Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

@midnightbompers442

I agree I was treated in 2002 in pegiterferon rebvarin for 7 months the side effects were grueling and felt like I got hit by a Mack Truck within a month my eyes were effected blurred vision ( I never had eye problems prior to that ) I started to get muscle pain in hips and lowerback( was told by Dr it was Arthritus and Fibromyalgia that Al's ok contributed to my exhaustion Heck I was then only 52 very active prior my platelets got too low and was taken off of interferonan and told viral load was very low cured but the side effects continued and got worse now 20 years later I am recovering from Venous stasis ulcer from Venous Insufficiency Disease I developed spider and varicose veins while on Interferon treatment and now causing these ulcers on ankle Seeing Vascular Surgeon in a week to treat diseased veins and oh The Hepatitis C decided to come back But I have to say after others on hear have shared their stories I feel quite Blessed to not have more issues with my Health Thankyou everyone for sharing

Jump to this post

I could be the poster child of long-term after treatment side effects of the stuff. My journey began in 1999. Diagnosed A1 at 36. I started with alpha 2b and ribiviren 1 yr. Didn't work. 6 mos later did 6 mos of pegalated and ribiviren. Stopped due to not being effective. 6 mos later started Pegasus and ribiviren for 1 yr. 0 viral count until 3 mos later came back with a vengeance. The best thing about all was the psycho issues with pegalated, the blood count iv treatment with Pegasus, and being sick all the time with it all. And, that's on top of a full time job. In November of 2004,1 month after my last therapy I weighed in at 129 lbs. Average was 165. I felt like I was going to die. And none of it worked! 2016 did Harvony 12 weeks,no side effects! It worked! Still 0 count! 2011, Diagnosed with degenerative s1 and l5 lumbar. Not tissue, but bone and tissue. It's traveling around my body like it's on tour. I lost my teeth, hair, and eyesight. I am not able to get a lower plate, like I could afford it, because of a degenerative mandible. I am on disability now and my wife's family thinks that I am faking it! I wish. I'm 59 now and I am losing my hands and feet due to degenerative issues, and I'm losing my eyes as well as my mind. And it's more and more difficult to receive pain medication because of federal guidelines. I explained this with several doctors and they just stair, slack jaw,like I'm making it all up. Yet,they are the ones that are making all the diagnosis. Now I am dealing with brain fog, high blood pressure, increased degenerative issues with my back and, increasing eyesight loss.
Not trying to cause a fuss ,but my quality of life is for naught. If any one finds a lawyer or lawsuit, please, please contact me. Thank you for letting me vent. No one else cares.

REPLY
@degenerativeman1

I could be the poster child of long-term after treatment side effects of the stuff. My journey began in 1999. Diagnosed A1 at 36. I started with alpha 2b and ribiviren 1 yr. Didn't work. 6 mos later did 6 mos of pegalated and ribiviren. Stopped due to not being effective. 6 mos later started Pegasus and ribiviren for 1 yr. 0 viral count until 3 mos later came back with a vengeance. The best thing about all was the psycho issues with pegalated, the blood count iv treatment with Pegasus, and being sick all the time with it all. And, that's on top of a full time job. In November of 2004,1 month after my last therapy I weighed in at 129 lbs. Average was 165. I felt like I was going to die. And none of it worked! 2016 did Harvony 12 weeks,no side effects! It worked! Still 0 count! 2011, Diagnosed with degenerative s1 and l5 lumbar. Not tissue, but bone and tissue. It's traveling around my body like it's on tour. I lost my teeth, hair, and eyesight. I am not able to get a lower plate, like I could afford it, because of a degenerative mandible. I am on disability now and my wife's family thinks that I am faking it! I wish. I'm 59 now and I am losing my hands and feet due to degenerative issues, and I'm losing my eyes as well as my mind. And it's more and more difficult to receive pain medication because of federal guidelines. I explained this with several doctors and they just stair, slack jaw,like I'm making it all up. Yet,they are the ones that are making all the diagnosis. Now I am dealing with brain fog, high blood pressure, increased degenerative issues with my back and, increasing eyesight loss.
Not trying to cause a fuss ,but my quality of life is for naught. If any one finds a lawyer or lawsuit, please, please contact me. Thank you for letting me vent. No one else cares.

