Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

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@squiggylynn

Hello. My husband went through a year of interferon and ribavirin treatment for hep c. This was back in 2005 and he is still having many many health issues following this treatment. Has anyone on this site suffered from severe electrolyte imbalance over the years. My husband has been hospitalized many times over the years with low sodium, magnesium and potassium.

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Hello @squiggylynn and welcome to Mayo Clinic Connect. The aftermath of the treatment your husband had quite some time ago must be challenging.

Can I ask if he has specifically altered his diet around this imbalance? What does he do daily to fend off the dangerously low levels that require him to be hospitalized?

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No he did not alter his diet. Wasn't even sure what we were dealing with until I started researching more on the interferon and ribavirin treatments he went through once a week for a year and that has been just recently trying to understand all of this. It was after the treatments he went thru years of hospitalization for serious Electrolyte imbalances. It was sodium, potassium, magnesium and there was another one but I will have to research it again. The latest hospitalization was in 2014 10 years after the treatments ended.
They would give him intravenous treatments of electrolytes and sometimes it worked after a week of hospitalization and I remember a time I spoke with the Dr. at the VA before releasing him again for me to take him home if he was sure he would be OK and he assured me he would. The very next morning he got out of bed to go to the bathroom and dropped to the floor violently throwing up and he couldn't get up. I called EMS and he was back in another hospital again as we live in the country and EMS does not take him to the VA. He also developed thyroid issues that I one point I believe they diagnosed as Graves disease. My husband owned his own business for years as a Master Medical Gas Plumber working at hospitals. After the treatments it seems like everything fell apart with his health. He went on SS disability for spine issues that all the VA could do was give him pain shots to relieve the pain he was in until they discontinued that because he went on blood thinners. He also developed heart disease had to have a stent put in and has been back to remove some blockage in the stint since. Now for the past 4 years we are dealing with major mental issues. Has been diagnosed with dementia thru the VA. I am understanding from research that the medications he was on for hep c treatment could have attributed to all of what he has been through now for years. His life has changed and deteriorated. Since his hospitalization in 2014 the only thing different the VA has done is put him on prescription strength potassium and so far no more issues with electrolyte imbalance.

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@squiggylynn

Hello. My husband went through a year of interferon and ribavirin treatment for hep c. This was back in 2005 and he is still having many many health issues following this treatment. Has anyone on this site suffered from severe electrolyte imbalance over the years. My husband has been hospitalized many times over the years with low sodium, magnesium and potassium.

Jump to this post

I did all 3 interferon/ribavirin treatments. Finished one year straight in 2006. Tested negative every year for 15 years. Over the 15 years I diagnosed with fibromyalgia, my vision declined, and never recovered my cognitive function. In August 2020, I tested positive again. No possible chance of reinfection. Same genotype. Did one treatment with new DAA and relapsed again after 24 weeks. Getting ready for another new drug regimen. Maybe retest for hepatitis. They might have to do special blood test, apparently it can hide extrahepatic.

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@txnurse66

I did all 3 interferon/ribavirin treatments. Finished one year straight in 2006. Tested negative every year for 15 years. Over the 15 years I diagnosed with fibromyalgia, my vision declined, and never recovered my cognitive function. In August 2020, I tested positive again. No possible chance of reinfection. Same genotype. Did one treatment with new DAA and relapsed again after 24 weeks. Getting ready for another new drug regimen. Maybe retest for hepatitis. They might have to do special blood test, apparently it can hide extrahepatic.

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I'm so sorry to hear that you have tested positive again. I pray this does not happen again. I don't think my husband could handle the treatments anymore.

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I recently posted on another forum but had no responses except for 1 person that told me I might try here instead.
I also had interpheron-ribavirin treatment for hep c and stage 4 cirrhosis 10 yrs ago. Happy to say the horrendous 48 week self injection treatment worked, and I did also as advised by my gastroenterologist, did not touch a drop of alcohol for 8yrs. Had all the horrible side effects as the majority of us did as well, and the brain fog, memory and droppsies stuck around for a long time. Thought I was on my way to a fairly normal life after those 8 yrs....was in great shape physically and mentally.....enter Covid and then the vaccine. 5 days after the Phizer vaccine I was hit like a ton of bricks with headaches, body aches, brain fog, dizziness, shortness of breath, blurry vision, back aches and fatigue so bad I could barely get up and go to work. I thought I had Covid so I went for a test and it was negative...so that's great, I've just got the flu then....but it never went away...for over 3 months. My family dr sent me in May for every blood test, back x-rays, ultrasounds on my abdomen and everything was perfect...I was healthy as a horse she said, except I had a high white blood count in my urine. She said I had a bladder infection. I told her I have no symptoms of that and reminded her of all the other symptoms I do have. There is something really wrong with me. I feel horrible everyday!
My husband asked me one day, when I was having a meltdown, what does it feel like, what is your worse symptom!
I said all of it..it feels like I'm on treatment again. Bam...I wondered if that's what it is? When on my last visit to my dr, I asked if it could have something to do with my treatment of interpheron-ribivirin 10 yrs ago....it is an antiviral treatment, Covid is a virus and they still to this day do not know the reprocussions or long term effects of the Interpheron-ribivirin concoction on a human being. She had no idea but said it very well could be possible and after speaking to 3 pharmacists, they all had the same answer. It definitely could be from the vaccine and your prior treatment. Your body thinks it's being attacked again and the antiviral could be still kicking around...they didn't know... As they have never had any reports on any trials or outcomes or side effects from the Interpheron-ribivirin and the vaccine. So here I am, just hoping someone else out there knows what I am going through and they have had the same type of problems post vaccine. I sometimes do think I am crazy and I do cry a lot because others have no idea how devastating this has been. I am not getting the second shot until I have some type of answers. I don't go out in public much anyway, just to get groceries etc, and always wearing a mask in public. I am self employed as a bookkeeper so can work from home for the most part and am from a small town in Ontario Canada. So if you have had similar side effects or know of someone else, please get in touch with me. It would be good to know I am not alone. Thanks! Stay well.

