Hey growly ! Wish I had found you guys years ago, really felt alone and drs treat me like I’m crazy “the depressed woman syndrome.” It’s insulting. I refuse to take antidepressants, they do make me feel crazy ! I’m just afraid of what’s next. The fibromyalgia and chemo brain are about all I can handle and attempt to function. Now that I know I’m not alone in this battle, am considering a legal consultation . What the hell, right ?? This feed alone screams Class Action. For now, let’s all keep on keepin on and be a source of support ✌️❤️
Liked by victimofinterferon
I'm defiantly interested, Any info would be much appreciated.
Thank you.
Liked by victimofinterferon
Not 15 minutes in a day that it doesn't cross my mind. But I can't. I have kids, adults but still they're mine. My dad checked out early on me when I was 11. I won't do the same. But I definitely know your pain. Someone has to be held accountable for this.
growly.
Liked by colino, victimofinterferon
I hope this will help in some way. Maybe if we started a community board to post things known, that will help with finding medical and legal help. I read that(pegalated) Interferon and. (Rebitrol) Ribivarin were taken off the market in 2016. The reason wasn't from the side effects they said. Also sherring plough was under investigation by the U.S. Justice dept . For possible Marketing violations concerning Interferon/Ribivarin. Apparently supposedly giving kickbacks to doctors who prescribed this stuff, in the form of family vacations etc. I'll do some more diggin and see if I can't find more info. But maybe if we all put what we know on a common board. Ya never know might just get somewhere. Also it would be a way to separate the fact from fiction. I'm willing to eat a little crow if it means we get somewhere.
growly.
Liked by victimofinterferon
Interferon, or ribavirin discussion. I think I was the first one to put this on the board for discussion. These drugs have affected so many of us in so many ways. These drugs are poison. I suggest complaining to the FDA. The difficulty of living with the aftermath is devastating.
Liked by victimofinterferon
Hi @growly, you'll notice that I removed your personal email address from your posts. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message function. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
Something I should have done years ago and will do now. The fact that so many of us now suffer from fibromyalgia should be looked at. I still would like to know why I have these occurrences of high fever, rigours and bone pain that mimic what I experienced hours after each interferon injection. It comes from nowhere and has happened for 12 years. I finished treatment 15 years ago.
My groin and underarms are fried Is there no way to be compensated for
being their guinea pig
Liked by victimofinterferon
I have the same problem. Sometimes I have to go to bed and feel like I have the flu
Liked by txnurse66, victimofinterferon
I was one of the first people to ever undergo treatment for hep c. I was given an incredible amount of interferon alpha two A although I have been told it must have been alpha 2 b, but I no longer have any paperwork so I don’t know. It was in 1995 and was an experimental treatment. I saw a specialist who wouldn’t allow me to tell him about the side effects I was having except for my top three. I would try to show him my list and notes about all the awful things I was going through but he was very firm. If you don’t like it you are welcome to quit but you will die. During that year I lost over 50lbs and was in so much pain and very weak. He told me my pain was fibromyalgia that would definitely go away when I was finished with treatment. He sent me to a rheumatologist for that who was one of the leading rheumatologists in the country when it comes to fibromyalgia. He told me that there was no hope that fibromyalgia would go away. He said there is no cure but doctors due their best to help control symptoms. All these years later I am not better and in fact the symptoms only get worse the older I get. I am looking for help because I have so many crazy symptoms that doctors don’t know what to do so I get shuffled from doctor to doctor with no real relief. My sister-in-law found this site and sent it to me with This is you! So now I am here to ask for help. Is there a doctor or a clinic that specializes in this syndrome? I would go anywhere to finally find some help
Barb
@growly
That's the same thing I've ran into. None of my Dr's even want to talk about interferon,or ribivarin. Or post interferon syndrome The minute I'd bring it up, they just ignore it,and move on. I don't even bring it up anymore,vary rarely. My eyesight also went. Post treatment. One day I could read just fine,the next I needed glass's. Thank you for sharing, I appreciate that I'm not the only one having trouble finding a doctor that will listen. growly.
Liked by victimofinterferon