I wish I found this sooner. I took interferon in 1997 for 40 weeks, the side affects were horrible, I couldnt do the 52 weeks. I did respond quickly and labs looked good for a few months, then I had to start Ribavirn/interferon around 1999. it seemed to have worked, my labs are normal, I am now on liver transplant list from HCC that developed on my liver. I had an embolization 2 years ago that seems to have killed the tumor, but they tell me it has only bought me time. The past 20+ years my body has been in pain, I push through it and still work, my memory is shot, my co worker say I suffer from CRS (cant remember sh:t) I still get chills as is I just took interferon injections 10 min ago, they are the worst, just happens randomly. good luck to all of you
Have you taken the antivirals available for hep c? Is that what you have? I did the interferon, then interferon with ribaviron. So tired and achy for the whole time. Depressed sometimes too. Did not clear the virus. Finally got antiviral in 2019. Cleared the virus early 2020. Got HCC like you as a result of liver cirrhosis caused by the hep c. Had ablation but haven’t made the two year mark yet. I am on the transplant list but inactive due to good liver function and no new tumor. Wishing you the best.
Hi Krista,
this is just so wrong. doctor's here in Lexington KY are acting like it doesn't exist and that I am an hypochondriac. My life is so horrible and painful that I would rather God took me out. interferon re-wired my immune system n have CVID...lifetime infusions. My bones are dwindling and have a lot of steel in 3 different area's of my body and more to come shortly. No one will help me n I am ready to give up on life! I am a RN and have a master's degree and can't hardly wipe my own bottom some days. who can help us, pls, i need help!!!
I can SO relate to this John...I even WRITHED IN PAIN on an ER stretcher for 6 hours because the Dr didn't believe I had such severe lower back/abdominal pain & UNABLE to urinate in a cup, but just 'narcotic seeking'...It was only when the Nurses changed shifts that one believed me when she found I had a fever since coming in & convinced him to do an abdominal CT...BTW, I was fully insured...He came into the cubicle & literally SLAMMED the bottle of Snapple/contrast on the table & said, 'At least when the results come back I can kick your time wasting ass out of here & get somebody that is really sick in this bed!'...Well, the scan showed I had SEVEN kidney stones! Some had partially passed...and were blocking me from urinating...but there were still 2 in one kidney & 1 in the other, & there was no way to tell how many I had passed B4 my neighbor insisted in driving me to the ER ! As soon as the Tech began to see my scans, she IMMEDIATELY called a Radiologist to see/read them. I was already in early sepsis & at risk for bladder rupture/kidney failure by the time they sedated & catharized me to remove over 2.5 LITRES of brown/cloudy urine. Another Hospital's Crisis Social worker just sent me home when I sought help because I was seriously considering taking my life...She just came out to the ER Triage area & gave me a release form to sign that said I had been medically evaluated and no need for emergent care had been found. When I asked what I should do about feeling suicidal, she didn't even turn around/look at me when she said, 'Just do what I am...go home, get some sleep & don't do that.' Two weeks later my pain meds were refilled & I took 10 Zofran...a med to control severe vomiting...then waited 10 mins B4 taking the entire bottle (90 tabs) of 80 mg Oxycontin...When I didn't answer my phone after trying for an hour, a friend called the Apt Bldg Mgr, who called an Ambulance when she went to my apt & couldn't wake me...Between 2000 & 2004, I was given 3 different 'rounds' of Interferon/Ribavirin & Peg Interferon/Ribavirin...Those treatments did NOTHING for my HCV, just took my THRIVING/active life, Paramedic career, & even my Marriage, & left me in CONSTANT/EXCRUSCIATING pain in every joint of my body, depressed, bedridden almost 24/7...& alone except for my 3 chihuahuas...THEY, & my Faith have been my ONLY answers to, 'WHY DO I KEEP ON DOING THIS?', or stopped ME from asking/Praying not to wake to another day...SO many times...I can't believe with SO MANY of us left with such similar/ongoing symptoms that have left us shadows of the VITAL people we once were, MANY YEARS after taking the same drugs...and with no other explanation...,we just go ignored AND EVEN BERATED AS MALINGERERS, FAKERS, HYPOCHODRIACS &/OR 'DRUG SEEKERS'...by the medical/legal systems. HOW/WHY CAN THIS BE POSSIBLE?!
