Hepatitis C: Post Treatment Issues Community
Post Interferon Syndrome
About This Community:

This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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.
Blank
Avatar_m_tn
I have been through this for years. Did 20 months high dosage inf and then another year+ Peg/Riba. Could not move for years afterwards. Read a thread on this board about anti oxidant therapy. Some doctor in NM was using alpha lipoic acid,selenium and milk thistle along with B vitamins and D vitamins,whatever was needed according to labs. I read about it and figured it was better than doing nothing. Didn't think it would work but went to GNC and got a bottle of ALA and started doing 900 mgs a day. Within a week I started to move again so I added the other supplements. 400mg Selenium,900 milk thistle. Went to see the doctor and he added in low dose naltrexone which should straighten out your immune system and stop the symptoms. Best of luck.
75 Comments Post a Comment
Blank
766573_tn?1365170066
Sorry to hear how debilitating things have been. I finally figured one of the many things going on with my hands might be carpal tunnel. During sleep I would wake myself up with severe burning and numbing and no control and it freaked me out. After researching I discovered stretches I can do things I can do different and splints I can wear when doing certain things. It is a major hassle though. I think I developed mine via repetitive motion. I developed an interest in landscaping while treating and foolishly (and compulsively) trimmed a huge hedge with these cuisineart scissors that worked for nothing else.  I think that is what got the ball rolling in my case.

At least the future for treatment looks promising with Interferon-free meds. I encourage people to treat even though I understand the risks of the meds. I was skimming through some pamphlet while waiting for the doctor and I was surprised to see the black box warning right on the cover. I don't remember it being that apparent the first time I treated. I don't know. Maybe I just didn't pay attention. I just wanted the virus gone I guess. Plus there was only one treatment option available back then so the issue was really 'when' and not 'if'.

Anyway I hope all this works out for you and you find a way to get your life back. Best of luck.

http://www.isicr.org/pdf/IFNprimer_ISICRApril_2006.pdf
Blank
Avatar_f_tn
Thank you for the message....Yes, the black box...didn't have that luxury here in the UK, but have read it since. The treatments here run a bit behind the U.S. due to funding but grateful I'm SVR tho, but wish they had studied it longer using us as guinea pigs with a wait and see policy....
Like all stats, it looks good that they have 'cured' you but dispense with you as soon as that target is reached...I have not been followed up by my dispensing hospital..but I think that will be my next step to get referred back to the specialists so they can update my records and maybe study what I have been going thru..you never know unless you push it.
Blank
Avatar_m_tn
I did read that updates were done to warnings.  That's a good idea to get
a check up.  You feel so sick for such along time, you forget maybe it
might be something unrelated. I found out I had an infection after treatment
I didn't know I had.  Felt much better after medication.  
Blank
Avatar_f_tn
dont really know what to say..im 31 and have 3a..going to the gi in the morning  to start treatment..dont know how im going to do all this.  
Blank
Avatar_m_tn
       I am a 52 year old male and I finished the Interferon/Ribavirin treatment on May 31st of 2012. I am 5'4" tall and I have weighed 155 lbs since I was about 15 years old. The treatment was rough but fortunately it only took 12 weeks and the Dr. told me I was done with the medicine and completely hep.c free.They said it would take up to 12 weeks to get over the medicine. During the treatment I had lost 30 lbs and I was looking forward to gaining it all back. In the second week of October (approx. 20 weeks after I had completed the medicine) I started feeling better, a lot better. All my strength had returned as did my appetite I was my old self again and I was so happy I couldn't use strong enough words to explain it. I had just gone at least a year and a half of being Hep C sick and then finished that bout of illness with the Interferon treatment. so I was on cloud nine. I started working out with weights I re-arraigned the garage I even had an interview for a job which went really well and I thought that I had landed the position. But, I am finding out that the universe is a funny place. On the 13th day since I had started feeling better it all went south.  I woke up and I felt like I had the flu.  Everything hurts, I was ridiculously weak again and my thinking was so foggy that I had trouble with just finishing a sentence. Everything hurts especially my joints. Since that day walking is a struggle and if I try to walk up steps or an incline I really pay for it with severe pain in my legs.The place that I had the interview called and said that they hired someone else for the position. I told them that if he did not work out to call me. I still haven't heard from him and I still feel like a bag of dog crap. I had no idea what was wrong and the Dr. said that I was still hep c free. Then a friend of mine told me that her aunt's friend was involved in a class action law suit with the makers of interferon because it had a horrible side effect that was making people feel even more sick than the hep c. I found the lawyers website and he is not taking anymore clients for the lawsuit.  I am looking for help in both the lawsuit and some physical relief. Any suggestions would be welcomed.

Thx
Thor
Blank
253566_tn?1219683299
Good luck with that follow up with your dispensing hospital.

Mine started well but ended very poorly. Like you, there was zero follow thru after the "cure". I was really shocked as the local GP was at a loss what to do with me and all my difficulties.

