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Post Interferon Syndrome
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.
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? re the  " naltrexone".  Is this the same medication they use to block optiates from affecting you?  I think that is the name of it.
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MrsDMK:  "yes" to both of your questions.
Naltrexone is indeed an opioid antagonist, and low-dose naltrexone (LDN) is specifically used to 'calm down' an overactive immune system.  LDN is also a cornerstone of liver disease therapy prescribed by some physicians, with Dr Bert Burkson being perhaps the most notable.
The side effects of the interferon/ribavirin therapy can be permanent;  mine are still with me nearly a decade after treatment - and I've rec'd similar reports from others.  Fortunately I did clear HCV and am still "svr" nearly ten years post-treatment - but it was a higher price to pay than anyone had led me to believe.
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253566 tn?1219683299
Hello mrsdmk,

Yes, 6 years would be right on... one year I would not call PIS as the poisons may still be working themselves out of the body... but who can really say???

Just my opinion - after two years and with heavy sides that don't reduce but continue to get worse would be PIS, just my opinion...

I started interferon/ribavirin at the end of 2004 lasted 72 weeks. So lets give it till early 2008 to call it full blown PIS and as of this year it will nearing 6 years that I have had full blown PIS. I don't believe it will be getting any better and as a syndrome all I can hope for is to treat each syndrome.

I am hoping to get onto LDN asap but it has been frustrating working with the medical community in this state.

best of luck to all,f
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Got hep c from blood transfusion in 1981. 28 years later I took  treatments for 53 weeks. Am free of virus, but what a price to pay!! I too have much of the same symptoms as most of you ( extreme joint pain, fatigue, etc. ) Have tried talking to several attorneys, but to no avail. Nobody seems to care. If anyone knows of any legal help--I would be interested.  This disease took my life away from me. I was 32 years old at the time.  Could not find employment. Going from a dean's list student to being a carpenter has not been easy. My income has been miniscule, so now my social security reflects this. I am looking for HELP!
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As of Jan 2013 I complete my 5th 48 to 52 week course of Interfuron with various other drugs. 1997 to 98 straight Interfuron Alpha 2b for 52 weeks, 1999 to 2000 Interfuron Alpha 2b with 6 ribiviron pills daily for 52 weeks, late 2001 to 2002 I was a study patient on interferon (I think it was gamma),[approx. 2001 I was also diagnosed with cirrhosis of the liver stage 3 of 4] 2004 I was on Peg interferon for another 48week course, but had to stop working at that time because I had deteriorated so much in that 8 year duration health wise as well as psychologically that I was no longer able to work.  Then, the most recent 48 week course was from February 2012 thru January 2013 which was Interfuron, teleprivar and ribavirin.  This allegedly cured me as the virus in no longer detected in my blood.  However, the damage to my body and quality of life is like an aftermath of an f5 tornado.  I take two days to recoup any time I go anywhere, and the only place I go is to family where I can sit or lay down when necessary.  I look forward to gaining insight via this group forum.. it's the first time I feel I'm in a place where people understand and speak my language health wise.
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I am 57 as well.  I went thru 5 different courses over a course of 15 years.  After 8 yrs of  working fulltime and going thru the various treatments, I ended up going out on disability and have since retired because I was no longer able to work and endure the treatments.  At one point my viral count was over 15million.  The damage that I have been left with (I feel is permanent) I suffer insomnia, high blood pressure, diabetes, obesity due to weight gain from these 15 years of treatment, joint pain, memory loss, depression from the pain, low quality of life and condition I now find my self in with regards to my health...  I do not feel that my doctors (with the exception of one)understand what I have been left to deal with in the aftermath of these treatments.  Or, they are not concerned because it's not their field of practice...  Thank you for your input and candidness which has in turn allowed me the comfort to open up relative to my own circumstance.  Talk more later, it's pretty late here and I am getting tired.  
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I am a 56 year old male. I was diagnosed with Hep C which I got from a tainted batch of Gamma Globulin (protects against Hep A&B) during Desert Storm 1989/90. Had hep C for 12 years undetected. At the time I was flying aircraft for the USAF and had been at Andrews AFB flying for the President.
I went from a healthy, happy active person to someone that evaluates quality of life and whether this is worth it to continue on.

I KNOW WITHOUT A DOUBT that all of the fatigue/headaches/joint pain/brain fog/ loss of drive and mental acuity came from the Interferon / Ribovirin  therapy because it all started with my first injection.

