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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!
Replies to "My name is Barbara... I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos..."
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.
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.
Hi Barbara from another Barbara. I am 24years post Intron Interferon Alpha 2A. I was given 10 million units of interferon intermuscular shots three times a week for 52 weeks. It was a drug trial and that was the only drug I was given other than some pain pills after life became unbearable. I have felt sick since the day I took the drug. Other than the time I took off for treatment, I did manage to keep working up until three years agowhen I came down with two autoimmune disease. I worked for community colleges for most of my work life and truly miss the students and other staff members. I feel like each day I lose more ability to do just about anything.
I am trying to find treatment for Post Interferon Syndrome that I know I have without ever having a doctor diagnose it. I hit every symptom on the list I found on this site, but now am trying to find a doctor to treat it. I don't know where to turn so I am hoping someone will respond and maybe help both of us as we struggle to get better. I sincerely wish you all the best and hope someone will reach out to both of us with some answers.
I stopped posting on this site because it wasn’t helpful.
I am going to another doctor who I trust. I have been unable to get the bone density test results, they no longer exist. This would prove it was the medicine that fried my bones. I am going to try and locate the doctor. I think she might remember me for I was 49 and she was astounded by the results, and stated “I don’t know what you’ve been doing but you have the bones of a 20 year old.
My understanding is that if you end up with debilitating, crippling results of medication statute don’t apply. And you can still file a lawsuit. Does anyone know about this issue?
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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