It took a few years for my close friends to witness what I am going through, post hep-c- - Interferon/Ribovarin 48-week (eleven months) of treatment - 2001-2002 . Of the two physicians who see me regularly, only one will admit the actual long term effects of the treatment. She has fought for my care and has treated me knowing what is actually is happening. It’s also difficult because we were “required” to “sign-off” on the box warning of efficacy and safety. There was no other treatment, for me, as my liver was failing after a blood transfusion during a bone tumor surgery, that was tainted with the hep-c virus, in 1980. There were no tests at that time for hep-c. I was even laughed at by one doctor saying: “you have non-A, non-B hepatitis…and sent me on my way. It was the beginning of the end…about three years after the harrowing treatment, as far as working and debilitating, did the nightmare begin, and has never ended, over twenty-five years of misery. The alternative is death….but some days that is welcome. My friends get mad when I say this but after seeing how I suffer, they understand, All we can do now is keep telling the medical professionals the facts and pray a LOT! Blessings Naomi, I will keep you in my prayers as this is the only thing I know to do. 🙏🏻😊
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
Yep, all of us who have taken the Hepatitis-C treatment of Interferon and Ribavarin are suffering. How many times do we ALL need to complain and tell the medical community how debilitating post treatment really is? Yes, we “signed” the box warning, but dang! There were no other treatments as there are now. We are not asking for a miracle cure, just comfort us and acknowledge that the symptoms are real and treatment should include pain management and understanding about the brain fog and organ failure (my thyroid has failed) and other symptoms which give the need for long term care. Hepatitis-C treatment has ruined many lives and marriages. (The cure is killing us‼️) If doctors or the medical professionals cannot face the fact that we were medically compromised by the treatment of hep-c with interferon and ribavarin, then something needs to be done to publicly make people aware of this dire situation . There are too many of us that HAD to receive the only treatment available not knowing the life changing after effects would be so devastating! We God bless you all! Keep speaking up. The squeaky wheel gets the grease!
I finished my treatment (48 weeks) in 2010 and my body is still a wreck. I know the 1200mg of ribavirin hurt as well. Memory is just part of it for me. I am still unable to work a full time job
I feel for you. I had become disabled a few years after the 48-week hepatitis-c treatment in 2001-2002. I thought my life was to get better, but after about three years, post treatment, my body began to break down. The muscle spasms and pain that seems to never end and plagues my mind and causes fatigue to the highest degree. The physical and mental anguish causes others problems like high blood pressure and organ compromise. It’s not like this is something that can be “thought away”. This is not a product of imagination , for if I could imagine all my symptoms to just “go away” I would! Which is stupid to even say to anyone who’s suffering, like we have a darn choice! Okay, thanks for reading my venting, it’s been so long to suffer, I thought I was alone in this…NOT SO!! . There are many of us! Keep us in your prayers y’all Stay strong!
