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.

@ladylilith121

Is this your number to contact u

Jump to this post

Yes

REPLY
@rlxdlr

I have Chronic EBV and apparently Autonomic Dysfunction as well. My life is all but over it seems. Funny thing...I don't look sick 🙁

Jump to this post

No lie I'm in the same boat I'm sick every day I just don't look sick the treatments have destroyed my health

REPLY
@ladylilith121

No lie I'm in the same boat I'm sick every day I just don't look sick the treatments have destroyed my health

Jump to this post

I have another appt with a neurologist in May 25 if you can believe that. I work with a great Osteopathic DR who is always pushing me to alternative treatments. i will probably do some IV treatments here shortly. I need a good day. Myers Cocktail is one and massive Vit C IV tx. She has also recommended Ozone I can't get my head around it yet. I have been fkn around with this for 8 years slowly getting worse.

REPLY
@rlxdlr

I have another appt with a neurologist in May 25 if you can believe that. I work with a great Osteopathic DR who is always pushing me to alternative treatments. i will probably do some IV treatments here shortly. I need a good day. Myers Cocktail is one and massive Vit C IV tx. She has also recommended Ozone I can't get my head around it yet. I have been fkn around with this for 8 years slowly getting worse.

Jump to this post

I can imagine every since I got sick it's been the gastrologist then neurologist physical therapist a rheumatologist so I completely understand how u feel and my fibromyalgia is so severe it's debilitating me

REPLY
@ladylilith121

Is this your number to contact u

Jump to this post

Just a friendly reminder. You really should private message any personal contact information so you keep your privacy.

REPLY

I went through Interferon and Ribavirin treatment 23 years ago. It made me sicker than hell but, I toughed it out. Upon finishing, I told my Gastroenterologist that something is not right. My head was in a fog. I suffered from pain everywhere, I just ache. Perpetual nausea that no one has an answer for. Chronic fatigue on an almost daily basis. I went from working 100hr. weeks, to not being capable of holding a regular job. Doctors have no answer. I’m now 67 years old, this treatment destroyed my life.

REPLY
@yumpin

I went through Interferon and Ribavirin treatment 23 years ago. It made me sicker than hell but, I toughed it out. Upon finishing, I told my Gastroenterologist that something is not right. My head was in a fog. I suffered from pain everywhere, I just ache. Perpetual nausea that no one has an answer for. Chronic fatigue on an almost daily basis. I went from working 100hr. weeks, to not being capable of holding a regular job. Doctors have no answer. I’m now 67 years old, this treatment destroyed my life.

Jump to this post

Concerned for you. May I ask what was your diagnosis that they used this treatment for on you? This has not bettered since the treatment? How sad for you.

REPLY

Hi, it has been 22 years since I took the treatment for HEP C. I am grateful that I am HEP C free, but for years now I have been experiencing sever nerve pain in my legs, (where I did my injections) so much so it has altered my daily life. When the pain comes it is so bad I can not continue to walk and must sit. It wakes me up at night it is always there just times it flares up. I have thought that it was from the treatment but could never find any info on it and I asked doctors and they all say the same long term effects are unknown. Well I believe they are known and it is time for a study on just how it has effected people. I am in physical therapy now, trying to be positive but nothing has ever helped. Anyone else have these issues and if so how do you deal with it?

REPLY
@tinap66

Hi, it has been 22 years since I took the treatment for HEP C. I am grateful that I am HEP C free, but for years now I have been experiencing sever nerve pain in my legs, (where I did my injections) so much so it has altered my daily life. When the pain comes it is so bad I can not continue to walk and must sit. It wakes me up at night it is always there just times it flares up. I have thought that it was from the treatment but could never find any info on it and I asked doctors and they all say the same long term effects are unknown. Well I believe they are known and it is time for a study on just how it has effected people. I am in physical therapy now, trying to be positive but nothing has ever helped. Anyone else have these issues and if so how do you deal with it?

Jump to this post

I was treated in 2007. When I have a flare up, I can feel my injection sites. I am sorry you are going through this. I don’t have pain to your extent but I do get pain in my thighs at the injection sites.

REPLY
@calvinwinchell

I went thru Interferon and ribovirin poisioning with a full year complement and have not been the same ever since! Mental and physical fatigue, high blood pressure, diabetes, anemia,skin rashes, poor sleep and on pain medication for years just to operate on a daily basis... after exploring the facts that I was never a drug addict, homosexual, or any other blood exposure I began to investigate my life... I discovered that while I was processed thru the military they injected me with a jet gun and was exposed to hundreds of other humans blood as it was spread... shortly after was hospitalized twice with serious fever, rash, and almost died... diagnosed in 1972 with ARDS and have never been the same since that experience... the Veterans Administration denies any culpability in this process but, if it was anymore obvious a blind person can see it... I have lost faith in the medical community as they have knowledge yet they are controlled not to discuss... I now know as I took a year to investigate this and, have proof positive the US Government spread Hep C thru out the population thru faulty practices and lie and conceal the truth... need help with getting medical care from the VA without a bill associated with what they caused???

Jump to this post

I have lost faith in physician’s , as well, I was diagnosed with hep c years ago. I was put on the same medication you took. When I look back on it, and think I was taking these drugs, while they told me there was no cure for my hep c, at the time. Being young and having complete faith in the doctors, not knowing better. I was prompted to do the hep c treatment. I had a cabinet full of boxes of this medication that was sent to me. I started taking these medication as instructed, not sure how long I was on this medication before I stopped taking it. I was a mother of young child and this medication had me beat. I was so tired, fuzzy headed, and could barely walk a short distance before wanting just to.lay down on the floor, because I was so weak. I still to this day have hep c, but I refuse to go through that again. My doctor tells me there are new medications. He was the one one who sent me to the first hep c doctor. I want to be hep c free but I am so scared.

REPLY
Please sign in or register to post a reply.