My liver was in great shape and I wished I had never consented to treatment (kind of hard since military doesn't give you that option). My first shot I did on Sunday and slept till Wed. I am a 1A genotype and did 6 months Interferon / Ribo (didn't work) and then did 10 months of Peg-Intron / Ribo ( which didn't work either). They all said (military and civilian doctors) that it would take 12 months for it to get out of my system.
I finished treatment 9 years ago and am still waiting ------------
My life feels so pointless because I am so fatigued all the time that I can barely get anything accomplished (prior to treatment even though I was younger I could put in a 36 hour day flying sleep 6-8 hours and do it again)
They have tried anti-depressants (BIG mistake because it makes everything worse) so I came looking to try and heal myself and thank you to some of the posters for alternate therapies
It really ***** to see so many people with screwed up lives (the severity really seems to differ)

The worst part is getting the medical community to actually acknowledge what has happened and find some relief / cure to help everyone. It is definitely a problem started by what they thought was a cure for Hep C

I dread waking in the morning feeling like I haven't slept in a week and realizing that this is as good as it's going to get. I only want to wake up and feel normal and hope everyone else in these forums feels as good
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Hate to hear so many in the same boat, but good to know it's not just me and not all in my head. I have been to so many doctors over the years (10 clear - "cured" in all) looking for help symptom by symptom, much to no avail.  Being a nurse helps a bit and my determination for answers with research.  Years ago when I finished treatment there was little to no information out there on this subject.  The medical community, especially the pharmaceutical companies all denied there should be any repercussions after treatment and we should all have just bounced back to normal like magic!! HA!  

One thing that I did learn that has been a bit helpful to me is that after learning that the treatment made me hypothyroid (it took a long time to find a doctor that would look at symptoms and the WHOLE thyroid panel not just the TSH which is so outdated.)  They thyroid medicine alone did not make a huge amount of difference to the way I felt, but learning that hypothyroidism can affect stomach acid and iron and treating that is beginning to make a bit of a difference finally!  As we age we make less stomach acid not more also.  So I started, with the help of my DO to supplement Betaine HCL with Pepsin with meals.  I wasn't absorbing the iron and my Ferritin dropped after treatment to 8 and stayed that way for years.  I finally found a Doctor to give me a couple of iron infusions and combined with the supplements am feeling  al little better than I have in a long time!  Everything is connected in the body.  I feel like the battering of Interferon and Ribavirin can permanently damage the immune system.  I am getting ready to retire with my husband because the 3 days per week of heavy duty physical and mental work as an RN is just wearing me out further.  Best of luck to all.  Keep searching for health care professionals that will listen to you!!! It's your life.  And there's only one.  
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317787 tn?1473362051
I recently started taking Alpha Lopic Acid to help get my sugar under control.  I am surprised at how much better I feel since starting.  
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Dee, thanks for the suggestion.  I've heard other good things about ALA, esp as an all-round excellent antioxidant.  Presumably you're taking ALA daily?  If so, what qty or dosage is recommended??
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I suffered with same problems that you have for the last 13 yrs. and as I get older they are get more debilitating, I had been working up until April and now have been on FLMA since, because of joint pain and nausea. Since interferon and ribavirin treatment I've had 2 Heart attacks, 1 two years after and another 3yrs. ago, 1 month later I had a double by pass on a separate artery, I seen that they have reports that the ribavirin causes blockage of your artery's, whether this was my problem I don't know but no one ( Drs.) will admit to this. When I started to have the most memory loss was before my last heart attack, the Drs. have subscribed pain meds. and steroids to counteract the pain, but it is only a temporary fix. I'm lost I have been suffering with bouts of depression because of these problems and don't know what to do next, I'm sick of Drs. and medications that give me no relief, if I had known 13 yrs. ago that this would be the quality of life I was to experience, I would have never done the treatment. Thanks for letting me blow off a little steam.
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747988 tn?1396540478
sounds like you needed to do that! this is exactly what this forum is especially good for!
do hope we can give you a bit of support and a place to talk openly.
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I finished 72 weeks of Interferon and high-dose ribavirin in December 2008 and still have side effects. I was put on Wellbutrin when I started treatment and am still on it. I tried to wean off, but my feeling that nothing in life was interesting was so pervasive that I went back on it. About 6 months after treatment ended my thyroid gave up and I've been on Synthroid since then.