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Everyone says NO, but I finished a new DAA Epclusa 11/2020, tested negative throughout and 12 weeks after, including 3 days prior to vivid vaccine. Started to feel bad again. At 24 weeks post treatment. My viral load was 5 times higher than when I started meds. Coincidence!!

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@deb1959

I recently posted on another forum but had no responses except for 1 person that told me I might try here instead.
I also had interpheron-ribavirin treatment for hep c and stage 4 cirrhosis 10 yrs ago. Happy to say the horrendous 48 week self injection treatment worked, and I did also as advised by my gastroenterologist, did not touch a drop of alcohol for 8yrs. Had all the horrible side effects as the majority of us did as well, and the brain fog, memory and droppsies stuck around for a long time. Thought I was on my way to a fairly normal life after those 8 yrs....was in great shape physically and mentally.....enter Covid and then the vaccine. 5 days after the Phizer vaccine I was hit like a ton of bricks with headaches, body aches, brain fog, dizziness, shortness of breath, blurry vision, back aches and fatigue so bad I could barely get up and go to work. I thought I had Covid so I went for a test and it was negative...so that's great, I've just got the flu then....but it never went away...for over 3 months. My family dr sent me in May for every blood test, back x-rays, ultrasounds on my abdomen and everything was perfect...I was healthy as a horse she said, except I had a high white blood count in my urine. She said I had a bladder infection. I told her I have no symptoms of that and reminded her of all the other symptoms I do have. There is something really wrong with me. I feel horrible everyday!
My husband asked me one day, when I was having a meltdown, what does it feel like, what is your worse symptom!
I said all of it..it feels like I'm on treatment again. Bam...I wondered if that's what it is? When on my last visit to my dr, I asked if it could have something to do with my treatment of interpheron-ribivirin 10 yrs ago....it is an antiviral treatment, Covid is a virus and they still to this day do not know the reprocussions or long term effects of the Interpheron-ribivirin concoction on a human being. She had no idea but said it very well could be possible and after speaking to 3 pharmacists, they all had the same answer. It definitely could be from the vaccine and your prior treatment. Your body thinks it's being attacked again and the antiviral could be still kicking around...they didn't know... As they have never had any reports on any trials or outcomes or side effects from the Interpheron-ribivirin and the vaccine. So here I am, just hoping someone else out there knows what I am going through and they have had the same type of problems post vaccine. I sometimes do think I am crazy and I do cry a lot because others have no idea how devastating this has been. I am not getting the second shot until I have some type of answers. I don't go out in public much anyway, just to get groceries etc, and always wearing a mask in public. I am self employed as a bookkeeper so can work from home for the most part and am from a small town in Ontario Canada. So if you have had similar side effects or know of someone else, please get in touch with me. It would be good to know I am not alone. Thanks! Stay well.

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I understand. 10 years after treatment. I started to wake up the morning feeling like I had the flu. The first couple of times I thought it was a 24 hour bug. Sometimes it would last a couple of hours and some times a couple of days or weeks. Then it hit me. It was the same symptoms I had when on the drug combo. I get what I call flare ups. I'm fine for a couple of weeks maybe a couple of months. Then I get slammed with all the symptons again. As a result of the combo I have lupus, brain fog, total alipecia and to many symptons to list. I have taken both shots. I had the Moderna vacine and did well. You are not alone! No one knows how this drug combo effects us later in life. Lots of luck. We are here for you.

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Thanks for replying and sorry to hear your still not well. I do think all my recent symptoms and response to the vaccine since the end of April have been directly caused from the vaccine stirring up the antiviral Interpheron and Ribavirin that is obviously still in our system.
Like you, all the symptoms were there every day, then they would subside a bit and I would feel a little better, then..bam...full blown horrible, treatment feeling all over again. And then it would come in waves. It has only been the past couple of weeks that I have had any type of normal day...not every day but more good than bad...that's why I am scared to death to get my second shot. I just can't do that to myself or my husband or my children and grandchildren again. It's devastating for everyone. Please take care and contact me anytime to let me know how you are coping. I hope there are other Hep-C survivers out there that will come forward that are having problems after the vaccine.

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@txnurse66

Everyone says NO, but I finished a new DAA Epclusa 11/2020, tested negative throughout and 12 weeks after, including 3 days prior to vivid vaccine. Started to feel bad again. At 24 weeks post treatment. My viral load was 5 times higher than when I started meds. Coincidence!!

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Was to say Covid Vaccine. I had SVR 12 on 3/1/2021 which was still undetected. Vaccine on 3/4/2021. Started feeling body pain, feverish, lethargy again. Tested detected viral load again 6/2021. I am starting a new regimen of drugs Vosevi and Ribavirin on 8/20/2021. Terrified of that ribavirin! Hopefully third time will be a charm

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@sueleerock

I have many articles I could scan and send you about my research confirming that it fries your bone, but I do not have a computer right now. I'm very curious because you mentioned you were treated through the VA. You were to have intermittent bone density tests if you were treated for a year. Did they give those to you? Yes, my legs hurt terribly during that time when my bones were being fried. I remember her saying "well, it can't be from the medicine."

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@sueleerock Hello you stated you have many articles on what treatments do to your bones. Can you lead me in the right direction to view some of these articles. Thank You so much.

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