I finally did get a GP with some brains and made an appt for a follow up. I had treated with the #1 University Liver Center in the USA. He kinda knew the Liver GURU. Took a year to get an appt but first got an appt with his nurse (six months for that waiting list).

When I ticked off my list of issues two years post treatment/"cure" her mouth just dropped and she actually apologized for destroying my life! We would discuss something and she kept saying that again and again "I am sorry we destroyed your life!" I kept thinking that youre not suppose to say that but again thinking WoW! thanks for being so honest.

The GURU would have none of it... it had nothing to do with his treatment! He literally passed the buck! My anemia, messed up iron, and other crazy blood work was all due to something else. I must be bleeding internally. I dared him to bet me $10. He refused and forced me to do a double scope. He did the scopes himself and found nothing!

My chronic fatigue/post interferon syndrom (syndrome) is so debilitating the past two years I cant describe it... but I try to stay positive.

I have a new GP and an appt with him in a couple weeks. Another member has recommended that I look into Low Dose Naltrexone LDN which will be part of a very long, indepth interview with this new guy... as well as Vyvanse. A fight I have been on with the local insurance - to get back on for that two years. The only stimulant that seems to work for my chronic fatigue! They have forced me on Amphetamine Salts ER 20mg which is like a sugar pill and has started to give me nightmares! My psychiatrist disagrees. Another idiot!

Sorry for the rant.
Best of luck with your trip thru this "cure".
Blank
1654058_tn?1407162666
I am wondering what stage your liver disease is? I SVR'd last May and still battle fatigue. I also have to rest a lot. I'm chalking it up to end stage cirrhosis that hep c left me with. I'll be watching your posts. My best to you today. Heading for work. Chugging along. Karen:)
Blank
Avatar_f_tn
Apparently, none.....tho I haven't had any investigations since 2007 as discharged from my G.I. care. I moved cross country and feel it is time to have a check up to see if all is ok.

This is what the main issue is for me...why if my liver is ok...why on earth am I still having bouts of post interferon symptoms? Chugging along is a good word....never quite on full steam but functioning like a victorian steam train.

Reading some of your responses I can relate so well to the attitudes of the medics...even now this is taking me time to type as my brain is groggy and slow and I have to stop and let my thoughts ferment before my hands respond....very frustrating. It is like when your television gets that digital blip and everything freezes and I can't think straight and it is all juddery.

Now I have stopped thinking all together...laters.
Alys.





Blank
Avatar_n_tn
  I am female 55yr old.  Completed 72 wks of hell treatment Oct 2011. I know exactly what you are going through.  I am now more than a year post treatment and still having chronic fatigue, joint pain and brain problems.
I had side effects during treatment as expected. But continued through treatment with the hope of "getting back to normal" after it was over. I am still waiting but not much has changed.  Only thing is I kind of adapted to my situation. I dont try to force myself to be physically active, I have to pace myself and rest and recoup.  Same with the brain, keep mental activity to a minimum, keeping it simple, if I try to multitask or handle too much info. brain function get worse.
Blank
Avatar_n_tn
also joint pain in hips gets bad.  I was not able to return to work, even though
they held my position until treatment was completed.  I cannot possibly work in this condition.  I was a medical laboratory technologist before treatment.
Blank
Avatar_f_tn
What you are describing is exactly what I am experiencing, though I didn't treat with interferon. I have cirrhosis.
I do feel much better than I did pre and during treatment (7977/Ribvirin) but  I need a cane to walk most days and I am in a lot of pain too.

I do believe that some people suffer from Post Interferon TX, but I think cirrhosis can play a part in it, as well.

I wish you all the best
Blank
Avatar_f_tn
My liver? apparently was healthy?...but that was 9 years ago. I will be getting my GP to refer me to a specialist for a check up tho. I did have a biopsy when diagnosed in 1993...and they said it had an granuloma type growth???

When they discharge you it is like being put in a little boat and pushed back into the unknown.

Yes cirrhosis can effect many functions of the body, brain, joints, muscles due to the role of the liver...it does have 500 of them so it stands that any damage is going to effect you.

I pace myself but I feel my body and brain give me no choice but to which is frustrating.

I have been looking at academic papers about the effects of interferon on the brain network and the central nervous system...few have been done but it does indicate that cognitive changes and nerve involvement. I think that the new treatments seem to avoid this but only time will tell suffice to say, those of us who have had toxic Peg/Rib and sensitive to its use and remain with irreversible damage should shout loudly and make it known.

I know how i feel and i know what i was like before i put these drugs in my body...i am not the same and have not been since 1993 when interferon entered my life.

I hope you all keep well and carry on....xxxx
Blank
Avatar_f_tn
Just found this study Published March 13th in Australia...

http://www.tandfonline.com/doi/abs/10.1080/13548506.2013.774429?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed&

cost £23.50 to download the complete article..but this is indicative that some medics are taking notice!!!!