I wish I found this sooner. I took interferon in 1997 for 40 weeks, the side affects were horrible, I couldnt do the 52 weeks. I did respond quickly and labs looked good for a few months, then I had to start Ribavirn/interferon around 1999. it seemed to have worked, my labs are normal, I am now on liver transplant list from HCC that developed on my liver. I had an embolization 2 years ago that seems to have killed the tumor, but they tell me it has only bought me time. The past 20+ years my body has been in pain, I push through it and still work, my memory is shot, my co worker say I suffer from CRS (cant remember sh:t) I still get chills as is I just took interferon injections 10 min ago, they are the worst, just happens randomly. good luck to all of you
I was diagnosed with HCV 2B in January of 2000...2 weeks after my 37th birthday...So much for the great outlook for the new Millenium...You are the first person who has posted about ongoing random chills/fevers as an ongoing side effect...After 17 yrs with me MY DOGS even wake me to take Advil if the chills/sweats don't...SMH. GOOD LUCK & BLESSINGS TO YOU.
I am horrified to hear these stories of negligence. I went through clinical trials of ribaviron and then later ribaviron and peg interferon also. I do hope you have been successful in getting Epclusa or another antiviral proven to clear HCV. It was only after the breakthrough in 2015 that meds were available at an exorbitant price. But now you can get them and insurance will pay for most of it. If you have not been treated, please look into it now. A cure is only 8 weeks away.
I was diagnosed with HCV 2B in January of 2000...2 weeks after my 37th birthday...So much for the great outlook for the new Millenium...You are the first person who has posted about ongoing random chills/fevers as an ongoing side effect...After 17 yrs with me MY DOGS even wake me to take Advil if the chills/sweats don't...SMH. GOOD LUCK & BLESSINGS TO YOU.
Wow, you too?!? The sweats and chills are terrible. When are doctors going to admit it’s from the after effects of the darn hepatitis-c treatment? My current doctors try to say it’s “hormonal” or “thyroid related”. We all know that’s BS! If it wasn’t for the treatment though, I’d be dead so I weigh out the options and sure, it’s lonely, painful and frustrating but dying from a failed liver, which I was, yeah! That would be horrible, for sure!! It all sucks! The squeaky wheel gets the grease! KEEP COMPLAINING Y’ALL! We will be heard,
I can SO relate to this John...I even WRITHED IN PAIN on an ER stretcher for 6 hours because the Dr didn't believe I had such severe lower back/abdominal pain & UNABLE to urinate in a cup, but just 'narcotic seeking'...It was only when the Nurses changed shifts that one believed me when she found I had a fever since coming in & convinced him to do an abdominal CT...BTW, I was fully insured...He came into the cubicle & literally SLAMMED the bottle of Snapple/contrast on the table & said, 'At least when the results come back I can kick your time wasting ass out of here & get somebody that is really sick in this bed!'...Well, the scan showed I had SEVEN kidney stones! Some had partially passed...and were blocking me from urinating...but there were still 2 in one kidney & 1 in the other, & there was no way to tell how many I had passed B4 my neighbor insisted in driving me to the ER ! As soon as the Tech began to see my scans, she IMMEDIATELY called a Radiologist to see/read them. I was already in early sepsis & at risk for bladder rupture/kidney failure by the time they sedated & catharized me to remove over 2.5 LITRES of brown/cloudy urine. Another Hospital's Crisis Social worker just sent me