Post Interferon Syndrome

[Correction: I had interferon alpha 2b, not 2a, and yes, it was daily Rebetol.]

Hi,
I was treated for Hep C (genotype 2A) in 2001 with weekly 80 mcg Peg-Intron (interferon alpha 2b) and 400 mg daily Rebetol. (I know I had the ribavirin, I just don't remember the frequency.) The treatment lasted 8 months after which I had SVR.

In 2013 I injured my neck by moving it the wrong way. In 2016 I couldn't work anymore because I couldn't sit behind a computer more than an hour a day. I tried to get better with physical therapy and yoga. In 2010 I had severe exercise intolerance. My doctor said I might be going hypoglycemic, so I tracked my blood sugar. It would go low at the beginning of walking, then spike by the end. After five years, I figured out how to manage that: lower carb diet, protein snack immediately after exercise, and putting my feet up for at least 15 minutes a day.

I also had brain fog. I couldn't go back to my technical job. I tried freelancing, but it took too much effort to do it efficiently. I couldn't remember anything. I still can't remember anything and have to write EVERYTHING down. I attributed it to stress and post-menopausal menobrain.

Nothing improved and eventually I ended up with full-body pain, which is where I am now. My muscles cramp and my bones ache. I tried more exercise (which is what everyone suggested) and that made it worse, so I took two months off from that and just did physical therapy. It still got worse. The doctor ordered an MRI, which showed facet joint arthritis, in addition to knee and hand osteoarthritis that we knew about.

My doctor said to just take Tylenol (acetaminophen). After I picked my jaw up from the floor, I started wondering how something so life-changing would be judged as innocent enough as to be helped by acetaminophen. (I also wondered if acetaminophen was even safe for someone who had had Hep C.)

It wasn't until then that the words "post-interferon syndrome" popped up in my brain. I had read about it before, but didn't think it applied to me. My 8 months of treatment weren't that bad. Yes, I just went to work and slept and had to put my whole life on hold, but the doctor prescribed medicine for the nausea and any other side effects that I mentioned.

But here I am, almost 20 years past treatment, and I'm beginning to wonder. I am thankful that I have a liver left, and I realize that it might have been impossible to forecast such long-term effects, so I'm not angry. But I *am* frustrated by this chronic pain. I also worry that my doctors think I'm a big baby since they can't see reasons for the amount of pain I'm in.

I use a topical CBD cream, which seems to help, and sometimes also CBD drops. The problem with that is that is doesn't last. Every 3-4 hours the pain returns. I recently bought a CBD patch, which I'll be trying soon. CBD, of course, isn't covered by insurance, and I'm not working. The other less-expensive options (ice, heat, TENS unit, menthol rub, lidocaine rub) don't work as well or last as long, but they do help my medical expenses. Prescription lidocaine patches also help, but this is an off-label usage, so it's hard to get them prescribed. My doctor had me try Cymbalta, but stopped the trial because it wasn't showing any effect.

I'm curious to see how many others are around 20 years post-treatment and if you have chronic muscle, bone, and nerve pain -- I think I saw a few posts here -- and how you're dealing with it.

Mar2a

Thank you for sharing your experience. I completed treatment in 2014. My life has never been the same. Interferon/ribovarin has done more damage to my mind, body and emotions than anything else i have ever experienced. It's a personal holocaust only known by those who have been led down this dark tunnel of false hopes. The true hope was to clear the virus and have improved quality of life - health, vitality, opportunities, freedom. What i ended up with was severe and chronic suicidal depression, skin problems, gut problems, immune problems, hypersensitivity to drugs/chemicals/noise/smells/ light etc, chronic fatigue, brain fog, flu like symptoms after stress or exertion, loss of income, connections and thousands of lost dollars trying to treat post inteferon illnesses. I had to do a lot of work to let go of the resentments towards the staff who treated me - how could anyone knowing the side effects ever dispense such brutal and barbaric drugs. God forgive you and the drug companies. Ive lost my life, a successful career, hopes and dreams. I was always a go-getter...active and achieving. Now, my quality of life is lower than ive ever known or could conceive. I still regret i ever agreed to take this drug. Money could never compensate the anguish and suffering it has caused. If there were to be any compensation, its use would be to help access and pay for all the medical treatments to deal with long term side effects. I saw a holistic dr in 2017 for cfs. When i told her i was on inteferon, she said :"no wonder you're fatigued - didnt you know that drug causes wide spread organ damage". Like has been said, most Drs aren't interested in us. But there is a justice in the end, some where, someplace. We are not forgotten. There is One who sees all. May the Force be with you and strengthen you my fellow sufferers. We will have our day in the end.

