Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

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@mrhaney

Is there a link between taking Pagasus alpha II treatment (one year) for Hep C and idiopathic peripheral neuropathy? I have it from head to toe. Seen 5 neurologists 2 of which were MDA specialist. 6 EMG"s 2 DNA tests nothing.Mda no MS no Parkinson's no etc. one doctor said I'm one of 250,000 Americans they have no clue why. I can't afford to keep up with the medical cost because of this and a multitude of other medical conditions after this treatment.

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Don’t keep looking for other symptomatic diseases. If you went through the 48-week treatment for hep-c, you could possibly have what some doctors are calling: Post Hep-C Syndrome. There needs to be more complaining and fact checking because we ALL can’t be making it up! There are over 300,000 people who went through the treatments. How many have lingering issues after these treatments ?…how long are we going to have to suffer before anyone will listen? Keep strong…pray! 🙏🏻

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@robbyd

I was treated in 2007. Some day’s brain fog is worse than other days. If you can, exercise seems to help. I haven’t found a magic pill yet.

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So much pain everywhere. Everything spasms and tightens up when I exert any muscles; i.e. exercise. I feel like my muscles have a blockage chemically. It’s difficult to describe accurately. Even walking for a short period can be difficult. Depends on the day, in actuality! You don’t have that level of pain…good for you! You are blessed that the treatment didn’t do you in like many. And no, there is no magic pill. I think if there was it would have to be Magic! All I know is to count on God daily. Have a blessed week!

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@parrot53

I am wondering why you think this is related to interferon.

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I could work 12 hour days framing houses etc before the drug, so yeah It had some role in the state of my body. I cant swing a hammer for 5 minutes anymore

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@jobycat

I could work 12 hour days framing houses etc before the drug, so yeah It had some role in the state of my body. I cant swing a hammer for 5 minutes anymore

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Sorry if I misunderstood. It is in the “post interferon syndrome” conversation.

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I really wonder how they can run these nasty drugs through you and expect you to have a normal life after. I am on disability now and have NO life. I cant work. I live with a crazy person that treats me like a child and I will be 58 in a week. no options. I wish there was another way. I just find it hard to give a Dam* about anything anymore. I dont like the person I have become

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@jobycat

I really wonder how they can run these nasty drugs through you and expect you to have a normal life after. I am on disability now and have NO life. I cant work. I live with a crazy person that treats me like a child and I will be 58 in a week. no options. I wish there was another way. I just find it hard to give a Dam* about anything anymore. I dont like the person I have become

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I get it. I have been on disability since my liver was failing from the hepatitis-c in 1999. Too darn long! I have stayed single until recent which had been over twenty years. It is difficult to explain to anyone, even friends, how debilitating we have become, let along share it with anyone. I have good doctors now but it took so long for them to listen. I fear the time when insurance will cut off the good doctor care and replace the real medical doctors with PAs or NAs; not that they don’t have their place it’s just we need medical doctors with education and drive to figure out why we are suffering and how to help. It’s still pick and choose to find a doctor who actually will have the time to listen. God bless you Jobycat, keep trusting in God. He is all I really have. God does love us. We have to trust because man has let us down. Much prayer for you my dear. Hang in there. My heart goes out to you! ❤️‍🩹

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@jobycat

I really wonder how they can run these nasty drugs through you and expect you to have a normal life after. I am on disability now and have NO life. I cant work. I live with a crazy person that treats me like a child and I will be 58 in a week. no options. I wish there was another way. I just find it hard to give a Dam* about anything anymore. I dont like the person I have become

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I forgot to tell you….Please ,,,have a Happy Birthday 🎊🎉
Blessings! 🙏🏻👍🏻🌹

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I think I have post interferon syndrome. I took Ribavirin & interferon in a study for Hep C TX in 1997-98. Thankfully I cleared the virus. Took a few most to gain my weight back. But, I'd say that I felt better. I was so pleased to be 'well' again.

Then, maybe 3 yrs later, I began feeling fatigued a lot & experienced muscle aches. Gradually, I began to wake up tired every day. Since I was in my 40's I thought it might be 'cause I was getting old. But, no... these symptoms, brain fog, achey joints & muscles, no energy at all, led me to believe something else was going on.

