Post Interferon Syndrome

[alysfreeman]

I'm 54 and SVR after 3 treatments starting from 1993, 1994 then Peg & Ribarivin 2003. To say it was a roller coaster ride to hell is an understatement.

I hold strongly that I have Post Syndrome...I have intermittent fatigue after being active, takes me at least 2 days of resting to recover from any strenuous activity, and I mean flat out and sleeping, then I can have periods of insomnia which I never had before. I have had a major shoulder op due to rotar cuff deterioration, carpal tunnel release right hand, and looking at the left soon. Left knee cartilage repair, now due to have my right one done. I have aches in my joints which are random, clumsy as well.

My brain feels like sludge, some days my thought processes are a joke. I forget things like appointments, leave pans on the stove, unable to concentrate, get irritable if the environment is too noisy and crowded. I have depression and get anxious if I feel stressed and that in itself makes me feel unable to cope and make a decision.

I have coped with this by managing my time and environment which basically means, I can't work, I avoid any situations that would provoke stress or over stimulate me. This is not what I was like before, I was outgoing, worked and had a great social life. I have changed and often feel dead inside.

What has this drug regime done to me really? Yes, the hep c is undetectable but I can never donate blood or major organs (even tho I'm cured...joke!) tho I have been reliably informed the little bugger hides away in the lymph somewhere.

I read on here others that have similar symptoms and I wonder if we are a part of the treatment that pharmaceutically companies ignore due to profits from such a global problem. As time goes on more and more people express long term health and mental changes.  I'm glad to be SVR but honestly...it has curbed my life and made me feel old no matter what I try to redress it. My GP is great and she agrees that immunologically there is probably changes and I was warned in 1993 that any existing conditions will worsen...so what did they know then?

I am a qualified nurse but not practicing now so any medical information or research that you know of would be of great help to me on my quest.

I would be so happy to hear from others as I would like to correlate the evidence somehow and also share and support.
best to all
Alys.

[MMI333]

I’m about 6 weeks post rib/solvaldi 24 week treatment.  I am experiencing all of the same post treatment effects listed by everyone less the pain and add insomnia, jumping and blurry vision and muscle spasms/twitching.  My post is a bit long but I feel important to document/share.

I am so much worse now than before starting treatment and yes I had major fatigue and escalating brain fog depending on the day but no where as consistently bad as during and after treatment.  

In addition I don't know what has happened to me, it's like I lost of my personality which is not from depression, though I do feel i have gotten depressed from feeling this way and what it's doing to my life.  

I am/was a sales executive which I can not return to under these conditions
I am a single mother and sole provider.  I am getting close to losing everything if I don’t get better and back to work or approved for disability soon.  Prudential, my employer’s ltd company is putting me through the ringer and to see how long many of you have been dealing w these effects is very scary.

I am certain the ribavirin is the key and though you all mention interferon i can tell you this treatment triggered issues with my immune system, I also have hiv.  I have been pretty healthy w no immune issues but towards the end and after hcv treatment my immune system got very wacky and then experienced all the intensified symptoms (ie. fatigue, brain fog, memory/concentration issues, loss of personality, insomnia, ect)

The level of the incompetence, lack of support and out right deceit throughout the medical community is criminal. I blame the greedy pharmaceutical companies but also my doctor.  As many of you probably know, the media and medical community positions the treatment as a miracle w minimal to no side effects.  There was no forewarning and i never thought to research post treatment recovery, as the treatment was made to sound like a breeze, not there is really any info available anyway.  I have really been digging to even get to this site and some other data that i just found.  I would have waited as right after i started there was all kinds of new announcements about non-rib/int free treatments by the end of this year and around the corner.  I was never given the chance to make an educated or proper decision and am paying a big price now.

I called the pharmaceutical company, Gilead after treatment and my doctor had nothing to offer or suggest. Gilead insists they also have never had any of these complaints and there no post treatment studies or data.  
Then they tried to pass the buck on to the ribavirin companies, though they should be just as responsible as rib is required w solvaldi. I just want to get better quickly and before my life spirals down further as I don’t know what I will do if I lose everything exposing my 12 year old son to such a traumatic experience.  

I’m going for a neurological cognitive evaluation in 2 weeks.  I can’t believe the class action law suit is closed to individuals and against these companies however they sound like interferon based cases.  With my experience it now shows this may very well be the ribavirin, as I can tell you it definitely caused these issues in me and have a lab report showing proof of a symptom that was always associated w interferon in hcv/hiv patients.  

