Mayo Clinic Connect
What is known?
Liked by bt56
Hi!!! please review this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3394469/ there are many more articles saying this exact same thing. we are not nuts. i have tried several lawyers but no one will touch it!!! PLEASE EVERYONE…THERE IS A FDA WEBSITE WHERE U CAN TURN THESE DRUGS IN. I DID MONDAY. THIS WOULD BE ONE WAY TO GET NOTICED. Everyday is a battle for me to even get thru a day. my immune system is GONE…i have CVID from these treatments. I HAVE TO HAVE INFUSIONS THE REST OF MY LIFE. I am just starting my 35th antibiotics in 2 yrs. I have Sjogren's syndrome (autoimmune), bad stomach probs, massive pain in my joints, and the fatigue is overwhelming. I am a RN and also have a master's public health. can't work or even function hardly. i went to my grocery store that i go to at least 3x week and got lost inside, got more confused than usual. we need help so so bad
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The medical community and Government need to take responsibility for sweeping this problem of Hep C under the rug! The military wont even admit they caused and spread Hep C with Jet gun inoculations both thru the military and world health Organization?? Now they want us to believe people are cured with their drugs…its not true!!! The Veterans Administration are lying… need proof just write me and I will mail to you…
Liked by ldestella
Hi, Thank you so very much. So how are you dealing with the side effects?
one day at a time
This board is quiet. Is everyone better? I’m not.
Where did you go. No one else even thinks this is thing. I like to know I’m not the only one. I’m on three antidepressants and everything still sucks. The rest of the world has happy endings to their depression stories. “I was so depressed, for so long, and then I got better”. And this to shall pass. But what if it doesn’t. Interferon permanently changed me for the bad. It never gets better.
Liked by growly
I hear you. I feel your pain.
In 2009 -2009 I participated in a 2nd Stage testing of a 12-month HepC drug therapy using interferon, ribavirin and Boceprevir, a protease inhibitor being developed by Schering Plough. It was a terrible drug cocktail and I suffered painful rashes, flu-like
symptoms, insomnia and anemia. After 9 months I could no longer care for myself and had to quit the study before completion in the 11th month. The HepC virus was non-detectable within 3-4 months of starting the drug therapy and has remained so. Unfortunately, I didn’t fully recover from the therapy. I suffered from anemia, low white blood cell count, insomnia, depression and suicidal ideation. I was soon after diagnosed as bi-polar and treated successfully with lamictal (lamotrigine) 25 mg.
Although I was able to manage a normally paced life-style for the next 3 years I began to suffer from strange, periodic 1-2 month bouts of flu-like symptoms. Similarly, I suffered severe reaction to oral surgery in 2014 but this time never never recovered. I was consequently diagnosed with ME/CFS. My symptoms included the following:
1. Fatigue made worse by exercise
2. Flu-like malaise, feeling “sick all over”
3. Insomnia and non-restful sleep
4. Severe migraine headaches (after accumulative exertion)
5. Tinnitus (nearly constant)
6. Swollen lymph nodes in neck (daily)
7. Heart murmur, palpitations
8. Cognitive function problems
9. Brain fog
10. Difficulty understanding speech (occasional)
11. Attention deficit disorder
12. Memory loss – especially short term memory
14. Mood swings
15. Excessive irritability
16. Decreased libido
17. Nightmares (frequent)
18. Balance problems
19. Tightening of the muscles of the sole of my feet (usually at bedtime)
20. Swelling of hands and feet
21. Restless leg syndrome (infrequent)
22. Sensitivity to light and loud noises
23. Alcohol intolerance
24. Dry eyes and mouth
25. Temperature and weather sensitivity
Over the last 4 years I have traveled the world (I reside in Southeast Asia) searching out advice and receiving medical care from specialists including Dr. Stewart (Austin , TX), Dr. De Meirleir (Brussels, Belgium) and Dr. Jose Montoya (Stanford University, CA) as well as numerous authorities that I accessed online including Dr. Rawls at Vital Plan. Over this time and through great effort of experimentation I have cobbled together a self-prescribed treatment plan that has reduced the adverse effects of my condition and vastly improved my quality of life.