home when I sought help because I was seriously considering taking my life...She just came out to the ER Triage area & gave me a release form to sign that said I had been medically evaluated and no need for emergent care had been found. When I asked what I should do about feeling suicidal, she didn't even turn around/look at me when she said, 'Just do what I am...go home, get some sleep & don't do that.' Two weeks later my pain meds were refilled & I took 10 Zofran...a med to control severe vomiting...then waited 10 mins B4 taking the entire bottle (90 tabs) of 80 mg Oxycontin...When I didn't answer my phone after trying for an hour, a friend called the Apt Bldg Mgr, who called an Ambulance when she went to my apt & couldn't wake me...Between 2000 & 2004, I was given 3 different 'rounds' of Interferon/Ribavirin & Peg Interferon/Ribavirin...Those treatments did NOTHING for my HCV, just took my THRIVING/active life, Paramedic career, & even my Marriage, & left me in CONSTANT/EXCRUSCIATING pain in every joint of my body, depressed, bedridden almost 24/7...& alone except for my 3 chihuahuas...THEY, & my Faith have been my ONLY answers to, 'WHY DO I KEEP ON DOING THIS?', or stopped ME from asking/Praying not to wake to another day...SO many times...I can't believe with SO MANY of us left with such similar/ongoing symptoms that have left us shadows of the VITAL people we once were, MANY YEARS after taking the same drugs...and with no other explanation...,we just go ignored AND EVEN BERATED AS MALINGERERS, FAKERS, HYPOCHODRIACS &/OR 'DRUG SEEKERS'...by the medical/legal systems. HOW/WHY CAN THIS BE POSSIBLE?!
I am hurting in my heart that you feel so alone! I have no money, which sucks. Food stamps were cut from $200/mo. To $50/month. Eating has become less and less. Sometimes I wonder why I was spared, like you. The Hep-c treatment was terrible and the after effects are worse. My only son died of AIDs at 22-years old in 1996. He contracted the AIDs virus at ten years old through his blood clotting medication called “Factor-8”. Over 10,000 hemophiliacs were “murdered” because the pharmaceutical companies didn’t want to pull 3.2 Billion DOLLARS worth of clotting factor so they let it slide. Oh, we parents were paid $100,000 for each child’s life in a class action suit. Yeah, we aren’t the only people who have their lives seriously ruined by a so called “medication”. Heartless people! Money driven. I sure pray the new world is going to be filled with love! I so look forward to God’s new world…and I pray I get to go!
I had my pegasys in 2010. 48 weeks. i had covid this summer, and the feelings left my hands and feet. The doc said it looks like neropathy. My whole body is wrecked. I cant even stay vertical for 8 hours
I had nerve conduction tests because SOME doctors want to say I have neuropathy….I DON’T!! RADICULOPATHY is what I have also have it in both arms. The medical community has not correlated this to post hep-c treatments. I believe we all need to take part in proving the damage from Peg-elated Interferon/Ribavarin treatment for hep-c. If we don’t proceed to the testing aspect, they, the doctors, will never know. It is our job now to prove and prevent this from happening again!
I had nerve conduction tests because SOME doctors want to say I have neuropathy….I DON’T!! RADICULOPATHY is what I have also have it in both arms. The medical community has not correlated this to post hep-c treatments. I believe we all need to take part in proving the damage from Peg-elated Interferon/Ribavarin treatment for hep-c. If we don’t proceed to the testing aspect, they, the doctors, will never know. It is our job now to prove and prevent this from happening again!