I’d be very curious to see if any other people who just took the new rib/solv  people are experiencing the same.  If so please share here.   Maybe we can all come together and open a new class action law suit. It won’t get our lives or lost time back but at least get some compensation for this atrousity and greedy people who are making billions off of our misfortune.
  

[susan400]

I was reading your story.  I don't know if you've ever seen my handle around here on these message boards, but I've been on the Medhelp Hep C message boards for 11 yrs.  I am both a post treatment person and I am current on the Sovaldi, Pegasys and Riba (this being TX #11).  The good news is I finally had an undetected lab, on week 4 and week 8.  The bad news is that I've suffered many of the post treatment issues already for many years.  I used to work early on on my earlier Interferon treatments, like number 1-4, but the drugs took a toll on my brain.  I was already behind when I was coming up in school and never did catch up to the other students, but somehow managed to graduate high school. Somehow, I had managed to work in unskilled labor type of jobs,from age 16 to 40.  But, after what it did to my brain, I couldn't retain any information for long enough to learn a job, learn new tasks, remember new directions, like when my workplace would, 'change something'.  I was having stress 'meltdowns', then, getting depressed over that and unbelievable fatigue.  I feel like I'm going to be wiped out for the rest of my life.., at least that's how it feels.  It's incredibly frustrating to be 53 years old and unable to have a job, but it is what it is.  I tried to go to workplace development center and see if could be rehabbed.  But, when they did the placement tests, I've lost so much of my brain 'grade' on the testing.  Even though I graduate grade 12, I'm testing at grade 5 in math and grade 8 in reading. It would take me too long to get rehabbed enough to test higher, in order to qualify for further training, so, I hate to say it, but I felt overwhelmed by the thought it, and too tired to even think of attempting it, so I gave up.  So, now, I've been on SSDI (which is the social security that you pay into when you get a FICA taken out of a paycheck) and my monthly checks are based on my work history of earnings.  Fortunately for me, my husband works and if it wasn't for his added financial help, I would not be able to live on Soc. Sec.  I guess the reason when I was willing to do this last treatment was because of all the good percentages there were for viral clearance.  But, it's been with interferon and once again, it's taken a toll on me and the Riba has made me crazy.  I am so glad that in less than 2 wks, I'll be done with it.  I seriously was talking to someone about my living on a golf course, and I couldn't remember the word 'golf club'.., I had that much brain fog.  It's pathetic.    Anyhow,  want you to know you are not alone.  Susan400

[scottie24]

Thanks for the heads up on d-ribose and NADH.  I wonder if there will ever be a class-action suit.  The profits are so high, and the evidence needed (status of all patients one year to five years post-treatment, as compared to those who never treated) so difficult to get, it may never come.  The docs who do issue reports showing increased harms - one has to wonder how much pressure is "bought" to bear upon them.  

...

So a  study from Osaka Japan has made a strong link between brain inflammation and fatigue.  

I am near certain that many of us hit with the worst side effects of these drugs suffer body-wide inflammation commencing at some point in time after treatment (90 day or so w/ Inf/Riba , anecdotes on these boards may suggest a couple weeks w/ Sovaldi in the picture).  "Body-wide" includes the brain.

This could be one factor leading to the immense post-treatment fatigue experienced by many and why so many of us find a non-inflammatory diet a good thing.

[jivacite]

Go to www.justice.gov to find out just how horrible Schering Plough is. The government won a lawsuit against them for around half a billion dollars. They have been paying since July 27th, 2005. There is a class action suit against them but now closed to new "lepers" like us. And even better the Supreme Court recently decided you can't sue Big Pharma. I feel for all my brothers and sisters out there suffering as I am. In addition to all of the suggestions for improvement in the fatigue department I've found d-ribose and NADH helpful too. God bless

[otterwatcher]

Many congratulations! I'm the same age as you,also had hcv since the 80's,SVR 2007 on the old combo but Post Interferon Syndrome kicked in 3 months post treatment.
Really glad you got a good result-woohoo! xxx

[Dbzc2]

I just got my first post treatment result (two weeks post treatment) and for the first time ever I am non-detected SVR.

Typically when the meds stop my virus comes back at about a million plus...

This is my first ever non-the table test and fourth Hep C treatment!  I really needed this boost to take on the rest of the tests and sustain my hope for a Hep C Free future!

Thank you all for the comments.  I will ask all these questions when I see my liver doc in Houston.  Thank you! I really would not have known what to do.
Best wishes to you all, dbz