Now after 14 years, I have more issues. The spasms phantom pains, and of course they want to take mt galbladder. I say no more doctors. None of them have helped me. I felt better before I had the treatment. Now everyday is a toss up. I lost everything as well. Wife, Job, House, and my dogs. Now I sleep on a couch at my 'girlfriends' house. Living the dream (Nightmare)
Now after 14 years, I have more issues. The spasms phantom pains, and of course they want to take mt galbladder. I say no more doctors. None of them have helped me. I felt better before I had the treatment. Now everyday is a toss up. I lost everything as well. Wife, Job, House, and my dogs. Now I sleep on a couch at my 'girlfriends' house. Living the dream (Nightmare)
Yep, jobycat, there are many of us! Oh, did I forget to mention? I am losing the ability to eliminate my waste products, i.e. urinate and defecate. Oh, of course diabetes is the FIRST thing the medical professionals are taught and wanted to accuse. Me, I had all the labs, mine were excellent. No diabetes, my cholesterol, well, my primary care doctor AND my cardiologist said: “I wish I had your cholesterol numbers!” It runs in my family. I was also thought to have neuropathy…nope, by the nerve conduction tests of my arms and legs I have radiculopathy, nerve damage in my spine, supposedly. Anyway, I have to see a urologist next Tuesday. I’ve been complaining of the loss of feeling to go to the bathroom for over two years, and who knows if it’s from the hep-c treatment?….sure hope it’s not too late! It’s a freaking struggle. Oh, and being an American, during so called COVID, us poor people got $200/month for food per person/Nutrition Assistance, and. NOW, Feb. 2024, on Social Security almost 70 yrs. Old, I only get $36/month food stamps. I was told at the DES office that: “YOU DID GET A RAISE!!” I DID!! A whole $39/month. My rent went up $45 starting last December and auto insurance went up for the first time in years, $9/month. I have to go to food banks, churches, and friends to eat anymore, so, I get it! We have had it so good, as Americans. As long as we are “PRODUCTIVE “!! We are now considered: “CONSUMERS” We “CONSUME” now our country has gone political instead of caring for its own. It hurts! ALL OF US AMERICANS! I will keep you in my prayers jobycat, for it’s all I have!🙏🏻
It took a few years for my close friends to witness what I am going through, post hep-c- - Interferon/Ribovarin 48-week (eleven months) of treatment - 2001-2002 . Of the two physicians who see me regularly, only one will admit the actual long term effects of the treatment. She has fought for my care and has treated me knowing what is actually is happening. It’s also difficult because we were “required” to “sign-off” on the box warning of efficacy and safety. There was no other treatment, for me, as my liver was failing after a blood transfusion during a bone tumor surgery, that was tainted with the hep-c virus, in 1980. There were no tests at that time for hep-c. I was even laughed at by one doctor saying: “you have non-A, non-B hepatitis…and sent me on my way. It was the beginning of the end…about three years after the harrowing treatment, as far as working and debilitating, did the nightmare begin, and has never ended, over twenty-five years of misery. The alternative is death….but some days that is welcome. My friends get mad when I say this but after seeing how I suffer, they understand, All we can do now is keep telling the medical professionals the facts and pray a LOT! Blessings Naomi, I will keep you in my prayers as this is the only thing I know to do. 🙏🏻😊
I really wonder how they can run these nasty drugs through you and expect you to have a normal life after. I am on disability now and have NO life. I cant work. I live with a crazy person that treats me like a child and I will be 58 in a week. no options. I wish there was another way. I just find it hard to give a Dam* about anything anymore. I dont like the person I have become
Can relate @ jobycat. I had a horrible time for 3 years until I finally qualified for Medicare. I've had to couch surf and stayed in homeless shelter. Later, managed to rent a room from schetchy person who had drug addicts in & out. As a result, I was attacked & robbed. Finally, I found a room to rent where I feel safe. After all this trauma I am afraid of most people, so I isolate. At my age, weighing only 117 Lbs, I feel very vulnerable. I'm lonely & irritable.
Wow! I went through the homelessness when my son was alive. He got the AIDs virus through his medication called “Factor-8”, a blood clotting product made from human blood. The blood products were tainted with the AIDs virus and no one told us (mothers, fathers, families of hemophiliacs) so when my son was ten years old, we were told of the infection and given a death sentence, I’ll never forget that day…we, my son was twelve at the time, two years after the contamination. We were told: “your son has AIDs and has 7-10 years to live. He lived until he was 22, 1996 he died! I miss him so! Over ten thousand men, male boys, dads, brothers and babies were infected and died by the hands of the pharmaceutical companies…(two companies admitted they did not do anything to warn the public). They settled in a class action suit…for a hundred thousand per life. What a crock! The government allowed this to happen. Not many people know of this. So, we, as hepatitis-c sufferers are just a drop in the bucket. This all has made me strong but also a little bitter because the medical professionals aren’t calling things as they truly are! Stay strong Naomi. It’s a struggle but hopefully the next life will be full of love and compassion. Okay, sweet lady, have a good day. I’m struggling with excruciating pain today but I’m hoping to get some medical help soon. We will see!?!