Totally need a test. I remember skipping doses of the ribavirin so I would not have to get a transfusion. That fear was so REAL. I still remember being so scared everyday. I still am. I do not go to the Dr. I am scared Of what they will say and what drugs they want to try on me this time. My body is a wreck, I built houses for years and now i dont know if I can swing a hammer for more then 5 minutes
Totally need a test. I remember skipping doses of the ribavirin so I would not have to get a transfusion. That fear was so REAL. I still remember being so scared everyday. I still am. I do not go to the Dr. I am scared Of what they will say and what drugs they want to try on me this time. My body is a wreck, I built houses for years and now i dont know if I can swing a hammer for more then 5 minutes
Dang! I didn’t miss any treatments cuz my liver was so swollen, I was afraid of dying too soon. I had to take care of my widowed mom. (Daddy got taken at 43 from VietNam war injuries ) I do suggest getting any tests you are able. I have lost my lower region ability to function and am presently getting more tests and specialists appointments …which I hate. Convincing doctors of our plight is one battle we all have to pull together to fight. How will they know if we don’t complain!
..which I HATE doing! Ugh!😑 God bless! Hang in there and make your voice heard! We are in this together since we ALL have been damaged by pharmaceutical products. How long was that tested? So many questions! You are in my prayers! 🙏🏻🙏🏻
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Have you taken the antivirals available for hep c? Is that what you have? I did the interferon, then interferon with ribaviron. So tired and achy for the whole time. Depressed sometimes too. Did not clear the virus. Finally got antiviral in 2019. Cleared the virus early 2020. Got HCC like you as a result of liver cirrhosis caused by the hep c. Had ablation but haven’t made the two year mark yet. I am on the transplant list but inactive due to good liver function and no new tumor. Wishing you the best.
I can SO relate to this John...I even WRITHED IN PAIN on an ER stretcher for 6 hours because the Dr didn't believe I had such severe lower back/abdominal pain & UNABLE to urinate in a cup, but just 'narcotic seeking'...It was only when the Nurses changed shifts that one believed me when she found I had a fever since coming in & convinced him to do an abdominal CT...BTW, I was fully insured...He came into the cubicle & literally SLAMMED the bottle of Snapple/contrast on the table & said, 'At least when the results come back I can kick your time wasting ass out of here & get somebody that is really sick in this bed!'...Well, the scan showed I had SEVEN kidney stones! Some had partially passed...and were blocking me from urinating...but there were still 2 in one kidney & 1 in the other, & there was no way to tell how many I had passed B4 my neighbor insisted in driving me to the ER ! As soon as the Tech began to see my scans, she IMMEDIATELY called a Radiologist to see/read them. I was already in early sepsis & at risk for bladder rupture/kidney failure by the time they sedated & catharized me to remove over 2.5 LITRES of brown/cloudy urine. Another Hospital's Crisis Social worker just sent me home when I sought help because I was seriously considering taking my life...She just came out to the ER Triage area & gave me a release form to sign that said I had been medically evaluated and no need for emergent care had been found. When I asked what I should do about feeling suicidal, she didn't even turn around/look at me when she said, 'Just do what I am...go home, get some sleep & don't do that.' Two weeks later my pain meds were refilled & I took 10 Zofran...a med to control severe vomiting...then waited 10 mins B4 taking the entire bottle (90 tabs) of 80 mg Oxycontin...When I didn't answer my phone after trying for an hour, a friend called the Apt Bldg Mgr, who called an Ambulance when she went to my apt & couldn't wake me...Between 2000 & 2004, I was given 3 different 'rounds' of Interferon/Ribavirin & Peg Interferon/Ribavirin...Those treatments did NOTHING for my HCV, just took my THRIVING/active life, Paramedic career, & even my Marriage, & left me in CONSTANT/EXCRUSCIATING pain in every joint of my body, depressed, bedridden almost 24/7...& alone except for my 3 chihuahuas...THEY, & my Faith have been my ONLY answers to, 'WHY DO I KEEP ON DOING THIS?', or stopped ME from asking/Praying not to wake to another day...SO many times...I can't believe with SO MANY of us left with such similar/ongoing symptoms that have left us shadows of the VITAL people we once were, MANY YEARS after taking the same drugs...and with no other explanation...,we just go ignored AND EVEN BERATED AS MALINGERERS, FAKERS, HYPOCHODRIACS &/OR 'DRUG SEEKERS'...by the medical/legal systems. HOW/WHY CAN THIS BE POSSIBLE?!
