After Hep C Treatment

I have been experiencing permanent side effects after taking Pegasys interferon with ribavirin. I have severe fibromyalgia and chronic fatigue syndrome plus gastritis and esophogitis. I have vision problems. I finished treatment in 2009. I was told my side effects would wear off eventually but instead they are worse. I can no longer work or go to school. I function at less than 30% of normal. How many other people are suffering like me? I read that it is being called post interferon syndrome. What about lawsuits. My life is basically ruined, except I choose to go on the best i can. Klk370

Look up doctor Berkson and triple therapy. He kept me healthy for years until I got sucked into taking Harvoni. Wish I never heard of it. My quality of life is gone. I was healthy before and am miserable now and also there is so much coming out now about liver cancer showing up after Harvoni. Beware!!! I am not sure if they allow email here but I have the FDA reports that show ALL sorts of issues with Harvoni.

Adverse reactions reported to the FDA show issues of pancreatitis. I did not see tumors but since this drug is now known to change our DNA anything is possible.

I had a Doctor that hated big pharma when they would tell him to push new drugs on to people he told them to to hell instead he pushed natural healing more people want a quick fix for being sick and they go to the doctor and they push drugs on you chemicals companies are doing the same they poison the food that causes sickness ,I started eating more organic food and taking more herbs and I have gotten off most of my meds but the damage has already been done but I still feel,better then I ever did

I underwent Pegasys interferom treatment for genotype 3A back in 2009. I have never been the same. I am severely disanoed with unbearable pain, fatigue and cognitive impairment. I also developed severe gastritis. I function up to 30 percent or less of normal. I have been diagnosed with fibromyalgia and chronic fatigue syndrome. I am convinced that my aimen

Ailments are due to the interferon combined with ribavirin. Is there any hope for the many hundreds or more people worldwide who are experiencing permanent side effects after treatment? A label of Post Interferon Syndrome has been given, does this mean that there is research happrning to help people who suffer?

Hi @klk370, we took your questions to a Mayo Clinic Specialty Pharmacist. Here is her response:

"Neuropsychiatric side effects of Hepatitis C treatment with interferon like fatigue, insomnia and pain can occur. Strategies for dealing with fatigue include taking frequent rest periods, napping when possible, and spreading tasks throughout the day based on energy levels. A gradual exercise program like a daily walk can help improve energy levels and improve the patient condition. It is important to maintain adequate hydration with caffeine-free drinks as dehydration can contribute to fatique. Medications that increase dopamine like ropinirole, pramiprexole or amantadine could be tried as there is some indication they may be of benefit in fibromyalgia and fatigue. More research is needed to determine optimal treatment.

Insomnia can contribute to fatigue. Sleep hygiene is the first step in treating insomnia. Sleep hygiene strategies can be found on the Mayo Clinic website (http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/sleep/art-20048379). In patients with severe or refractory insomnia a sleep aid like melatonin or zolpidem can be used during implementation of sleep hygiene strategies train the body back into a natural sleep cycle.

The sedating antidepressant mirtazapine could be used for sleep, mood and pain although there is not as much evidence for use in treating pain. Low-dose Effexor or Pristiq can be used to treat both pain associated with ribavirin treatment and to improve mood. Pain, fatigue and insomnia can often be associated with depression.

Celiac disease could be considered in HCV patient who have been on interferon therapy who present with weight loss, diarrhea and malabsorption that causes nutritional deficiencies. It can present atypically with symptoms of IBS, fatigue, recurring abdominal pain, bloating or excessive gas. Celiac disease is managed by avoidance of gluten which improves symptoms over 2 to 6 weeks.

We found one article that mentioned a dementia-like condition following Peg-Interferon and ribavirin treatment for Hepatitis C although it seems more research is necessary to determine the incidence and optimal treatment for this.

I have searched for any open trials regarding “Post-Interferon Syndrome” or related and couldn’t find anything currently. Clinicaltrials.gov (http://bit.ly/2s7rLZL) is a good place to look for this type of thing.

@klk370 I hope this gives you some hope that there options for treatment and that although more research is needed to provide certain resolution of your symptoms you can feel some comfort that there are others who are working through the same issues. Mayo Clinic Specialty Pharmacists can help patients with Hepatitis and other serious conditions to create optimal drug regimens which maximize the benefit of their treatment while limiting side effects. More information about Mayo Clinic Specialty Pharmacy can be found here http://mayocl.in/2s7pT2S.

I had hepatitis c (genotype 2a) for 23 years and towards the end was very sick (it was irritating how many health care workers told me that it wasn't from the hep c that I felt sick because hep c has no symptoms. That is not correct, especially once you have had it that long!). I was treated in 1997 with interferon and Ribavarin, 3 shots a week for 9 months. I am now in remission, virus undetected. They did not say cured back then. My son, aged 36, contracted the virus from a probe that was inserted in his scalp during his birth and was also treated with interferon and Ribavarin. Neither one of us has felt 100% since treatment. He told me he had research this online and had found a mao clinic paper about post-interferon syndrome, but couldn't find it again later. (He thought it had been purposefully taken down so that people wouldn't file lawsuits against the makers of the drugs, and so that others would not shun treatment. I'm not sure. But I can not find that paper either, and would love to.) In any case, I was pleased to come across post by others who have not felt well since treatment, and mentioning a diagnosis of post-interferon syndrome, be wise it is validating to those of us who are doctors have dismissed even the notion of it. Does anyone know where I can find that paper, or anything about post-interferon syndrome? Although I am so glad to have cleared the virus, I am still, this many years later, suffering from severe fatigue, some brain fog, achy muscles, back pain and some gut issues, which I did not have before treatment. Any information about this would be great.

You are not alone. I finished treatment eight years ago. I to have chronic pain fatigue gastrointestinal problems Barrett's esophagus anxiety depression and something I didn't want to admit I'm loosing it having difficulty remembering.
Your life is not ruined it may seem so it's just changing. We have many things in common. One being having the courage to go on.

Hi @jerbobs, welcome to Connect.
Sounds like you have quite an array of conditions and symptoms to manage. Did you have some of them prior to treatment for Hep C?

I can imagine that it is a big first step to admit that you experience cognitive challenges. There are a lot of memory tips and tricks, and exercises available on the Internet. For example this one for the Epilepsy Society https://www.epilepsysociety.org.uk/memory-aids-reminders-and-brain-training#.WmzMMK6nGpo I especially hate it when I walk into a room with the intent on getting something or doing something, but I forget what it was. Frustrating.

What happens to you most often? What aids have you found to help you to remember things?