I just want to find out when we'll ever find a doctor who is researching this syndrome and can offer enough science to take to a judge and I might be able to have some quality of life before my body gives up completely and I die. I have suffered for 14 years and I'm starting to lose my cognitive abilities.
If anyone knows, please let me know.
Thank you,
Michael Seeley
I just want to find out when we'll ever find a doctor who is researching this syndrome and can offer enough science to take to a judge and I might be able to have some quality of life before my body gives up completely and I die. I have suffered for 14 years and I'm starting to lose my cognitive abilities.
If anyone knows, please let me know.
Thank you,
Michael Seeley
We understand, unfortunately the Medical community does not. It helps to understand our symptoms are real. You go through all the side effects while you’re on it and 10 years later they come back.
Connect
Connect
Like
Helpful
Hug
It took a few years for my close friends to witness what I am going through, post hep-c- - Interferon/Ribovarin 48-week (eleven months) of treatment - 2001-2002 . Of the two physicians who see me regularly, only one will admit the actual long term effects of the treatment. She has fought for my care and has treated me knowing what is actually is happening. It’s also difficult because we were “required” to “sign-off” on the box warning of efficacy and safety. There was no other treatment, for me, as my liver was failing after a blood transfusion during a bone tumor surgery, that was tainted with the hep-c virus, in 1980. There were no tests at that time for hep-c. I was even laughed at by one doctor saying: “you have non-A, non-B hepatitis…and sent me on my way. It was the beginning of the end…about three years after the harrowing treatment, as far as working and debilitating, did the nightmare begin, and has never ended, over twenty-five years of misery. The alternative is death….but some days that is welcome. My friends get mad when I say this but after seeing how I suffer, they understand, All we can do now is keep telling the medical professionals the facts and pray a LOT! Blessings Naomi, I will keep you in my prayers as this is the only thing I know to do. 🙏🏻😊
-
Like -
Helpful -
Hug
1 ReactionYep, all of us who have taken the Hepatitis-C treatment of Interferon and Ribavarin are suffering. How many times do we ALL need to complain and tell the medical community how debilitating post treatment really is? Yes, we “signed” the box warning, but dang! There were no other treatments as there are now. We are not asking for a miracle cure, just comfort us and acknowledge that the symptoms are real and treatment should include pain management and understanding about the brain fog and organ failure (my thyroid has failed) and other symptoms which give the need for long term care. Hepatitis-C treatment has ruined many lives and marriages. (The cure is killing us‼️) If doctors or the medical professionals cannot face the fact that we were medically compromised by the treatment of hep-c with interferon and ribavarin, then something needs to be done to publicly make people aware of this dire situation . There are too many of us that HAD to receive the only treatment available not knowing the life changing after effects would be so devastating! We God bless you all! Keep speaking up. The squeaky wheel gets the grease!
-
Like -
Helpful -
Hug
1 ReactionI feel for you. I had become disabled a few years after the 48-week hepatitis-c treatment in 2001-2002. I thought my life was to get better, but after about three years, post treatment, my body began to break down. The muscle spasms and pain that seems to never end and plagues my mind and causes fatigue to the highest degree. The physical and mental anguish causes others problems like high blood pressure and organ compromise. It’s not like this is something that can be “thought away”. This is not a product of imagination , for if I could imagine all my symptoms to just “go away” I would! Which is stupid to even say to anyone who’s suffering, like we have a darn choice! Okay, thanks for reading my venting, it’s been so long to suffer, I thought I was alone in this…NOT SO!! . There are many of us! Keep us in your prayers y’all Stay strong!