Hi, I still cry when i read these. I had treatment in 2011 n has destroyed my life. PLS EVERYONE...U HAVE TO TURN THESE DRUGS IN THE FDA, THEN CONTACT MERCK AS I AM DOING!!! Pls contact me as i will never give up the fight...i was a RN n have a MPH n now hardly able to function on a daily basis...i feel like i am slowly dying everyday while losing my mind.

Hi, I still cry when i read these. I had treatment in 2011 n has destroyed my life. PLS EVERYONE...U HAVE TO TURN THESE DRUGS IN THE FDA, THEN CONTACT MERCK AS I AM DOING!!! Pls contact me as i will never give up the fight...i was a RN n have a MPH n now hardly able to function on a daily basis...i feel like i am slowly dying everyday while losing my mind.

Hi Mar2a,
Although my symptoms are different than ours I wanted to reach out. My illness was caused by an test interferon, ribaviron, bocevivir experimental HepC treatment I underwent in 2007. It was a terribly toxic treatment and I finally dropped out of the study after 11 months. I was clear of the virus in 60 days and remain clear. However, I have been severely symptomatic (see above message) since June of 2014.

It is my understanding that "post interferon syndrome" is in the basket of disorders often designated as ME/CFS and fibromyalgia. I have treated my disease accordingly with mixed results. I suffer severe relapses after exceeding my limited exertional capacity. Because of the progressive nature of the illness and my increasingly weakening state, my relapses now last as long a 5-6 weeks. PEM or "Post Exertional Malaise" is the overriding, unifying diagnostic that all ME´s share. It sounds as though you too suffer from this. It is unfortunate that even some higher authorities in the medical profession still recommend exercise to treat our disease - the one thing that conclusively makes us sicker!

You have probably realized that there are very few doctors that have any understanding of disorders like ours. We have to be our own advocates which requires effort that few of us have the capacity for. Nevertheless, we carry on... combing the internet for new information, experimenting with supplements to support our compromised systems, trying out different pharmaceuticals to aid sleeping and mitigate our discomfort.

I support your efforts to better understand and treat your disease and am happy to share my experience if it can be at all helpful.

C.K

PS If you haven´t already discovered healthrising.org please take a look. Founder, Cort Johnson, does an amazing job keeping us current with developments in the ME Fibro world.

Lisa,
I do my best to keep my spirits up, even though i am in a very similar situation. I have a genuis IQ, which i never usually say, but saying it now because i can barely think straight half the time. I have terrible brain fog and memory problems. I was diagnosed with chronic fatigue syndrome and fibromyalgia, but also told these symptoms are a result of the interferon. Gastrointestinal problems and eyesight problems are also related to post interferon. I have been researching for years and would give anything to have not taken interferon. We are not alone. People all over the world are suffering similar long term side effects.
I cant undo what has already happened. All i can do is manage my symptoms as best i can and be grateful things are not even worse. No, it is not fair. Yes, there should be a lawsuit we could join. YES, they should be trying to figure out treatments to help those of us suffering years after treatment. Know that you are not alone. Ill keep you in my thoughts.
Krista

Lisa,
I do my best to keep my spirits up, even though i am in a very similar situation. I have a genuis IQ, which i never usually say, but saying it now because i can barely think straight half the time. I have terrible brain fog and memory problems. I was diagnosed with chronic fatigue syndrome and fibromyalgia, but also told these symptoms are a result of the interferon. Gastrointestinal problems and eyesight problems are also related to post interferon. I have been researching for years and would give anything to have not taken interferon. We are not alone. People all over the world are suffering similar long term side effects.
I cant undo what has already happened. All i can do is manage my symptoms as best i can and be grateful things are not even worse. No, it is not fair. Yes, there should be a lawsuit we could join. YES, they should be trying to figure out treatments to help those of us suffering years after treatment. Know that you are not alone. Ill keep you in my thoughts.
Krista

I just discovered this site. I did year long peg interferon, ribavirin in 2003. I have been sick every since. I have chronic fatigue syndrome. I cannot work anymore. Is there anything I can do?

I completed my treatment over 20 years ago. I also feel, like I’m dying and losing my mind. All these years and it’s still a daily struggle. And who do I talk to? The doctors don’t want to hear to hear about it. They will help with symptoms but that’s it. It sucks. If I had to do one thing over in my life I would die from hep c. I wouldn’t wish this on anyone. I don’t talk about it with anyone. Unless it’s happening to you I sound like a whiner. “ At least you’re cured!” F*%k you. Do you want to trade places?