Besides the memory loss, fatigue is my worst enemy. My memory problems are typically not being able to call up particular words or names and losing my train of thought. My fatigue was something where I always felt tired and napped whenever I got a chance. I finally started on Adderall, and it mad a big difference. At first I didn't like the jittery feeling from it, but with dose adjustment it's a lot better, and I feel it is very beneficial.

I've read up on many of the Nootropic supplements that are out and am starting on Noopept soon to see if my cognition improves.

Lastly, and I'm sure that many will echo the sentiment, if I had known that the new drugs were going to be so effective I would have delayed treatment and spared my brain from 72 doses of Interferon.
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I was looking for some post treatment experiences on this forum when I realized that most treatments used per this form were w/interferon/ribavirin etc.  I waited 13 years and grateful for the insistence of my doctor to get another liver biopsy done...it revealed I was stage III liver disease. Her insistence was also to use the interferon/ribavirin...I refused.  January 6, 2014 I start a 12 week treatment plan with Sovaldi and Olysio -  and showed no signs of the virus after two weeks and I have not had side effects.  I only wish these drugs were available much much sooner for everyone and I know perhaps due to individual health situations could not wait for the new generation of drugs such as Sovaldi and Olysio. I will redo labs within 6 mos...if all clear then I would be considered cured...I'm hopeful.   I had no side effects during or after treatment and feel truly blessed.  The only side effect was an increased appetite...I could use the weight. The two new drugs are revolutionary in my opinion.  I pray that you all will feel better,  be energized, regain memory, stay positive and find the one thing that interest you in life.  Reevaluate the post treatment drugs you're using and I pray that you are in great medical hands with health professionals that truly care about your well-being.  I am a 57 year old female/Genotype 1.  My insurance company covered the two off-label drugs which is a miracle within itself.  Good Luck  .  
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Yep it is a paper worth looking at.
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9662954 tn?1405609759
I did three interferon treatments that did not work.  That was when I was perfectly healthy! All to rid my body of hep c.  Then cirrhosis and elevated LFTs and portal hypertension struck Oct 2013.  I was told it was just a matter of time before I would die from Hep C .  I never stooped feeling pain, battling fatigue, and periodic brain fogs...then it got much, much worse.  This past April I was approved to do the experimental drug combo sovaldi &olysio.  I felt a bit better because I was speedy from the Drugs.  I just finished the 12 week treatment and was told regardless of outcome, everything that could be done has been done and I needed to have my primary care doc deal with all my side-ehhects: post interferon syndrome, the permanent damage from cirrhosis and severe fatigue, pain and insomnia.  I was surprised how quickly  I was dropped by my liver doc and turfed out not even knowing if these experimental drugs worked?  All I really wanted to say is thank you! I now do not feel like a hypochondriac!  I was going to punch the next doctor who told me there are no side effects post treatment!  Now I know there are and I do not have to feel like I'm crazy! So, regardless of outcome, thank you for giving me back my sanity! I am a female, 54, and have had this disease since 1980. I'll post to let you all know if the experimental drugs worked or not. However, again...thank you!
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253566 tn?1219683299
Welcome to the forum and a little bit of sanity!

It really is something to find things all fall into place when you see that there are not just one soul with the same thing as yourself but many more... and that your special doc doesn't know it all! ALWAYS REMEMBER THAT! Your doctor does not know it all! You know your body better than your doc does!

Just punch!?!?! I am a very peaceful person and I was planning to take out the Liver Center but couldn't find a way to get a suitcase bomb! So sad...

The Liver Gurus tell me that I am 'CURED" but have PIS 10 years after finishing treatment. Judged 100% disabled!

Welcome to the club. Best of luck in your next experiment. f
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9662954 tn?1405609759
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
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747988 tn?1396540478
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
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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
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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.
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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
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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.
  

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747988 tn?1396540478
I always felt like the riba was the problem for me-I felt sick just looking at those toxic pink pills.Altho I was diagnosed with Post Interferon Syndrome I also feel my fatigue is mitochondrial toxicity from the ribavirin. That feeling of losing something of your essence-something important-the thing that made you who you were...I know that too well.
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"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."

It's called "depersonalization syndrome."  It's scary and very difficult to deal with.  It also is recognized as making it very hard to work.  A whole different flavor than depression. I know what you feel.

Based solely on observations from this forum, Sovaldi seems to bring on post-treatment side effects in about 30 days.   Based on observations from this forum and personal experience, INF / Ribavirin takes about 90 days, post-treatment.