-
Like -
Helpful -
Hug
2 ReactionsNow after 14 years, I have more issues. The spasms phantom pains, and of course they want to take mt galbladder. I say no more doctors. None of them have helped me. I felt better before I had the treatment. Now everyday is a toss up. I lost everything as well. Wife, Job, House, and my dogs. Now I sleep on a couch at my 'girlfriends' house. Living the dream (Nightmare)
Yep, jobycat, there are many of us! Oh, did I forget to mention? I am losing the ability to eliminate my waste products, i.e. urinate and defecate. Oh, of course diabetes is the FIRST thing the medical professionals are taught and wanted to accuse. Me, I had all the labs, mine were excellent. No diabetes, my cholesterol, well, my primary care doctor AND my cardiologist said: “I wish I had your cholesterol numbers!” It runs in my family. I was also thought to have neuropathy…nope, by the nerve conduction tests of my arms and legs I have radiculopathy, nerve damage in my spine, supposedly. Anyway, I have to see a urologist next Tuesday. I’ve been complaining of the loss of feeling to go to the bathroom for over two years, and who knows if it’s from the hep-c treatment?….sure hope it’s not too late! It’s a freaking struggle. Oh, and being an American, during so called COVID, us poor people got $200/month for food per person/Nutrition Assistance, and. NOW, Feb. 2024, on Social Security almost 70 yrs. Old, I only get $36/month food stamps. I was told at the DES office that: “YOU DID GET A RAISE!!” I DID!! A whole $39/month. My rent went up $45 starting last December and auto insurance went up for the first time in years, $9/month. I have to go to food banks, churches, and friends to eat anymore, so, I get it! We have had it so good, as Americans. As long as we are “PRODUCTIVE “!! We are now considered: “CONSUMERS” We “CONSUME” now our country has gone political instead of caring for its own. It hurts! ALL OF US AMERICANS! I will keep you in my prayers jobycat, for it’s all I have!🙏🏻
-
Like -
Helpful -
Hug
2 ReactionsAzmeg,
Thank you. It sounds like you have struggled a lot.
Your response meant a lot to me. I've been feeling all alone lately & it really helped.
Can relate @ jobycat. I had a horrible time for 3 years until I finally qualified for Medicare. I've had to couch surf and stayed in homeless shelter. Later, managed to rent a room from schetchy person who had drug addicts in & out. As a result, I was attacked & robbed. Finally, I found a room to rent where I feel safe. After all this trauma I am afraid of most people, so I isolate. At my age, weighing only 117 Lbs, I feel very vulnerable. I'm lonely & irritable.
-
Like -
Helpful -
Hug
2 ReactionsWow! I went through the homelessness when my son was alive. He got the AIDs virus through his medication called “Factor-8”, a blood clotting product made from human blood. The blood products were tainted with the AIDs virus and no one told us (mothers, fathers, families of hemophiliacs) so when my son was ten years old, we were told of the infection and given a death sentence, I’ll never forget that day…we, my son was twelve at the time, two years after the contamination. We were told: “your son has AIDs and has 7-10 years to live. He lived until he was 22, 1996 he died! I miss him so! Over ten thousand men, male boys, dads, brothers and babies were infected and died by the hands of the pharmaceutical companies…(two companies admitted they did not do anything to warn the public). They settled in a class action suit…for a hundred thousand per life. What a crock! The government allowed this to happen. Not many people know of this. So, we, as hepatitis-c sufferers are just a drop in the bucket. This all has made me strong but also a little bitter because the medical professionals aren’t calling things as they truly are! Stay strong Naomi. It’s a struggle but hopefully the next life will be full of love and compassion. Okay, sweet lady, have a good day. I’m struggling with excruciating pain today but I’m hoping to get some medical help soon. We will see!?!
I just want to find out when we'll ever find a doctor who is researching this syndrome and can offer enough science to take to a judge and I might be able to have some quality of life before my body gives up completely and I die. I have suffered for 14 years and I'm starting to lose my cognitive abilities.
If anyone knows, please let me know.
Thank you,
Michael Seeley
We understand, unfortunately the Medical community does not. It helps to understand our symptoms are real. You go through all the side effects while you’re on it and 10 years later they come back.