Jump to this post

The vision loss combined with other stuff you mentioned is consistent with MS. I always thought it was inherited but it's not so I never looked at it but it's actually stimulated most often by viral infections. Some blood tests I'm requesting are to better monitor my b12 and vit d because decreased levels can be indicative, EBV antibodies to see if theres been a previous exposure of the virus correlated the most with MS and or to see if it's still in the system, Human Herpes 6 antibodies, and the gene HLA DRB1 *1501

Dunno if this helps at all but I think we all know no one else is gonna figure it out for us.

A MS diagnosis could help them better handle the acute issues as they come up.

Post interferon syndrome isn't a diagnosis on its own because there's no roadmap for it. It really just means you suffered viral and chemical exposure that opened the door to encephalitis which depending on if u had this other virus dormant in ya can be stimulated into relapse which would cause the same symptoms experienced thru all the other exposures.

I don't know how much sense I'm making.

Much love to you and I pray u find relief and real SUPPORT

REPLY
@degenerativeman1

I could be the poster child of long-term after treatment side effects of the stuff. My journey began in 1999. Diagnosed A1 at 36. I started with alpha 2b and ribiviren 1 yr. Didn't work. 6 mos later did 6 mos of pegalated and ribiviren. Stopped due to not being effective. 6 mos later started Pegasus and ribiviren for 1 yr. 0 viral count until 3 mos later came back with a vengeance. The best thing about all was the psycho issues with pegalated, the blood count iv treatment with Pegasus, and being sick all the time with it all. And, that's on top of a full time job. In November of 2004,1 month after my last therapy I weighed in at 129 lbs. Average was 165. I felt like I was going to die. And none of it worked! 2016 did Harvony 12 weeks,no side effects! It worked! Still 0 count! 2011, Diagnosed with degenerative s1 and l5 lumbar. Not tissue, but bone and tissue. It's traveling around my body like it's on tour. I lost my teeth, hair, and eyesight. I am not able to get a lower plate, like I could afford it, because of a degenerative mandible. I am on disability now and my wife's family thinks that I am faking it! I wish. I'm 59 now and I am losing my hands and feet due to degenerative issues, and I'm losing my eyes as well as my mind. And it's more and more difficult to receive pain medication because of federal guidelines. I explained this with several doctors and they just stair, slack jaw,like I'm making it all up. Yet,they are the ones that are making all the diagnosis. Now I am dealing with brain fog, high blood pressure, increased degenerative issues with my back and, increasing eyesight loss.
Not trying to cause a fuss ,but my quality of life is for naught. If any one finds a lawyer or lawsuit, please, please contact me. Thank you for letting me vent. No one else cares.

Jump to this post

I surely will there must be others that had suffered chronic side effects God's speed to You

REPLY

Hello everyone! So sorry it’s been so long since I’ve been on here, but, as most of us, interferon is beating me up…bad! Found out that I now don’t make collagen (matrix for bones) via a bone marrow biopsy!

I AM CURRENTLY WORKING WITH SOMEONE IN CALIFORNIA WHOM HAS PUT TOGETHER A PROPOSAL FOR A CLASS ACTION SUIT AGAINST THE MAKERA OF INTERFERON! I need for everyone affected to pls contact my personal email:LCOFFEY38@YAHOO.COM

REPLY
@degenerativeman1

I could be the poster child of long-term after treatment side effects of the stuff. My journey began in 1999. Diagnosed A1 at 36. I started with alpha 2b and ribiviren 1 yr. Didn't work. 6 mos later did 6 mos of pegalated and ribiviren. Stopped due to not being effective. 6 mos later started Pegasus and ribiviren for 1 yr. 0 viral count until 3 mos later came back with a vengeance. The best thing about all was the psycho issues with pegalated, the blood count iv treatment with Pegasus, and being sick all the time with it all. And, that's on top of a full time job. In November of 2004,1 month after my last therapy I weighed in at 129 lbs. Average was 165. I felt like I was going to die. And none of it worked! 2016 did Harvony 12 weeks,no side effects! It worked! Still 0 count! 2011, Diagnosed with degenerative s1 and l5 lumbar. Not tissue, but bone and tissue. It's traveling around my body like it's on tour. I lost my teeth, hair, and eyesight. I am not able to get a lower plate, like I could afford it, because of a degenerative mandible. I am on disability now and my wife's family thinks that I am faking it! I wish. I'm 59 now and I am losing my hands and feet due to degenerative issues, and I'm losing my eyes as well as my mind. And it's more and more difficult to receive pain medication because of federal guidelines. I explained this with several doctors and they just stair, slack jaw,like I'm making it all up. Yet,they are the ones that are making all the diagnosis. Now I am dealing with brain fog, high blood pressure, increased degenerative issues with my back and, increasing eyesight loss.
Not trying to cause a fuss ,but my quality of life is for naught. If any one finds a lawyer or lawsuit, please, please contact me. Thank you for letting me vent. No one else cares.

