it. I knew about the others way before i became aware of this one. There was a post i read on that site that brought me to this site. Indicating that the mayo clinic actually put a name on our suffering, but offered us no action in fighting back. It is as if we are dying from the inside out and that is supposed to be okay. I have so much anger i would be jailed if i said how i really feel about what the doctor did to me.
My god. I’m going insane with sadness and I thought I it was because I am weak and spoiled. So many Doctors and not one has said 26 months of interferon, then 6 more months with interferon/Ribavirin, could do this to me. They shake their heads, maybe make a note, wait till I stop talking and move on. I’m on 3 antidepressants which help, sort of. I don’t talk about it to anyone because I sound like a whiner and no body believes me anyway. The only time I felt ok was when I taking oxicoton for cancer surgery. I’m having minor surgery next week and I’m going to ask the anesthesia guy to put me out slowly so I can feel normal for 15 seconds. marko1 and sueleerock, just say hello and let me know you read this.
I too suffer from such bad depression, my immune system was fried so now i have a lifetime of nasty infusions, i was a RN n now can barely survive, im so so sorry that u r going thru such a hard time also. pm me anytime pls xo
Hi lisa. I am 8 years post Pegasus interferon and ribavirin, and have similar symptoms. I have severe chronic fatigue syndrome and severe fibromyalgia. I have gastritis and eyesight problems. I am barely functioning. I get terrible brain fog as well. I know these symptoms were caused by the interferon. I was very fit and healthy before doing the treatment.
Krista
My name is Barbara... I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes... the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.
I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!
My name is Barbara... I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes... the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.
I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!
hi barbara, these stories r just devastating as is my own. i am 8 yrs post tx n i am mostly housebound also. i have to rest every other hr in order to get thru a day. my immune system was fried n now have CVID with predominant B cell damage, sjogrens syndrome, as u also, i am a rn n have a master's degree but can not remember anything...i mean anything anymore. my bones hurt so bad i lie in bed n cry...especially before a storm. somedays think i would be better off gone...the depression is overwhelming some days!!
I am so sorry that u r going thru this also as i wouldn't wish this life upon anyone. pls keep in touch xo
My name is Barbara... I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes... the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.
I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!
Hello Barbara, I am 64 and am feeling that there really is never going to be any hope of bringing back the person we once were. I am too sick to work. Constantly looking for another supplement that doesn't do shit. We were the guinea pigs that fattened their wallet. They should have cut my dose, but if they are getting paid thousands of dollars for how much they prescribe, they aren't going to do that. Take care..Sue.
Believe me, there are thousands. There are other sites that have a lot more people on them. I will find out the name of the one I've been following and post it. I knew about the others way before i became aware of this one. There was a post i read on that site that brought me to this site. Indicating that the mayo clinic actually put a name on our suffering, but offered us no action in fighting back. It is as if we are dying from the inside out and that is supposed to be okay. I have so much anger i would be jailed if i said how i really feel about what the doctor did to me.
Can you post the name of the other sites. I believe you that there are a lot of us, but I would like to see for myself. I don’t know anyone who goes what we go through.
My name is Barbara... I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes... the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.
I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!
My depression is severe even with medication. It just gets worse. Sometimes I hear people say they don’t understand why anyone would kill themselves. I do.
Can you post the name of the other sites. I believe you that there are a lot of us, but I would like to see for myself. I don’t know anyone who goes what we go through.
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Just thought I'd let everyone know that my stepfather lived to be 96. He was a previous drinker and he smoked a pipe and cigars on occasion. His advice to me was DONT TAKE ANY OF THEIR "MEDICINE." He swore by it, never did and lived to be 96. He refused to even take an NSAID, he took nothing.
There aren’t many people posting here. Maybe they think only a few people suffer like this? Maybe they’re right? Maybe only a few of us do suffer like this. Maybe no one monitors the site?
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1 ReactionBelieve me, there are thousands. There are other sites that have a lot more people on them. I will find out the name of the one I've been following and post it. I knew about the others way before i became aware of this one. There was a post i read on that site that brought me to this site. Indicating that the mayo clinic actually put a name on our suffering, but offered us no action in fighting back. It is as if we are dying from the inside out and that is supposed to be okay. I have so much anger i would be jailed if i said how i really feel about what the doctor did to me.
I too suffer from such bad depression, my immune system was fried so now i have a lifetime of nasty infusions, i was a RN n now can barely survive, im so so sorry that u r going thru such a hard time also. pm me anytime pls xo
My name is Barbara... I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes... the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.
I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!
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2 Reactionshi barbara, these stories r just devastating as is my own. i am 8 yrs post tx n i am mostly housebound also. i have to rest every other hr in order to get thru a day. my immune system was fried n now have CVID with predominant B cell damage, sjogrens syndrome, as u also, i am a rn n have a master's degree but can not remember anything...i mean anything anymore. my bones hurt so bad i lie in bed n cry...especially before a storm. somedays think i would be better off gone...the depression is overwhelming some days!!
I am so sorry that u r going thru this also as i wouldn't wish this life upon anyone. pls keep in touch xo
Hello Barbara, I am 64 and am feeling that there really is never going to be any hope of bringing back the person we once were. I am too sick to work. Constantly looking for another supplement that doesn't do shit. We were the guinea pigs that fattened their wallet. They should have cut my dose, but if they are getting paid thousands of dollars for how much they prescribe, they aren't going to do that. Take care..Sue.
Can you post the name of the other sites. I believe you that there are a lot of us, but I would like to see for myself. I don’t know anyone who goes what we go through.
My depression is severe even with medication. It just gets worse. Sometimes I hear people say they don’t understand why anyone would kill themselves. I do.
My son broke his leg, so I've been very busy -- no fun when I myself do not feel well, and this would not have happened if he had not been drunk. Here is one site:
http://www.medhelp.org/posts/Hepatitus-C/Long-term-side-effects-of-interferon
I have a print out from 2011, no longer have a computer.