Mayo Clinic Connect
What is known?
Liked by bt56
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.
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.
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Thank you so much for the validation. What kind of doctor diagnosed you? My general practitioner never mentioned it, my hepatologist isn't in the picture since I was cleared, and the doctors addressing my pain just say I need more exercise 🙁
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.
I read these posts and I cry. I’m not alone
Liked by ldestella
I am all for a lawsuit. There has been a major shift psychiatrically on some hardcore psychiatric meds since treatment in 2007. If there is any info regarding this contact me
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?
There are many ways to mitigate the suffering we are experiencing however, to my knowledge, there is no cure. Have you found a general practitioner who is sympathetic to your condition, knowledgable about ME/CFS? I have consulted with numerous specialists around the world and I can assure you that not one of them was able to give me the specific attention required to best treat me! I have had to piece together my own treatment and life style plan, taking from each of them what best worked for me. The basis of my approach is to support my metabolism, reduce the effects of PEM (post exertional malaise) and aid my sleep. I have relied on Dr. Rawls´s Vial Plan supplements and have been taking them for the last three years. I recommend you check out his book. I believe it can be downloaded for free. Lyme disease causes very similar symptoms as ME/CFS. I also found that antiviral medication has been helpful. I use various pharmaceuticals to aid my sleep. Tricky business! Klonipin is very addictive and Ibuprofen PM is terrible for the liver. Neither works if used exclusively over a long period of time. I alternate with other pharmaceuticals so not to become reliant on one.
Please read my earlier posts. You might find something there to assist you.I am happy to help to on your path to a better life. In any case, please know that you are not alone.
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?
Whom r u talking to??? n why would u be cussing??
Hi!!! I I have cfs and fibro also. i can not work or on most days hardly do anything or i will crash…no energy n have to rest most of the day. this is horrible to live this way. i so glad u found this site…it give us a little validation that we r not nuts
Yes the validation helps!!! Is there anything we can do to help our situation?
Thank you so much for sharing all of the things you have tried and do to make this better. I will read more about the things you have tried and look at your past posts. Thank you so much, it helps to feel not so alone in this puzzle.
Hi, I am 7 yrs post INTERFERON/RIBAVIRON tx and my life is ruined! My memory is so bad now I have no idea why I walked into a room or where I parked at store. I was a thriving RN/MPH and now I have CVID from the tx's. I am in so much pain all of the time it's hard to function. My personality has changed, I now have an autoimmune dx called sjogrens syndrome…life is hell for me anymore. PLs let me know how u r doing n if u r going thru all of this…thx lisa
I did a year of treatment in 2008. I have had numerous side effects the worse one being the treatment damaged my bones, it is painful even to walk, my knees are now cracking which is a symptom I need to see a doctor for. I have proof, from my research, that the treatment does massive damage to your bones. Does anyone else have this symptom? It is awful to not have pain relief because of the opiate crisis.
Hi everyone, I was in a car wreck in 1974 and received 6 liters of blood and was infected with Hep C. In 2007 I started the interferon and ribivirian treats. The treatments have effected my auto immune system. I no longer grow any hair and my rehemutlogist say I now have lupus caused by the drugs. I have a horrible memory and feel confused a lot. Many days I feel like it's the second day after the shot. Operating at about 40%.
I was happy to find this site and know I'm not crazy. Just t ting to deal with the symptoms
I believe it is from treatment. There are too many cases of people with similar symptoms that have lasted a long time after treatment has been finished. I have been doing research on others out here. There is no way that I'm the only one that still has lingering effects 8yrs later. Sure enough, there are several of us!
I to have been dealing with this for 8 yrs and the sad thing is, the doctors are covering for each other. The pharmacist industry is a very filthy rich business. The government doesn't care what happens to the people. FDA is the biggest joke, there is. NO help for us victims. I can't even get proper diagnosis. My feet flair up, making it Impossible to walk and I have been living on government assistance and can't even get disability for my problems. I don't care about a government, that doesn't care about us. I to, wish I was dead.
I would get a different doctor until you can get the help you need for a proper diagnosis..the system doesn't partner us well…so you have to fight to get the help you need…hang in there..we all deserve to be treated with dignity, not dismissed…
Hi, I am new to this discussion. I actually just discovered by accident yesterday that other people questioned whether the interferon/ribavirin treatment left them with long-term side effects or total physiological changes in the body. I had the 6 month treatment in 2014-2015. I had been in pain in my upper right abdomen daily for 2 years, going to the hospital here, even telling them I was a recovering addict with Hep c and asked if it could be the problem. Told no way..I had only been infected about 7 years at the time and was told not long enough to do any damage. Finally I went back to my family doctor and was sent to the liver specialist here…and I had stage 3 grade 2 liver disease and needed immediate treatment. At that time the new treatment was in the works but was still at least 2 years from being in Canada and the specialist felt I did not have the time to wait. So I did the interferon and ribavirin for 6 months…It was horrible to say the least. I was off work for 8 months and returning to work was really hard for a long time. But it is years later and I still am constantly tired, brain fog, vision loss began shortly after and has continued to worsen. I had perfect vision prior to…god, I could go on and on!!! I can't explain how relieved I am to see I am not alone and not crazy!
Hi, my name is Deidre, I am new to this site but when I read what you said to Lisa it really hit home. I have all the same issues, chronic fatigue, vision issues, stomach issues, memory problems and now I am having balance issues and dropping things all the time. I have asked repeatedly (my doctor) if it could be the treatment and he says no, doubt it. He is a great doctor, has been wonderful to me but I live in PEI, Canada where not much happens, especially not research on medications. I have already said but I will say it again..the relief I feel seeing that I am not crazy is overwhelming. Thanks, Deidre
My vision used to be great, it isn't good no more, I to have brain fog, I get up to do something and I forget what I was going to do. I'm tired all the time. My feet flair up and swell up and are in great pain, don't know if it's gout or what. I found out, that in Tennessee, there were doctors, who were purposely taking government payouts, to make sure people we're not being diagnosed with there problems, to make sure that they don't get disability check's. My dad, Vietnam vet, grandfather and great-grandfather was WW2 veterans and I enlisted during Desert Storm. It's our politicians who are not patriotic, they are back stabbing traitors, who only care about making money.
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