The post-treatment side effects are not directly caused by the drugs, in my opinion.  They are caused by immune systems gone haywire from the drugs. Your body attacks itself as the drugs leave the system, and tissues (be it skin, kidney, nerves, brain, bone, thyroid, pituitary, whatever) get inflamed and that's what causes you to feel so whacky.   These drugs are like throwing a shotgun blast into the body. Never know what they'll hit. Take out some bad stuff maybe, but often take out some good too.  In my judgment, anyway.

Until very recently, the warnings never mentioned "depersonalization syndrome" or alluded to the fact that interferon alters your immune system.  If the warnings were fairly given in plain English, few people would probably take these drugs.  

It has taken a peculiar combination of arrogance and naiveté across the field of hepatology and gastroenterology to give these powerful immune-modifying drugs to patients with no or little counseling and advice ("six months of flu-like symptoms" - we've all heard that, right?) and to just bury their heads in the sand as to what long term effects upon the immune system may remain. There has just been this wide assumption that once you quit taking the drugs, all is well.  Then, brain-addled people have a very difficult time making their difficulties known and appreciated.  It's the perfect scam. Those they damage are mostly silent and incapable of fighting for themselves, best case.

I think American Western medicine crossed a line in its treatment of this disease (witness the uproar as to the cost of S/O), and it's going to have a lot of repercussions down the road, as to value judgments, what is right, what we should pay for, how much patients value and trust Western medicine doctors, what values doctors should have (are they merely chemists or should they think more about life and living), how intertwined their practice is with the pharmaceutical industry, etc.  Maybe I think too much.

Pharmaceutical rep replaces used car salesman in more and more people's eyes, that's for sure.


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Inflammation of the brain and how it affects your cognitive function, personality, etc. -

http://www.wellnessresources.com/health/articles/brain_inflammation_now_documented_in_chronic_fatigue_syndrome/

The foregoing is a discussion of this article:

http://jnm.snmjournals.org/content/55/6/945

which is freely available only in abstract form.


I truly believe the foregoing - brain inflammation of the primitive parts of our brains -  is the key to the damage to our minds and personalities.  I did not feel anywhere near as bad during treatment as I did six months afterwards.


Note also the following about fasting - it may help reset the immune system after chemotherapy (they never told us it was chemotherapy, either, right?  :-)    )


https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/




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747988 tn?1396540478
it's actually immunotherapy altho it is used in treatment of melanoma and more post treatment info is available for those circumstances than for hcv treatment. Post treatment syndrome does seem to be very similar to chronic fatigue syndrome,in fact some research is being done into cfs using hcv patients undergoing treatment as a model. I felt awful during treatment,started to feel better then approx. 3 months later it all kicked in.
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253566 tn?1219683299
"It's called "depersonalization syndrome."  It's scary and very difficult to deal with."

Wonderful... I don't know how long the list of syndromes is now but here goes another! Actually I have been able to deal with this one a bit better than some of the others! That is why my current therapist keeps congratulating me on a job well done! And I can tell you that AntiDepressant didn't help me on this one!

"...They are caused by immune systems gone haywire from the drugs. Your body attacks itself as the drugs leave the system, and tissues (be it skin, kidney, nerves, brain, bone, thyroid, pituitary, whatever) get inflamed and that's what causes you to feel so whacky. ...

Until very recently, the warnings never mentioned "depersonalization syndrome" or alluded to the fact that interferon alters your immune system.  If the warnings were fairly given in plain English, few people would probably take these drugs."

As for my HepC/Liver docs that is all they did talk about actually - the part about the immune system - maybe it wasn't "altering" but "revving up" something like that... and as I recall in reading thru the warnings of both INF / Ribavirin *the print was like the old time Bible and nearly as thick = even my mother was shocked at the warnings and she is a medical experiment in her own right!... even included death. AND, like otterwatcher, riba - I kept asking about those horrible things and they kept telling me they really didn't know much about them after using them for over 10 years!!!

"It has taken a peculiar combination of arrogance and naiveté...  It's the perfect scam. Those they damage are mostly silent and incapable of fighting for themselves, best case."

"I think American Western medicine crossed a line in its treatment of this disease (witness the uproar as to the cost of S/O)... Maybe I think too much."

"Pharmaceutical rep replaces used car salesman in more and more people's eyes, that's for sure."

