Hi guys looks like this thread may be a bit old , but I’m hopeful it gets active again . I live in new Zealand and had interferon 24 years ago ! It worked and I don’t have hep c .. but ever since then I have never been well , I’ve had so many hospital visits, where they say there’s nothing wrong , I get so fatigued and it’s getting worse! Gastritis problems.. the list goes on . Has anyone had any success with treating the aftermath
Lucelle
Glad it worked for You I was thinking My viral load was low enough when they took me off due to extremely low platelets and so many side effects Diminished eyesight and hearing Vascular problems This was in 2002 was on peg interferon ribavirin for 8 months still have lingering and worsening symptoms I recently found out the Hep C is very much active I see a Gastrointernologist November 2nd for Fibroscan after so many years I am afraid of outcome I contacted Hep C back in 1979 when I had a Blood transfusion due to complications in childbirth anyway The Interferon I believe has Lifetime effects and have not found anything that helps Perhaps though I will be able to be treated with a new Treatment and be rid of the Hep C for good and no additional long time after effects Take Care
Hello-
Interest therapy caused my immune system to just basically quit! I have been diagnosed with Common variable immuno deficiency (cvid) I have a port in my chest n have to get infusions of antibodies for life. I’ve been on 136 antibiotics in 6 yrs
I AM WORKING WITH A GAL WHOM IS PUTTING TOGETHER A CLASS ACTION LAW SUIT. Pls private message me.
Prayers !!!!!! My immune system is drained as well But Not as badly as yours How horrible I hope somehow You can have a better quality of life I had no idea the side effects would persists and worsen I am in on Lawsuit I feel helpless that nothing can be done and I was given tainted Blood but in 1979 They did not check for Hep C But on up side I Am Still Alive Stay Strong Prayers to You
Prayers !!!!!! My immune system is drained as well But Not as badly as yours How horrible I hope somehow You can have a better quality of life I had no idea the side effects would persists and worsen I am in on Lawsuit I feel helpless that nothing can be done and I was given tainted Blood but in 1979 They did not check for Hep C But on up side I Am Still Alive Stay Strong Prayers to You
I feel like there needs to be. I was hoping to find more research on the subject since so many people I know who did the treatment are having similar long term difficulty. I've even looked for studies that need participants. How can we advocate for ourselves and others in this situation? I think the pharmaceutical companies are afraid to address it because they're afraid of lawsuits. I don't want to sue anyone, I just want some validation that I'm not making this up! And maybe some support and understanding.
Anyone else feel this way?
The vision loss combined with other stuff you mentioned is consistent with MS. I always thought it was inherited but it's not so I never looked at it but it's actually stimulated most often by viral infections. Some blood tests I'm requesting are to better monitor my b12 and vit d because decreased levels can be indicative, EBV antibodies to see if theres been a previous exposure of the virus correlated the most with MS and or to see if it's still in the system, Human Herpes 6 antibodies, and the gene HLA DRB1 *1501
Dunno if this helps at all but I think we all know no one else is gonna figure it out for us.
A MS diagnosis could help them better handle the acute issues as they come up.
Post interferon syndrome isn't a diagnosis on its own because there's no roadmap for it. It really just means you suffered viral and chemical exposure that opened the door to encephalitis which depending on if u had this other virus dormant in ya can be stimulated into relapse which would cause the same symptoms experienced thru all the other exposures.
I don't know how much sense I'm making.
Much love to you and I pray u find relief and real SUPPORT
Hello-
Awww but there is a roadmap and my friend whom is working on class action with me figured it out! And we have the proof lol n its a relief to know too!!
I could be the poster child of long-term after treatment side effects of the stuff. My journey began in 1999. Diagnosed A1 at 36. I started with alpha 2b and ribiviren 1 yr. Didn't work. 6 mos later did 6 mos of pegalated and ribiviren. Stopped due to not being effective. 6 mos later started Pegasus and ribiviren for 1 yr. 0 viral count until 3 mos later came back with a vengeance. The best thing about all was the psycho issues with pegalated, the blood count iv treatment with Pegasus, and being sick all the time with it all. And, that's on top of a full time job. In November of 2004,1 month after my last therapy I weighed in at 129 lbs. Average was 165. I felt like I was going to die. And none of it worked! 2016 did Harvony 12 weeks,no side effects! It worked! Still 0 count! 2011, Diagnosed with degenerative s1 and l5 lumbar. Not tissue, but bone and tissue. It's traveling around my body like it's on tour. I lost my teeth, hair, and eyesight. I am not able to get a lower plate, like I could afford it, because of a degenerative mandible. I am on disability now and my wife's family thinks that I am faking it! I wish. I'm 59 now and I am losing my hands and feet due to degenerative issues, and I'm losing my eyes as well as my mind. And it's more and more difficult to receive pain medication because of federal guidelines. I explained this with several doctors and they just stair, slack jaw,like I'm making it all up. Yet,they are the ones that are making all the diagnosis. Now I am dealing with brain fog, high blood pressure, increased degenerative issues with my back and, increasing eyesight loss.
Not trying to cause a fuss ,but my quality of life is for naught. If any one finds a lawyer or lawsuit, please, please contact me. Thank you for letting me vent. No one else cares.
