Mayo Clinic Connect
What is known?
Liked by bt56, denisefinn
I went thru treatment with intron A in 95 and then again with ribavirin and peg interferon in 2010. I'm SVR now and clear but this year is the first year I've felt some (but not much) improvement of my brain fog, malaise, bone aches, joint aches, and everything else. I was tested for everything under the sun and was finally diagnosed with fibromyalgia and myofacial pain syndrome. I spoke with my gastroenterologist doc and my family doc about long term side effects. They said there was no evidence of any documented. I showed my gastro doc forum after forum of people who had my symptoms and said I'm not going crazy and how do I get someone to study this? I still dont feel like i did prior to treatment and have widespread pain. I often wonder if my symptoms are from fibromyalgia or from the interferon? There are so many hep forums where 50% of the people complain of long term problems that are all similar. Oh ya.. my eyesight is also shot now too. Happened rapidly the first 3 years after treatment. Just sayin. I hope we make enough noise to make a difference and get someone to HEAR us. Thanks!
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Hello I share the same health issues with you I have spoke to everyone in the medical field including the veterans administration gastrologist who prescribed the interferon ribavirin for five for 48 month treatments those treatments almost killed me I am sure now has been three years but it was the Havonia .i was on a pain maintenance management program through the VA for almost 15 years clinical diagnosis was degenerative disc disease lower back and after two cervical spine surgeries and clinical diagnosis of degenerative cervical spine disease as well
I was given 60 mg of Vicodin a day I didn’t have any pain in my body unless I fail to take my medicine on time
With all this new VA in opiate loss I was taken off I suffer today with pain but the feeling I’m having along with the other clinical issues is the body pain that is deep in my legs bones and in my arm bones I still have many headaches and I also have memory loss of some sort
I have asked the doctors for the medication back told them about the ribavirin and the interferon years of use no one has any evidence of long-term issues could it be people do know this I don’t want to add minutes maybe legal purposes I don’t know but I’m very very exhaust Feeling this way after reading your article I see you I’m not alone
I have many articles I could scan and send you about my research confirming that it fries your bone, but I do not have a computer right now. I'm very curious because you mentioned you were treated through the VA. You were to have intermittent bone density tests if you were treated for a year. Did they give those to you? Yes, my legs hurt terribly during that time when my bones were being fried. I remember her saying "well, it can't be from the medicine."
My legs never hurt previous to being treated, SO YES IT IS FROM THE MEDICINE. She was in a hurry that day to get off work so she could travel to Spain on our eventual early death, it is so hard to grasp someone being so greedy. I will also send you the scathing letter I sent her.
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
Why won’t lawyers touch this ? I know big pharma is corrupt but is it so corrupt that a treatment causes this much damage in all of our lives ?
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
I'm curious as to whether you were given intermittent bone density tests while on interferon and treated at the va. Was this a one year treatment?
Where were you treated? There is a statute of limitations in wa of 3 yrs. But….. I really can't see that statute applying to us because the harm is never ending with continuing harm. I have not given up on finding some kind of justice.
No one can possibly understand how awful we feel unless they went through the treatment too. Before treatment i always felt good uponwaking. I wake up now with my eyes stuck together, an earache that has lasted for over a man now. I was treated in 2008 forr a yr. My ear wax totally disappeared, it reappeared a few months ago along with this earache, pretty creepy. From the research i did the main damage done was to our brain. I am now regurtiatating burning hot liquid, i also have barnoff's esophagus, constant legpain, scabs all over my scalp, i lost pretty much all of my hair during those 12 months. I could go on and on. No one has even heard of sjogrens. I don't often get to see specialists because i never did end up going back to work and they know im a charity case so i dont get shit. If i died tonight i would not care, it would actually be a relief no more pain. Can't even get something for pain life is no longer worth living.
All about the money.
Frankly I would just like meds. That help.
But, government has made a political issue about opiates people are hat are suffering With chronic pain can’t get the maintenance they need
My body pain is awful it stops me from doing a lot in my day and live in alone makes it a little more difficult
The VA treated me again I had 5+ treatments of 48 weeks gastrologist are used has heard of all these things but the VA will not give us post treatment they don’t believe it either and again they’re not treating any veterans for pain anymore with the right medication they blackballed us all and sent us packing
Is Post Interferon Syndrome a diagnosis recognized by
The AMA? (Or whoever the watchdog org is)
Probably not, how do we find out? Is there a moderator on this site that can help with this please?
Honey I have no clue why no one will help us n it's just depressing
Hello my name is Terry and after finding this site I realize that I'm really not losing it well lemme correct that since my 46 weeks of shots and white horse pills in 2008 . I forget what it is I forgot, I stay in a state of depression , after 5 years clean from heroin use I relapsed and as a result I lost my girl, my job and a home.( I now reside in a tent in a park) basically waiting to die. Although I've worked and payed into SSDI since I've been 15 ( I'm now 50) I still can't get help. Now I know I'm not alone this site just may have saved a life today. Thank you and keep on keepin
Terry so sorry to hear that you are going through such a hard time , I contracted hepc through heroin use as well , I did the treatment back in 08 as well it completely destroyed my life lost my marriage as well so I understand the sense of loss you are in and going through , the thing is you are not alone as there are many of us here on this site who have been destroyed through the treatment but to know you aren't alone is a great comfort you can message me privately if you want.
Liked by ldestella
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
Liked by ldestella, baberuth13, mar2a
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