I had a very old Chinese acupuncturist who tried to realign me for a number of months. HE finally gave up saying "Western medicine has damaged you too much for acupuncture to help!". This doctor was also a western physician - I think a surgeon but I forget...

I hope you are correct, and I believe the same as you in that the HUGE push to treat HepC no matter what for the "cure" of a virus! as a scam will eventually become a major problem for all involved - unfortunately all in the medical community from the FDA to big pharma to the docs, reps etc all work very well together in the scam *nearly forgot the insurers!!! attorneys!!! etc.

I made a complaint against an endo doc and her office, I have yet to see the report but with a follow up call can already tell they are covering for the doctor. The patient is the least interested party in it all in most cases until the numbers get so enormous and Congress starts complaining more about just cost!

Anyways, I don't know if my thoughts came out clearly but I just wanted to say I do appreciate your well written post scottie24!
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253566 tn?1219683299
chemotherapy vs. immunotherapy

I only heard my GPs nurse call it chemo and then some called it immunotherapy...

Anyways, I found those links fascinating and will bring them to my GP.

Thanks both. f
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317787 tn?1473362051
Thank you all for sharing.  I really appreciate it very much.
Dee
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317787 tn?1473362051
Hi, another member put this URL in another thread, I thought it might help others.

http://www.hepatitiscnewdrugresearch.com/hcv-neuropsychiatric-symptoms-ldquobrain-fogrdquo.html

