so I am a product of this combination therapy for my Hep C at the time. 2000. Honestly no one knew what they were doing, with the exception of one wonderful nurse on the phone. Together we had a plan. I was undetectable at 6 weeks, but remained on the therapy for 6 months. I was happy, of course. It wasn't until I spoke to a doctor around 2010, that did not mince words. He said I was f*cked when I got older. Well here I am at 62 and I am somewhat f*cked. My anxiety and depression are off the charts and it is getting harder and harder to live this way.
so I am a product of this combination therapy for my Hep C at the time. 2000. Honestly no one knew what they were doing, with the exception of one wonderful nurse on the phone. Together we had a plan. I was undetectable at 6 weeks, but remained on the therapy for 6 months. I was happy, of course. It wasn't until I spoke to a doctor around 2010, that did not mince words. He said I was f*cked when I got older. Well here I am at 62 and I am somewhat f*cked. My anxiety and depression are off the charts and it is getting harder and harder to live this way.
Wow what a lovely comment from the doctor… gotta love doctor sometimes in eh…But unfortunately he was right in the case for a lot of us.
And the fun stuff keeps popping up.
I don’t know what to do either. I just try my best to make the best of every day. I do use medical cannabis because I hate using any more chemicals. And you can actually find organic cannabis these days.
I have a brick and mortar business but my husband Is running it now… I am at home doing online business. And I still do my art or whatever makes me happy. Music people even if it’s an online video chat. You got to surround yourself with Happy as best as you can.
What friends I still have… keep telling me I’m a survivor… So I’ll keep trying.
I’ll be waiting to see what litigation happens in the future. In the meantime I’m not gonna hold my breath. It’s hard enough just trying to keep my brain happy without anxiety and depression that exploded after treatment all those years ago. Keep posting people!
At least it gives us validation for now. Something will happen hopefully we will all survive it !
And for a lot of us that’s pretty much what it is…. Trying to keep going mentally and physically🤨
Wow what a lovely comment from the doctor… gotta love doctor sometimes in eh…But unfortunately he was right in the case for a lot of us.
And the fun stuff keeps popping up.
I don’t know what to do either. I just try my best to make the best of every day. I do use medical cannabis because I hate using any more chemicals. And you can actually find organic cannabis these days.
I have a brick and mortar business but my husband Is running it now… I am at home doing online business. And I still do my art or whatever makes me happy. Music people even if it’s an online video chat. You got to surround yourself with Happy as best as you can.
What friends I still have… keep telling me I’m a survivor… So I’ll keep trying.
I’ll be waiting to see what litigation happens in the future. In the meantime I’m not gonna hold my breath. It’s hard enough just trying to keep my brain happy without anxiety and depression that exploded after treatment all those years ago. Keep posting people!
At least it gives us validation for now. Something will happen hopefully we will all survive it !
And for a lot of us that’s pretty much what it is…. Trying to keep going mentally and physically🤨
I’m new to this group. I had pegasy-riboverin-sovaldi 10 years ago. I have mood swings, memory loss that is getting more frequent, anxiety & started having visional & tactile hallucinations that started 5 years ago. My Dr says it’s from the interferon. I’m not even sure I’m the one having them or some other people are. I have a lot of physical conditions that popped up after treatment. And I’m ALWAYS tired & have loss interest in activities I was doing just years ago. And to top it off, I had surgery in Feb to correct damage to my right foot (fell 23 years ago) And still in rehab. 2 days ago I fell & fractured my left ankle. I am not getting any help from my physicians. I believe that treatment for Hep C has messed my body up.
It’s crazy to feel this way & now I’m going to have to walk on my hands (?) I can say Interferon didn’t do this-or maybe it affected my brain to be more fall-prone…..
I’m new to this group. I had pegasy-riboverin-sovaldi 10 years ago. I have mood swings, memory loss that is getting more frequent, anxiety & started having visional & tactile hallucinations that started 5 years ago. My Dr says it’s from the interferon. I’m not even sure I’m the one having them or some other people are. I have a lot of physical conditions that popped up after treatment. And I’m ALWAYS tired & have loss interest in activities I was doing just years ago. And to top it off, I had surgery in Feb to correct damage to my right foot (fell 23 years ago) And still in rehab. 2 days ago I fell & fractured my left ankle. I am not getting any help from my physicians. I believe that treatment for Hep C has messed my body up.
It’s crazy to feel this way & now I’m going to have to walk on my hands (?) I can say Interferon didn’t do this-or maybe it affected my brain to be more fall-prone…..