Hello-
Have a bone marrow biopsy done!!!! Mine showed that I STOPPED MAKING BONE!!!! Pls get this done asap to save ur extremities! I have 4 sets of steel now n more to come! Tell ur bone n mineral doctor (nephrology) that my COLLAGEN CROSSLINK WAS 0.005 (nonexistent) n i have the proof! Pls tell ur family that this is ABSOLUTELY REAL and pls email me asap at LCOFFEY38@YAHOO.COM as we r working on a class action!!!! Lisa
Prayers !!!!!! My immune system is drained as well But Not as badly as yours How horrible I hope somehow You can have a better quality of life I had no idea the side effects would persists and worsen I am in on Lawsuit I feel helpless that nothing can be done and I was given tainted Blood but in 1979 They did not check for Hep C But on up side I Am Still Alive Stay Strong Prayers to You
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
I had also gone through the Pegelated Interferon with Ribavarin for 48-weeks in 2001-2002. More and more doctors are acknowledging what we went through but it seems the medical professionals tell us we signed off knowing the “BOX WARNINGS”. I got hep-c from a blood transfusion during a bone tumor surgery in 1980. I was in my mid 20’s. Now, I have days where I can barely walk without excruciating pain. My thyroid started to fail about five or six years ago, I cannot tolerate the synthetic thyroid replacement drugs so I have to take the most expensive one called Armour Thyroid.. I am constantly Tired, Night and day sweating all the time. So much pain everywhere! Yep, there wasn’t any other treatment….at the time, and I was dying! My liver was enlarged, bleeding from my nose daily. Yeah, it saved my life but I am miserable. Have to trust the Lord…every day! it’s tough!
Prayers !!!!!! My immune system is drained as well But Not as badly as yours How horrible I hope somehow You can have a better quality of life I had no idea the side effects would persists and worsen I am in on Lawsuit I feel helpless that nothing can be done and I was given tainted Blood but in 1979 They did not check for Hep C But on up side I Am Still Alive Stay Strong Prayers to You
Yes, I also was given tainted blood in 1980 during a bone tumor surgery. From what I understand, we had to sign a sort of waiver saying we understood the long term side effects of Interferon and Ribavarin for the treatment of hep-c, were unknown at the time. They supposedly covered their butts but I do not believe me, dying at the time, had any other choice. Yes, it is bunk what we have to deal with this life changing, debilitating side effects from a medication. Some doctors have been insensitive, in the past, and made me feel like I was not in the pain I’m in daily but we all need to speak up so they DO KNOW what we are experiencing. (My thyroid has failed also) Thank you for this forum! God bless everyone. We need to trust in the Lord! 🙏🏻❤️ keep fighting!
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Glad it worked for You I was thinking My viral load was low enough when they took me off due to extremely low platelets and so many side effects Diminished eyesight and hearing Vascular problems This was in 2002 was on peg interferon ribavirin for 8 months still have lingering and worsening symptoms I recently found out the Hep C is very much active I see a Gastrointernologist November 2nd for Fibroscan after so many years I am afraid of outcome I contacted Hep C back in 1979 when I had a Blood transfusion due to complications in childbirth anyway The Interferon I believe has Lifetime effects and have not found anything that helps Perhaps though I will be able to be treated with a new Treatment and be rid of the Hep C for good and no additional long time after effects Take Care
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2 ReactionsPrayers !!!!!! My immune system is drained as well But Not as badly as yours How horrible I hope somehow You can have a better quality of life I had no idea the side effects would persists and worsen I am in on Lawsuit I feel helpless that nothing can be done and I was given tainted Blood but in 1979 They did not check for Hep C But on up side I Am Still Alive Stay Strong Prayers to You
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1 ReactionHi-can u contact me pls
No! That poison gave me rage! Synonym for rage, Resentment. I want to kill. But wont.
Hello-
Awww but there is a roadmap and my friend whom is working on class action with me figured it out! And we have the proof lol n its a relief to know too!!
Hello-
Have a bone marrow biopsy done!!!! Mine showed that I STOPPED MAKING BONE!!!! Pls get this done asap to save ur extremities! I have 4 sets of steel now n more to come! Tell ur bone n mineral doctor (nephrology) that my COLLAGEN CROSSLINK WAS 0.005 (nonexistent) n i have the proof! Pls tell ur family that this is ABSOLUTELY REAL and pls email me asap at LCOFFEY38@YAHOO.COM as we r working on a class action!!!! Lisa
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1 ReactionLCOFFEY38@YAHOO.COM
Hi I'm also messed up from interferon and ribaviein treatment. There has to be someone that can help us...so tired of living this way.
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1 ReactionI had also gone through the Pegelated Interferon with Ribavarin for 48-weeks in 2001-2002. More and more doctors are acknowledging what we went through but it seems the medical professionals tell us we signed off knowing the “BOX WARNINGS”. I got hep-c from a blood transfusion during a bone tumor surgery in 1980. I was in my mid 20’s. Now, I have days where I can barely walk without excruciating pain. My thyroid started to fail about five or six years ago, I cannot tolerate the synthetic thyroid replacement drugs so I have to take the most expensive one called Armour Thyroid.. I am constantly Tired, Night and day sweating all the time. So much pain everywhere! Yep, there wasn’t any other treatment….at the time, and I was dying! My liver was enlarged, bleeding from my nose daily. Yeah, it saved my life but I am miserable. Have to trust the Lord…every day! it’s tough!
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Hug
3 ReactionsYes, I also was given tainted blood in 1980 during a bone tumor surgery. From what I understand, we had to sign a sort of waiver saying we understood the long term side effects of Interferon and Ribavarin for the treatment of hep-c, were unknown at the time. They supposedly covered their butts but I do not believe me, dying at the time, had any other choice. Yes, it is bunk what we have to deal with this life changing, debilitating side effects from a medication. Some doctors have been insensitive, in the past, and made me feel like I was not in the pain I’m in daily but we all need to speak up so they DO KNOW what we are experiencing. (My thyroid has failed also) Thank you for this forum! God bless everyone. We need to trust in the Lord! 🙏🏻❤️ keep fighting!
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