Also after treating I used NADH to try to help my brain fog.  I believe it did help me with the worst of it.  The problem is we are all different so no way to know.  I also tried Dribose.  I had forgotten about it until someone else  mentioned it
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Hi, glad I have found this forum. I am 61 year old male who is virus free after 40 years of Hep C with stage 3 liver disease. I have been treated 3 times, the first with interferon, second with interferon and ribivirin, and the last was with interferon, ribivirin and incivek for 11 months. The last treatment ended in June 2012 and was brutal. Now 2 years later I have never felt worse in my life. I am experiencing headaches, severe fatigue, brain fog and joint pain on a daily basis. When I sleep i can't bend my legs or arm because of pain. I essentially have to sleep at attention. Reading has become difficult because my attention span is pathetic. Praying it doesn't get worse.
Steve
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My husband did treatment immediately when FDA released the new treatment 2 years ago.  Within 12 weeks he was undetectable.  As a caregiver it was very hard for me to watch him suffer.  Within the 2nd week of treatment all known side effects and then some kicked in.  The liver specialist promised he would be there for his patience during treatment which we discovered was not true.  He was only interested in the before/after results and don't bother him any symptoms.  I then took a lot of matters in my hands and did a lot of research on my own and studies other peoples prior experiences and what worked for them per symptom.  The people were helpful.  Since my husband was basically bed ridden throughout the treatment and lost so much muscle mass, I asked the liver doctor during one of the visits to check his liver that would he please do a more thorough panel on him beyond checking his liver and for anemia.  I asked him to check his hormone levels which is a major factor in your overall well being as a man or a woman.  The doctor looked at me as if I was nuts, and thought I was selfishly asking for my own needs.  I said especially check his testosterone levels because I was convinced these meds have killed it since he was so  weak.   Doctor reluctantly did as I requested and sure enough I was dead on.  He was at the lowest levels, thus also bring him down in strength and also kept him down post treatment and unable to fight infections easily.  Once he was cleared of the Hep C, the GP put him on Androgel which is topical.  We waited a while to see if it would work but it was not strong enough.  Once doctor gave him shots of Testosterone, quickly his immune system starting recovering, he was getting more energy, his body stopped hurting so much, he started loosing the excessive weight he had gained post treatment and he started getting an overall better feeling  including loosing the brain fog.
Therefore, my suggestions is some of the commonly missed with doctors.  Have them do thorough blood panels including your hormones (which they will not check unless specifically asked).  Your hormones play a big role in your immune system and overall well being and believe it or not a lot of health issues.  I'd rather substitute hormones rather than more pharmaceuticals.  Husband only takes vitamins and Test.
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For all of those referring it to chemo. Our GP's first comment was "It is like chemo to your liver".  He hit it right on.  He was very sympathetic to my husband. I think he was more forthcoming with the consequences of the treatment than the liver spec.   I asked him if Hormones play a role in inflammation and he said he was not sure and with his low  results it was worth a try.  Soon after most of the inflammation has gone away.  I was also suffering from inflammation due to post surgery and I also looked into my hormones and sure enough that was a major problem.
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I attempted interferon/ribovirin twice: I only lasted about five weeks each time because the side-effects were so severe and support from the NHS criminally non-existent. Last time was nearly 7 years ago yet I still have memory damage, gout, tendonitis, visual loss, sleep problems, nervous problems and god knows what else. The CFS wore off about 2 years after stopping treatment but it may as well not have as I have no volition whatever, I'm almost a cabbage. Memory and sleep improved about 4 years after, but have since started deteriorating again along with balance and coordination.
Consenting to treatment was the biggest mistake of my life, I was conned into it with a pack of lies. Yes, its all about money; they get paid for signing you up, paid again if you consent to participate in "research projects", paid again when they make you see the nurse or call you to appointments where they just talk about cricket, paid again for having a "student" present: one long gravy-train is the NHS. Doctors should all be sole traders you can sue if they do wrong and not pay if they are rubbish.
I was in an at-risk group with evidence of a pre-existing auto-immune condition. I pointed this out to both consultants; assured I'd be watched, but abandoned when it all went bad. I've lost my house, hundreds of thousands of pounds, and now cannot work. They continue to deny their treatment caused my problems when it obviously did so I cannot even get basic welfare help. There is no justice in the UK.
And of course it never came close to curing HCV, although ironically that has never given me any problems. In a nutshell DONT DO IT.
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Re Supplements that help. DHEA helps me a good deal and I've heard others report the same. In fact, it ought to be prescribed and free as part of aftercare, at least for men (there are some alleged dangers of masculinization for women so I don't know if it's worth the risk). In fact any "body-building" types of supplement are likely to help, eg alanine, and other amino-acids for energy eg carnitine, glutamine. Reishi mushroom powder (aka ganoderma) is also damn good (you must take it every day to gain any benefit. Buy it on ebay from Thailand)
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747988 tn?1396540478
interferon and celiac's disease...                                   http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-28032004000200012
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I tx'd for  almost a year w/ pegasys & 800mg. Ribavirin from either '06-'07 or '07-'08. (Bad brain fog--STILL!)   Still UND
I worked each day on tx at an extremely physical job while HGB fell and started Procrit....but now- I am collecting SSD.
I am much worse now than on tx or pre for that matter...
Many of the same sx's as above.  
I was so glad to see this forum (and recognize some names-Hi all) and especially know I'm not alone in this.  I will read through all the posts on each thread.
I'm experiencing...
Muscle aches
Extreme fatigue
Joint aches (RA+)
Thyroid (Hypo)
Numb hands
Psoriasis has never gone away (Much better though)
I still have a sinus thing that has never gone away since tx and also a slight ringing in ears that has gotten a bit better. (Or I'm used to it)
The fatigue is SO CONSUMING!!
Anyway-I look forward to being here again and reading all the posts
Xen
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747988 tn?1396540478
pub med re peripheral neuropathy and antiretroviral drugs       http://www.ncbi.nlm.nih.gov/pubmed/11293802                        
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i took the treatment in 2005 and ten years later i have brain fog aged abt 30years out of breath deppresed cant even think straight so so tired all the time the list goes on im always in bed i actually feel suicidal tried all sorts of meds i would rather have hep c i was ok when i had it i am a female 52 and feel abt 90 my life is over and no one understands unless they have been through it.
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hi im sorry to tell you but i took the treatment ten years ago and my symptoms of fatigue and depression brain fog the lot i am 52 from the uk it has ruined my life i used to be so active would have rather lived with the hep c x
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me too i feel the same i was ok when i had the hep c done the treatment 10 years ago and never recovered .
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7002065 tn?1443077214
You said that the 0.5 naloxone which comes with the subuxone worsen your status. Well, naloxone doesn't get into the bloodstream. It's in the Subuxone only to prevent users from injecting the drug.Naloxone is IV only. You need naltrexone to get the desired effects.