It was only recently that I received any feedback from ANY specialist that corroborated my conviction that my ME was caused by the interferon/ bocefivir therapy. My local endocrinologist confirmed that tests had recently been completed confirming averse effects on a percentage of interferon survivors. (I was unable to access any of these tests)
I stumbled on this Mayo chat only recently and was saddened to witness so much suffering. I too share the anger and often suffer from the despair that comes from the terrible isolation of this unrecognized and often maligned condition. Few of my friends and family have any real notion of the suffering I have endured and the pains to which I must go to manage my symptoms.
Obviously I´m not qualified to recommend treatment strategies. I have witnessed so many variations of adverse effects of the interferon and I´m convinced that there is no "one size fits all" approach to treating the illness. However, because of the apparent unwillingness of the medical profession to properly address post interferon syndrome, specifically, and ME/CFS, in general, I feel we must do what what we can to help each other develop the skills of self-advocacy to carry on. In that spirit, I hope to see the thread of shared anger and pain become a source of information and positive action and offer my experience.
Don´t give up.
Liked by Colleen Young, Connect Director, growly
Thank you. The doctors say the main thing is to start getting better now. The cause of your depression is secondary to your getting better. It’s not secondary to me. Also, “ Oh, I don’t know,what you’re talking about, but that was so long ago. Can’t you just get over it.” No I can’t just get over it. Time doesn’t help. I always feel like I stopped treatment yesterday even though it’s been 20 years. I can eat, I don’t have flulike symptoms anymore and with medication I can sleep, but the bad thoughts are constant. The few people I mention it to say “Everyone has days like that”. No they don’t. Thoughts of suicide plays like a loop. Over and over. Sometimes for days. I look at at some stuff on line and the questions are like “ How many times have you thought of suicide in the past week, once, twice? Or more. How about 1,000? It’s ongoing, it never stops. The medication allows me to function, but that’s about it.
Hear “Just be glad your cured”. No. I’m not. Interferon is the gift that keeps giving. Anyway, I don’t talk about it anymore, to anyone.
My question is to the mayo clinic is there anything that can be done for the people here on this site feel this way we’re all we doing here is talking I realize talking is great end it helps understanding that there are other people with the same health issues but it comes a time when action is needed
Hi @marko1, @sueleerock and all,
Mayo Clinic recognizes that many treatment regimens for treating Hep C contain drugs with side effects that affect your quality of life. "Many people who start treatment for chronic hepatitis C don't make it through the entire course of therapy because of side effects. New antiviral drugs are replacing hard-to-tolerate medications — peginterferon alfa and ribavirin — that were, until recently, the backbone of hepatitis C treatment. Even so, peginterferon alfa and ribavirin are likely to remain in use in parts of the world with limited medical resources.
The new anti-hepatitis C drugs also have unpleasant side effects, including flu-like symptoms similar to those affecting most people on peginterferon alfa and ribavirin. These side effects typically aren't severe enough to lead to stopping treatment, but they may erode quality of life. Fortunately, you can take steps to reduce the impact of hepatitis C treatment side effects. Here are some tips for managing the most common ones." Read the full article
– Coping with side effects of hepatitis C drugs https://www.mayoclinic.org/diseases-conditions/hepatitis-c/in-depth/hepatitis-c-drug-side-effects/art-20121674
I'm fairly confident that many of you have tried these coping tips. Connect is an online community where people can share experiences and ask each other questions and learn together. What helps you cope with the debilitating side effects of drugs that are meant to treat?
Marko’s Post was in March. You pick the one post from the entire year that you have a reply to? Your post sounds like a newsletter article an outside vender wrote. Read the more current post and reply from your heart, not a script, even if you got nothing at least it would honest.
@colino, You're right. My post does sound like a newsletter. That's because I was quoting information from an article. Note the quotation marks and link to the article included. It was my intention to share evidence-based information, not to sound heartless.
A couple of members were asking about the purpose of Connect. Thus I want to underline that it is an online community where people share experiences and ask each other questions and learn together. For those who wish to advocate for action from the government, there may be better suited forums. Any suggestions?
Colin, I am miserable too. The suffering is unbearable. I took peg interferon from 2002-2003 for the 48 weeks. I have major depression and anxiety that has dominated my life for 17 years. I would take the virus back any day instead of this awful life I endure. I cry everytime I hear someone's story because doctors, psychiatrists, specialists, friends, family etc. tend to think it's all in my head. Then I see my own thoughts in other people's words. How could they have allowed such a toxic drug to be given to any living being? I wouldn't wish this medicine on a serial killer.