Most physicians I saw immediately checked my thyroid. My lab work always indicated my Thyroid was not the problem. So, after ruling out hypothyroidism, I think most physicians would just chalk it up to hypochondria. One doc diagnosed me with Fibromyalgia.

I changed employers & moved to another city... New PCP was not interested in obtaining medical records.... So, I'm back in the care of physicians that either think I'm attention seeking or delusional. Fortunately the physician who dx'd me with Fibro prescribed Nuvigil and Lortab. So, til about 2016, it wasn't impossible to get pain meds.

I tried Gabapentin & it did nothing but make me gain weight & exacerbated my chronic fatigue.

So, now that there's such opposition in medical field to rx narcotics, I'm in bed most days. On good days, I might have 2 hours with enough energy to do laundry, shop for groceries, etc.

So many people think I'm lazy... I am just tired and feel physically unwell, similar to the way I felt before my Hep-C tx.

If there's anyone out there with similar issues after Hep C tx, I'd like to chat.

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@mary19055

I was diagnosed with HCV 2B in January of 2000...2 weeks after my 37th birthday...So much for the great outlook for the new Millenium...You are the first person who has posted about ongoing random chills/fevers as an ongoing side effect...After 17 yrs with me MY DOGS even wake me to take Advil if the chills/sweats don't...SMH. GOOD LUCK & BLESSINGS TO YOU.

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I can relate. I may have chills, but the fatigue & muscle pain get me.

It's really hard when people don't understand.

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@mary19055

I can SO relate to this John...I even WRITHED IN PAIN on an ER stretcher for 6 hours because the Dr didn't believe I had such severe lower back/abdominal pain & UNABLE to urinate in a cup, but just 'narcotic seeking'...It was only when the Nurses changed shifts that one believed me when she found I had a fever since coming in & convinced him to do an abdominal CT...BTW, I was fully insured...He came into the cubicle & literally SLAMMED the bottle of Snapple/contrast on the table & said, 'At least when the results come back I can kick your time wasting ass out of here & get somebody that is really sick in this bed!'...Well, the scan showed I had SEVEN kidney stones! Some had partially passed...and were blocking me from urinating...but there were still 2 in one kidney & 1 in the other, & there was no way to tell how many I had passed B4 my neighbor insisted in driving me to the ER ! As soon as the Tech began to see my scans, she IMMEDIATELY called a Radiologist to see/read them. I was already in early sepsis & at risk for bladder rupture/kidney failure by the time they sedated & catharized me to remove over 2.5 LITRES of brown/cloudy urine. Another Hospital's Crisis Social worker just sent me home when I sought help because I was seriously considering taking my life...She just came out to the ER Triage area & gave me a release form to sign that said I had been medically evaluated and no need for emergent care had been found. When I asked what I should do about feeling suicidal, she didn't even turn around/look at me when she said, 'Just do what I am...go home, get some sleep & don't do that.' Two weeks later my pain meds were refilled & I took 10 Zofran...a med to control severe vomiting...then waited 10 mins B4 taking the entire bottle (90 tabs) of 80 mg Oxycontin...When I didn't answer my phone after trying for an hour, a friend called the Apt Bldg Mgr, who called an Ambulance when she went to my apt & couldn't wake me...Between 2000 & 2004, I was given 3 different 'rounds' of Interferon/Ribavirin & Peg Interferon/Ribavirin...Those treatments did NOTHING for my HCV, just took my THRIVING/active life, Paramedic career, & even my Marriage, & left me in CONSTANT/EXCRUSCIATING pain in every joint of my body, depressed, bedridden almost 24/7...& alone except for my 3 chihuahuas...THEY, & my Faith have been my ONLY answers to, 'WHY DO I KEEP ON DOING THIS?', or stopped ME from asking/Praying not to wake to another day...SO many times...I can't believe with SO MANY of us left with such similar/ongoing symptoms that have left us shadows of the VITAL people we once were, MANY YEARS after taking the same drugs...and with no other explanation...,we just go ignored AND EVEN BERATED AS MALINGERERS, FAKERS, HYPOCHODRIACS &/OR 'DRUG SEEKERS'...by the medical/legal systems. HOW/WHY CAN THIS BE POSSIBLE?!

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I have been so pissed at docs & pharmacists who've rolled their eyes at me that it took a lot of restraint to keep from punching them in the nose

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