Good luck
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Check this article out!!! There is proof that interferon is toxic...and explains all the problems resulting in the fibro....law suit anyone?

http://www.cortjohnson.org/blog/2015/09/20/spinning-fibromyalgia-brain-findings-suggest-dopamine-may-be-key/
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7002065 tn?1443077214
interferon causes autoimmunity in the brain
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Was treated for hepatitis C in 1999 at Wake Forest Baptist Medical Center I still have basically the same side effects that I experienced when I was on the interferon I posted because I did not know that so many we're going through the same things
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7002065 tn?1443077214
it's a shame how many are cut short in their quality of life, never warned, symptoms are hell
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I'm constantly surprised by the number of people who still add to this page.
I may not reply asap as I have days I can't but it doesn't mean I don't read them.
How they can deny that this is a fact with all of us saying the same complaints is beyond me...
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You are far from alone...I have come to the conclusion that natural methods are the way I will go having been the rounds with conventional medicine. I am fortunate not to have bad pain but the exhaustion effectively rules out life as I knew it pre interferon. I believe that there is some acknowledgement from individual Doctors regarding on going after effects but doubt that an admission will be forthcoming. All the very best to you and all that still struggle. I celebrate small improvements and am learning how important it is not to charge back into action when have a little energy. It always seems to result in a crash if I do,
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You are far from alone...I have come to the conclusion that natural methods are the way I will go having been the rounds with conventional medicine. I am fortunate not to have bad pain but the exhaustion effectively rules out life as I knew it pre interferon. I believe that there is some acknowledgement from individual Doctors regarding on going after effects but doubt that an admission will be forthcoming. All the very best to you and all that still struggle. I celebrate small improvements and am learning how important it is not to charge back into action when have a little energy. It always seems to result in a crash if I do,
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I am in a similar position as I went thru some months of hcv therapy with interfuron, ribaviron, and incivik. Treatment failed after maybe 3 or 4 months. I am an RN BSN so am not uneducated in medical matters. My life as I knew it no longer exists. Every professional basically writes it off to emotional problems. I really had no propensity to emotional issues prior. I am extremely sensitive to drugs like Lyrica, normal doses of antidepressants.
Afterwards I had a suicide attempt with a knife to my left chest. I am now 63 yo disabled nurse. I could go on with signs and symptoms like CFS and fibromyalgia. Fatigue, joint aches are very prevelent. Mind fog, tremors, and lack of coordination prevail. My rheumatoid factor is up around 10.
Everything has changed. I do not know what to do or whether my life is stuck in this position. I can barely read a book because my concentration is so very poor.
Any suggestions?
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7002065 tn?1443077214
try memantine and stay away from gluten, try prednisone or hydrocortisone for the fatigue and mindfog. try to stay on a low dose. good luck
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I was looking at the answer given to you by 'lookbehindyou' and I am interested to see that gluten was mentioned.  I have become fiercely intolerant to gluten since my treatment in the late 90's...I would be interested to hear if anyone else has gluten intolerance or IBS that they suspect may be related to INF a. Also I have always been annoyed by the fact that women in Ireland who received the Anti D due to Rhesus Negative blood after pregnancy,  were compensated for their HCV while in Scotland and England they simply covered it up!
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I'm 58 now and did a year's course of Interferon alpha from July 97- end June 98. I have nearly all the side effects that you mentioned and in the last few months and up to a year after treatment I made several serious suicide attempts which was something that I never thought about previously. I have the fatigue,  cognitive fuzziness,  joint pain (really bad and it isn't just the joints but muscle pain for no apparent reason too). I am grateful that the Hepatitis C was cleared from my system but I underwent the initial 3.5 mega units and an increase to 9 mega units and,  despite being free of the fear of the virus, I feel that any symptoms I had in the first place have worsened and it's nearly 20 years ago now...I've kinda got used to the fact that I will just have to put up with this but I am under a lot of pressure from the DWP as I am now on ESA and they expect me to be jumping through hoops when it takes me all my time to remember what day it is and appointments are difficult to keep with the fatigue and insomnia.  The only other thing I wanted to say was, do any of you have IBS or a similar condition?  This has plagued me ever since and I just wondered?  Best wishes to all who are stuck with this...and if I remember the box notes from the Interferon correctly most of the above is to be expected in a certain amount of people.
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Alys,
After reading your post, I think I know a little about the things you are experiencing post-interferon. Since interferon (and pegasys) treatment in 2010, I have not been the same person at all - not physically, mentally nor socially. I have felt so bad lately that I have honestly thought it would be better to take a drink after 6 years of sobriety rather than face another day of this pain and discomfort...but not today. Since this treatment in 2010, I have developed an autoimmune disease and some other debilitating issues. I am 62, in relatively good health (heart, etc.), but not like before. My regular blood tests show no active virus, but I often wonder why I feel so bad.  My friends, most of whom are older than I, just tell me its old age.  I do not think so... I just found this site today and wanted you to know you are not alone, for as much as that might help.
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