Jump to this post

Pls contact me at:Lcoffey38@yahoo.com

We r working on a proposal for a class action!

Lisa A DeStella

REPLY
@midnightbompers442

I surely will there must be others that had suffered chronic side effects God's speed to You

Jump to this post

Pls contact me at : Lcoffey38@yahoo.com
We r working on a proposal for a class action

Lisa A DeStella

REPLY
@robbyd

The interpheron caused my compromised immune system and I wanted to get vaccinated as quick as possible. I had my first vaccine shot in January. Second shot in Febuary and just got my booster shot under Doctors recommendation. So far I am doing fine with the vaccines. Hope this helps

Jump to this post

Hello-
Interest therapy caused my immune system to just basically quit! I have been diagnosed with Common variable immuno deficiency (cvid) I have a port in my chest n have to get infusions of antibodies for life. I’ve been on 136 antibiotics in 6 yrs
I AM WORKING WITH A GAL WHOM IS PUTTING TOGETHER A CLASS ACTION LAW SUIT. Pls private message me.

REPLY
@lhowell

I'm writing for the first time on this site. I'm beginning to wonder if my husband may be suffering from post-interferon/ribavirin dementia? He was diagnosed with dementia at age 57. He is now on disability and I'm caring for him.

He completed a course of interferon/ribavirin in approximately 2004 for hepatitis C. He was on that treatment for 6-9 months. He had all the side effects of the treatment like depression, brain fog, flu-like symptoms, etc. After he got off the treatment most things seemed to fade, but I noticed things had changed in his demeanor. He was often more depressed and irritable that he had been before. At the time of his treatment he was a financial manager for a car dealership. After treatment he really struggled with his job. In 2007/2008 he had 9 different jobs. He saw the doctor and had a head CT and nothing was out of the ordinary (no masses/lesions). We finally got him in to see a neurologist in approximately 2012? who did the mini-mental exam in the office. My husband didn't do well at all on the test, but the doctor (who was awful) didn't give any reason for my husband's cognition issues. He suggested a follow-up in a year. We finally found a different neurologist a couple of years later and he was seen again and this neurologist suggested a neuropsychologic exam. It took several months to get him in to be seen. He finally had that exam in early 2017. It was a very detailed report, but in the end he was found to have a neurocognitive disorder. My husband had to quit trying for jobs in the car business and just drove for Uber after that. In 2019 he had a followup neuropsych exam. At that time there was severe decline and was found to have dementia. He received SSDI after that.

There has never been any reason given for this. No family history. I've looked for reasons to explain this for years, when I ran across an article about post-interferon/ribavirin treatment syndrome. Is this a possibility with my husband? It's seems very likely to me..

Jump to this post

We’re working on a class action…Lords will, pls private message me

REPLY
@ldestella

Hello-
Interest therapy caused my immune system to just basically quit! I have been diagnosed with Common variable immuno deficiency (cvid) I have a port in my chest n have to get infusions of antibodies for life. I’ve been on 136 antibiotics in 6 yrs
I AM WORKING WITH A GAL WHOM IS PUTTING TOGETHER A CLASS ACTION LAW SUIT. Pls private message me.

Jump to this post

@ldestella Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

REPLY

Hi guys looks like this thread may be a bit old , but I’m hopeful it gets active again . I live in new Zealand and had interferon 24 years ago ! It worked and I don’t have hep c .. but ever since then I have never been well , I’ve had so many hospital visits, where they say there’s nothing wrong , I get so fatigued and it’s getting worse! Gastritis problems.. the list goes on . Has anyone had any success with treating the aftermath
Lucelle

REPLY
Please sign in or register to post a reply.