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2 ReactionsI was diagnosed with HCV 2B in January of 2000...2 weeks after my 37th birthday...So much for the great outlook for the new Millenium...You are the first person who has posted about ongoing random chills/fevers as an ongoing side effect...After 17 yrs with me MY DOGS even wake me to take Advil if the chills/sweats don't...SMH. GOOD LUCK & BLESSINGS TO YOU.
I am horrified to hear these stories of negligence. I went through clinical trials of ribaviron and then later ribaviron and peg interferon also. I do hope you have been successful in getting Epclusa or another antiviral proven to clear HCV. It was only after the breakthrough in 2015 that meds were available at an exorbitant price. But now you can get them and insurance will pay for most of it. If you have not been treated, please look into it now. A cure is only 8 weeks away.
I am so sorry you feel the way you do. I also feel like I was robbed of a wonderful life. All I can say is I pray for strength for all of us!
Wow, you too?!? The sweats and chills are terrible. When are doctors going to admit it’s from the after effects of the darn hepatitis-c treatment? My current doctors try to say it’s “hormonal” or “thyroid related”. We all know that’s BS! If it wasn’t for the treatment though, I’d be dead so I weigh out the options and sure, it’s lonely, painful and frustrating but dying from a failed liver, which I was, yeah! That would be horrible, for sure!! It all sucks! The squeaky wheel gets the grease! KEEP COMPLAINING Y’ALL! We will be heard,
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Helpful -
Hug
1 ReactionI am hurting in my heart that you feel so alone! I have no money, which sucks. Food stamps were cut from $200/mo. To $50/month. Eating has become less and less. Sometimes I wonder why I was spared, like you. The Hep-c treatment was terrible and the after effects are worse. My only son died of AIDs at 22-years old in 1996. He contracted the AIDs virus at ten years old through his blood clotting medication called “Factor-8”. Over 10,000 hemophiliacs were “murdered” because the pharmaceutical companies didn’t want to pull 3.2 Billion DOLLARS worth of clotting factor so they let it slide. Oh, we parents were paid $100,000 for each child’s life in a class action suit. Yeah, we aren’t the only people who have their lives seriously ruined by a so called “medication”. Heartless people! Money driven. I sure pray the new world is going to be filled with love! I so look forward to God’s new world…and I pray I get to go!
I had nerve conduction tests because SOME doctors want to say I have neuropathy….I DON’T!! RADICULOPATHY is what I have also have it in both arms. The medical community has not correlated this to post hep-c treatments. I believe we all need to take part in proving the damage from Peg-elated Interferon/Ribavarin treatment for hep-c. If we don’t proceed to the testing aspect, they, the doctors, will never know. It is our job now to prove and prevent this from happening again!
Totally need a test. I remember skipping doses of the ribavirin so I would not have to get a transfusion. That fear was so REAL. I still remember being so scared everyday. I still am. I do not go to the Dr. I am scared Of what they will say and what drugs they want to try on me this time. My body is a wreck, I built houses for years and now i dont know if I can swing a hammer for more then 5 minutes
Dang! I didn’t miss any treatments cuz my liver was so swollen, I was afraid of dying too soon. I had to take care of my widowed mom. (Daddy got taken at 43 from VietNam war injuries ) I do suggest getting any tests you are able. I have lost my lower region ability to function and am presently getting more tests and specialists appointments …which I hate. Convincing doctors of our plight is one battle we all have to pull together to fight. How will they know if we don’t complain!
..which I HATE doing! Ugh!😑 God bless! Hang in there and make your voice heard! We are in this together since we ALL have been damaged by pharmaceutical products. How long was that tested? So many questions! You are in my prayers! 🙏🏻🙏🏻