My heart goes out to you. My symptons started about 10years after treatment. I kept going to the doctor for symptons. Go for a bunch of tests where they found nothing. Eventually the symptoms went away but the severe symptons keep coming back. Yes always tired always spacey. enjoy the good days. It was a relief to find this forum. I understand more of whats happening to my body and we are not crazy. Knowing it's real has helped me alot in dealing with post interfereon syndrome. Best luck to you
I was diagnosed with hvc 1A and the treatment of pegsys, riboviron with vectralis failed. They found the virus six months after treatment was complete. This was in 2012. Then harvoni came on the market and...awesome!
Well I have most of the problems mentioned in the comments and complaints posted and I had no idea that these problems were connected with interferon and riboviron. I was just checking to see if there were any folk being ( decommissioned 'joking term' " no joke") due to the use of vectralis and was causing problems in the body as well. Join me up in any class action lawsuits for any of the three drugs, I'm miserable...please.
Hi @Idestella - I've been deep diving the clinical research on the long term effects of IFN/Ribavirin treatment for Hep C. So far, I've found a 2010 article published by an MD at Johns Hopkins that discusses the documented effects of IFN on some people: "A key principle of the type I IFN system is rapid induction and amplification of the signaling pathway, which generates a feed-forward loop of IFN production, ensuring that a vigorous antiviral immune response is mounted. Although such feed-forward pathways are highly adaptive when it comes to rapid and effective virus eradication, this amplification can be maladaptive in immune responses directed against host tissues." From article: Type I interferons: crucial participants in disease amplification in autoimmunity https://doi.org/10.1038/nrrheum.2009.237
Also, other articles I've found so far perfectly describe these autoimmune symptoms we've suffered all these years, including thyroid disease, and possibly due to changes in the bone marrow and thus blood, caused by this treatment. I'm in the midst of this research and have a class action suit in mind - to be organized for all individuals whose lives have been torpedoed by IFN treatment. I want to be clear that at this point, I have NO idea if a class action suit is feasible, but I am interested in speaking with any and all who have been harmed, and especially if you have documentation of your health conditions and treatment. Personal Injury attorneys often cite the statute of limitations imposed by states - very short time periods. But what about all the class action suits for Mesothelioma (for example) 20+ years after the fact? So many people have been harmed in such extreme ways, not to mention the suicides and deaths. Lisa, since you've spoken to lawyers, I'm interested in talking to you. I also invite others to email me at: assistyoutosucceed@gmail.com PLEASE SEND YOUR NAME, ADDRESS, PHONE NUMBER, EMAIL, ALONG WITH A BRIEF DESCRIPTION OF YOUR TREATMENT AND INJURIES. I will contact you. Thank you, Lisa Gladstone
I was diagnosed with hvc 1A and the treatment of pegsys, riboviron with vectralis failed. They found the virus six months after treatment was complete. This was in 2012. Then harvoni came on the market and...awesome!
Well I have most of the problems mentioned in the comments and complaints posted and I had no idea that these problems were connected with interferon and riboviron. I was just checking to see if there were any folk being ( decommissioned 'joking term' " no joke") due to the use of vectralis and was causing problems in the body as well. Join me up in any class action lawsuits for any of the three drugs, I'm miserable...please.
Hey-
I’m so sorry to hear another one of us is suffering ! My life was completely destroyed as I am/was a RN, MPH. I would be interested to know what signs n symptoms that have made ur life so bad? My immune system is gone, my bones are literally hollow, chronic fatigue syndrome n the list goes on! Glad u found us
Lisa
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so I am a product of this combination therapy for my Hep C at the time. 2000. Honestly no one knew what they were doing, with the exception of one wonderful nurse on the phone. Together we had a plan. I was undetectable at 6 weeks, but remained on the therapy for 6 months. I was happy, of course. It wasn't until I spoke to a doctor around 2010, that did not mince words. He said I was f*cked when I got older. Well here I am at 62 and I am somewhat f*cked. My anxiety and depression are off the charts and it is getting harder and harder to live this way.
-
Like -
Helpful -
Hug
1 ReactionWow what a lovely comment from the doctor… gotta love doctor sometimes in eh…But unfortunately he was right in the case for a lot of us.
And the fun stuff keeps popping up.
I don’t know what to do either. I just try my best to make the best of every day. I do use medical cannabis because I hate using any more chemicals. And you can actually find organic cannabis these days.
I have a brick and mortar business but my husband Is running it now… I am at home doing online business. And I still do my art or whatever makes me happy. Music people even if it’s an online video chat. You got to surround yourself with Happy as best as you can.
What friends I still have… keep telling me I’m a survivor… So I’ll keep trying.
