Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

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@jenglereckedbin

Dear Idstella. I take inspiration from you and admire your strength and courage. Here in the UK I have not yet found any campaign or organisation challenging the Merck company that manufactured the Interferon. Have I got that correct? I will need as much info as possible to bring this subject forward. In April there is a very big enquiry begining in London about the NHS Contaminated Blood scandal in which thousands of people became infected with Hep C and HIV via blood transfusions and blood products and hundreds of people have died. Many people are waiting for liver transplants and many others are fighting HIV and cancer. I will be contributing to this enquiry with my story. Wouldn't it be wonderful if an enquiry could be made about the Interferon Drug? At present I do not feel there is enough evidence to present a case except for research off the internet and this website. However I do belong to a group about NHS Contaminated Blood in which most members have similar stories regarding Hep C and post treatment so I feel this maybe a good starting point ? What do you think ? X

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Hello!! well thank u for ur confidence lol if u can PM me, I will help u put together a powerpoint to present. I read about the contaminated blood n that is terrible. I will just start sending all that i have acquired n will set up a prof journal for u!! this has to be put out there in the UK as I will get it out here...i have many ideas n will get to work on this asap!! xo

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@jenglereckedbin

Dear Idstella. I take inspiration from you and admire your strength and courage. Here in the UK I have not yet found any campaign or organisation challenging the Merck company that manufactured the Interferon. Have I got that correct? I will need as much info as possible to bring this subject forward. In April there is a very big enquiry begining in London about the NHS Contaminated Blood scandal in which thousands of people became infected with Hep C and HIV via blood transfusions and blood products and hundreds of people have died. Many people are waiting for liver transplants and many others are fighting HIV and cancer. I will be contributing to this enquiry with my story. Wouldn't it be wonderful if an enquiry could be made about the Interferon Drug? At present I do not feel there is enough evidence to present a case except for research off the internet and this website. However I do belong to a group about NHS Contaminated Blood in which most members have similar stories regarding Hep C and post treatment so I feel this maybe a good starting point ? What do you think ? X

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yes!! excellent starting point

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@ldestella

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

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Hi Lisa, I too was treated for one yr. and now have sjorgren's and
many other weird illnesses. I actually could make a very long list. I also know that, after much research, we should be always followed for any signs of lymphoma. From my research, I know that the doctor I saw in Seattle did not follow ANY of the protocols a physician was supposed to follow to safeguard her patients against the deadly side effects of this deadly combo. I also know that for every prescription written she received $10,000!!!!
That a physician could still be treating patients is appalling to me to say the least. There is so much I'd like to say, but I am typing on my cell phone. I would love to connect with others who went through one yr. of treatment withthe highest dose as I did. I'd also like to file a lawsuit against the doctor and nurse who treated me for not following protocols in place. They SHOULD NOT BE ALLOWED TO BE IN A POSITION "caring for others." It was all a about money.

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Because of how sick I am now, and the fact that the doctor treating me took kickbacks of thousands of dollars, and totally disregarded my health and safety; I want to see about filing a lawsuit. I am looking for others treated in Seattle by Alexander Read and Anne Croghan, who treated for one year with the highest dose. Please contact me. They need to be held accountable for what they did. We need to do something no matter how sick we are, if we cannot file a lawsuit, then we can picket the offices where they work, with their names splashed across billboards. I cannot do it alone. I am looking for others.

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@sueleerock

Hi Lisa, I too was treated for one yr. and now have sjorgren's and
many other weird illnesses. I actually could make a very long list. I also know that, after much research, we should be always followed for any signs of lymphoma. From my research, I know that the doctor I saw in Seattle did not follow ANY of the protocols a physician was supposed to follow to safeguard her patients against the deadly side effects of this deadly combo. I also know that for every prescription written she received $10,000!!!!
That a physician could still be treating patients is appalling to me to say the least. There is so much I'd like to say, but I am typing on my cell phone. I would love to connect with others who went through one yr. of treatment withthe highest dose as I did. I'd also like to file a lawsuit against the doctor and nurse who treated me for not following protocols in place. They SHOULD NOT BE ALLOWED TO BE IN A POSITION "caring for others." It was all a about money.

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Hi Sue!!! oh my gosh that is just terrible. Most of us on this site on going thru most of the same things...yes, this really does suck. If u would like to PM me, we can talk further PLS!!!! xo

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This is my first cell phone and it sucks. What does PM mean LOL. My sons r always teasing me and tell me I don't know what i'm doing. I need a computer to enable me to message easier. This one finger thing sucks!!! So kind of u to message back. I am very very angry about what has happened to ALL of us. I'd rather talk by phone. Hopefully, I can get a computer soon, I cannot do this one finger thing.

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@sueleerock

This is my first cell phone and it sucks. What does PM mean LOL. My sons r always teasing me and tell me I don't know what i'm doing. I need a computer to enable me to message easier. This one finger thing sucks!!! So kind of u to message back. I am very very angry about what has happened to ALL of us. I'd rather talk by phone. Hopefully, I can get a computer soon, I cannot do this one finger thing.

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lol no worries...highlight my name n it should take u to private message, if not let me know lolol

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I went thru interferon ribivirian and incevick in 2011/2012 I wound up in a mental institution lost my mind was taken off the meds and sent home where I went into a year long clinical depression. The interfeone changed my life forever. I thought I could manage the mental diagnoses after interferon. However, now into my 9th year post I have suffered with chronic fatigue sent from one speaciliest to another they say its sleep apnea nope that's treated still exhausted . They say high blood sugars nope that's treated still exhausted barley able to function at work. The say I'm not disabled well there is something wrong I M not the carefree wild girl that went into interferon. All of my dreams were smashed and I have suffered every day of the last 9 years . I had no idea others felt this way as well

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@casassy

I went thru interferon ribivirian and incevick in 2011/2012 I wound up in a mental institution lost my mind was taken off the meds and sent home where I went into a year long clinical depression. The interfeone changed my life forever. I thought I could manage the mental diagnoses after interferon. However, now into my 9th year post I have suffered with chronic fatigue sent from one speaciliest to another they say its sleep apnea nope that's treated still exhausted . They say high blood sugars nope that's treated still exhausted barley able to function at work. The say I'm not disabled well there is something wrong I M not the carefree wild girl that went into interferon. All of my dreams were smashed and I have suffered every day of the last 9 years . I had no idea others felt this way as well

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Hi!! welcome to our hell lol there are a lot of us who figured out it was the interferon/ribaviron...took me 8 yrs. I too took the treatments in 2011 but not the incevick. glad ur here now!! pls feel free to ask us anything or PM me, my name is lisa

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I am just now figuring out that I have long term side effects it's insane now looking back at how intense my suffering has been.

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