I find it absolutely crazy that NONE of my doctors know anything about this or there hasn’t been enough studies done on it. 18 year’s ago I was involved in a study for Hep C drugs. 18 years ago I was 20 years old & had the liver of a 65 year old alcoholic so this study was a miracle for me to find & then be included in. I did so many different medications over the course of 2 years, I can’t even tell you what all I took. What I can tell you is that, 18 yrs later I get lost driving to my mothers house or taking my kids somewhere we’ve been multiple times. I can’t remember much & forget a lot more than I should, on a daily basis. I’ve been a stay at home mom for 14 yrs, which was an easy way to “hide” everything…plus “mommy brain” has always been a huge excuse. Then I was given Adderall & I did so good, it was a different world, but only for about 3 years. Now my dr won’t increase my dose & I’m stuck “all over the place.” Besides the fog & memory issues, math has become increasingly hard. My body aches, my joints hurt, my hair has turned 98% grey & I can’t lose weight to save my life! I feel so much older than 37. I wish there was more information on the long term effects of interferon on your brain/ body. I am convinced it’s what has destroyed me. I’ve cleared the virus for over 15 yrs now but the way I feel on a daily basis has me questioning if it was worth it.
Thought you might like to know that I had interferon more or less foisted on me in 2005. Unlike you, I didnt have any signs of hepatitis at all but was (accidentally) discovered to be HCV+. I have never had symptoms of hepatitis, have a good healthy liver in fact. Even so, I have exactly the symptoms you describe, plus a few more.
I thought you might like a second opinion that it was the interferon did this, not your liver. Considering the interferon treatment was known to be ineffective there is no way the balance of risks excuses the way it was foisted on everyone. I was told I would have liver cancer within 2 years if I didnt consent. An absolute load of cobblers in my case.
Anyway best of luck. Let someone else do the cooking.
Still searching for answers 13 years post treatment. Began first interferon/Ribavirin 1999, there was Intron A. Then pegylated with Ribavirin for one full year ending 2006. So 7 years on and off. I have been diagnosed with fibromyalgia, but approved meds don’t help the pain. I could literally stay in bed all day everyday. 9 months after end of treatment I began having these bizarre episodes of acute onset high fever, bone breaking pain, rigours, and vice gripping headache. All very similar to reaction after interferon injection. Been to many drs, they have no answer. Happened again last night (symptoms hit like a train and gone in 12 hours). Never know when it’s coming, but 13 years post treatment? Anyone else have similar or answers ? Thanks
I also want to add that its ironic that a large amount of people post interferon all seem to be getting a Fibro diagnosis. Isn't that odd?
I ended treatment 2006 and after continuous all over joint and body pain, I went to a rheumatologist. My primary care thought I was drug seeking. Rheumo disgnosed with fibromyalgia and he was first one to mention Post Interferon Syndrome. Why didn’t our prescribing drs tell us what we were getting into ? I had to read about “chemo brain” in the newspaper!!
Agreed. Nice to see some activity. For those of us with severe reactions time doesn’t heal all wounds, if anything it gets worse. So I just don’t talk about it. When I get a really bad couple of days in a row I try to avoid people as much as possible. Sometimes my wife picks up on it and asks what’s going on. I can’t explain it, my brain just goes bad, or worse than usual, everything is black.She tries to help, “look hw much you have to grateful. She’s right, but it doesn’t work that way. My son is handicapped, he doesn’t talk, ask questions or judge. We spend a lot of time walking around and I can relax. That helps a little.
I haven't been on here in quit awhile. I have to say, It pains me to see all the new activity. On the other hand, it gives me great encouragment that so many are coming forward. We've all been dupped, to put it mildly. Guinea pigs to the pharmaceutical companies. It truly breaks my heart when I read all the long term side effect sufferers tell their story. We're all the same. And like many I've read. If I'd have known then,what I know now. I never would have taken the Interferon or the Rebitrol.I was on the alfa2b treatment 6 mos. It blew my candle out. I just exist now. Nothing more. Hopefully to someone, somehow, this site will be of use to them. Thanks for listening, "Reading" I appreciate ya. growly
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