I’ll be waiting to see what litigation happens in the future. In the meantime I’m not gonna hold my breath. It’s hard enough just trying to keep my brain happy without anxiety and depression that exploded after treatment all those years ago. Keep posting people!
At least it gives us validation for now. Something will happen hopefully we will all survive it !
And for a lot of us that’s pretty much what it is…. Trying to keep going mentally and physically🤨
-
Like -
Helpful -
Hug
1 ReactionThank you friend. I'm plugging along, but I just am not myself anymore. I hate to think of it getting worse. Keep me posted. Liz
I’m new to this group. I had pegasy-riboverin-sovaldi 10 years ago. I have mood swings, memory loss that is getting more frequent, anxiety & started having visional & tactile hallucinations that started 5 years ago. My Dr says it’s from the interferon. I’m not even sure I’m the one having them or some other people are. I have a lot of physical conditions that popped up after treatment. And I’m ALWAYS tired & have loss interest in activities I was doing just years ago. And to top it off, I had surgery in Feb to correct damage to my right foot (fell 23 years ago) And still in rehab. 2 days ago I fell & fractured my left ankle. I am not getting any help from my physicians. I believe that treatment for Hep C has messed my body up.
It’s crazy to feel this way & now I’m going to have to walk on my hands (?) I can say Interferon didn’t do this-or maybe it affected my brain to be more fall-prone…..
My heart goes out to you. My symptons started about 10years after treatment. I kept going to the doctor for symptons. Go for a bunch of tests where they found nothing. Eventually the symptoms went away but the severe symptons keep coming back. Yes always tired always spacey. enjoy the good days. It was a relief to find this forum. I understand more of whats happening to my body and we are not crazy. Knowing it's real has helped me alot in dealing with post interfereon syndrome. Best luck to you
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with hvc 1A and the treatment of pegsys, riboviron with vectralis failed. They found the virus six months after treatment was complete. This was in 2012. Then harvoni came on the market and...awesome!
Well I have most of the problems mentioned in the comments and complaints posted and I had no idea that these problems were connected with interferon and riboviron. I was just checking to see if there were any folk being ( decommissioned 'joking term' " no joke") due to the use of vectralis and was causing problems in the body as well. Join me up in any class action lawsuits for any of the three drugs, I'm miserable...please.
-
Like -
Helpful -
Hug
1 ReactionHi @Idestella - I've been deep diving the clinical research on the long term effects of IFN/Ribavirin treatment for Hep C. So far, I've found a 2010 article published by an MD at Johns Hopkins that discusses the documented effects of IFN on some people: "A key principle of the type I IFN system is rapid induction and amplification of the signaling pathway, which generates a feed-forward loop of IFN production, ensuring that a vigorous antiviral immune response is mounted. Although such feed-forward pathways are highly adaptive when it comes to rapid and effective virus eradication, this amplification can be maladaptive in immune responses directed against host tissues." From article: Type I interferons: crucial participants in disease amplification in autoimmunity https://doi.org/10.1038/nrrheum.2009.237
Also, other articles I've found so far perfectly describe these autoimmune symptoms we've suffered all these years, including thyroid disease, and possibly due to changes in the bone marrow and thus blood, caused by this treatment. I'm in the midst of this research and have a class action suit in mind - to be organized for all individuals whose lives have been torpedoed by IFN treatment. I want to be clear that at this point, I have NO idea if a class action suit is feasible, but I am interested in speaking with any and all who have been harmed, and especially if you have documentation of your health conditions and treatment. Personal Injury attorneys often cite the statute of limitations imposed by states - very short time periods. But what about all the class action suits for Mesothelioma (for example) 20+ years after the fact? So many people have been harmed in such extreme ways, not to mention the suicides and deaths. Lisa, since you've spoken to lawyers, I'm interested in talking to you. I also invite others to email me at: assistyoutosucceed@gmail.com PLEASE SEND YOUR NAME, ADDRESS, PHONE NUMBER, EMAIL, ALONG WITH A BRIEF DESCRIPTION OF YOUR TREATMENT AND INJURIES. I will contact you. Thank you, Lisa Gladstone
Hi Lisa, Please check your email for my response. And if you'd like to text me your phone number we can discuss. Blessings, Lisa G.
Pls contact me at lcoffey38@yahoo.com
Hey-
I’m so sorry to hear another one of us is suffering ! My life was completely destroyed as I am/was a RN, MPH. I would be interested to know what signs n symptoms that have made ur life so bad? My immune system is gone, my bones are literally hollow, chronic fatigue syndrome n the list goes on! Glad u found us
Lisa