I plan to down load this and take it to my GP and ATOS assessment for the DWP so they know I am not faking my symptoms.

BOOM!
Blank
Avatar_m_tn
I have the same exact thing and i mean exactly
I know how you feel  its frustrating and the doc have no clue as to what the problem is so we try to cope as best we can
Blank
Avatar_m_tn
I have been through this for years. Did 20 months high dosage inf and then another year+ Peg/Riba. Could not move for years afterwards. Read a thread on this board about anti oxidant therapy. Some doctor in NM was using alpha lipoic acid,selenium and milk thistle along with B vitamins and D vitamins,whatever was needed according to labs. I read about it and figured it was better than doing nothing. Didn't think it would work but went to GNC and got a bottle of ALA and started doing 900 mgs a day. Within a week I started to move again so I added the other supplements. 400mg Selenium,900 milk thistle. Went to see the doctor and he added in low dose naltrexone which should straighten out your immune system and stop the symptoms. Best of luck.
Blank
Avatar_f_tn
Sounds good...worth a try.:-)
Blank
Avatar_f_tn
http://www.medhelp.org/posts/Hepatitis-C/is-there-a-betterbrand--of-ALA/show/1226074#post_5611927
Just to add on to what Xrles said about ALA. Here is a link to HepC researcher who used to be on the forum. He discusses it's uses extensively.
Blank
253566_tn?1219683299
"...Went to see the doctor and he added in low dose naltrexone which should straighten out your immune system and stop the symptoms. Best of luck."

low dose naltrexone has been recommended to me by members on this site for PIS. I will be meeting a new GP in a couple weeks.

What is the dose your doc wrote you for ldn? 4.5mg caps (from the site).

Did your doc run test to see if your immune system had some issues? The only issues we can find with blood work is that my iron is a real mess and that causes the chronic fatigue syndrome!

I just did a google and discovered that ldn has its own site. Not sure if some meanie will remove this post sooooo you can find it doing the search for low dose naltrexone it comes up as an org and can be found as "lowdosenaltrexone" without any of the spaces. There seems to be a forum but from their own description it is not very active... I just joined.

There is a lot of interesting info, even some news reports... for anyone interested in this seemingly very effective med with little sides - very inexpensive!

Lastly, must use a compounding pharmacy - and they have a list of recommended ones... as well a filler NOT to use and the approved ones!
Blank
Avatar_m_tn
there is a book named The Promise of Low Dose Naltrexone which can explain the usage and diseases that it is used for better than I can. I use 4.5 mg and weigh appx 190. The reasoning is the interferon makes the immune system hyper active and it does not return to normal after treatment. The ALA  deals with the free radicals. The B and D and multi vitamins boost your energy. The LDN boosts the endorphins which normalizes the immune system. That's the theory and it worked for me.
Blank
253566_tn?1219683299
Thanks for that Xhrles.

I read a docs review of the book on Amazon and he recommended the site I posted above... lol.

I think your explanation above was excellent and with my brain fog reading a book is pretty difficult...

Thanks again
frank
Blank
Avatar_n_tn
Hi. I have been reading these forums for several years now. My husband went through 12 months of Peg/Rib tx in 2004. It has been almost ten years and he has steadily been falling apart since tx. He has had severe joint pain to the point of not being able to hold a steady job. He cannot get out and be active with his family. The doctors have tested for arthritis, results come back negative every time. Blood work always turns out normal. He is beginning to think he is crazy because no doctor believes him! He is always tired. The mood swings are horrible. For those of you who are suffering the joint pain, have any of you had any actual diagnosis of what it is? What can help it? I know someone mentioned doing anti oxidant therapy. Will that help? I cannot stand seeing him in constant pain. He won't take much pain medication because he says it defeats the purpose of going through liver tx because the pills are bad for your liver! Please help. He was never like this before tx and I have no doubt that the tx is what caused the problems. We have been looking for some sort of lawsuit against the drug company, but to no avail. Any suggestions would be greatly appreciated.
Blank
Avatar_f_tn
took all my symptoms to my GP..she is very supportive. I said to her I think I have interferon induced fibromyalgia...she agreed. So now I have the diagnosis on my medical file. A relief that someone actually listened and she has referred me off to a specialist and pain management clinic. Further research has led me to discover that depression is induced as well all due to the cytokine changes of the brain...well not surprised really. I'm starting to wonder whether I should take on a medical legal case for the damage to my life. I would of rather lived with active hep c and managed it naturally rather subjected my body to 3 bashing of interferon.
Blank
Avatar_m_tn
I am a 60 years old male, contracting HCV in 1961 from a blood transfusion.  Of course, I was unaware of having this disease until I was rejected for donating blood in 1986 once blood screening began. I'll have to live with the fact that I must have donated about a gallon of tainted blood over the years.

I too took the Peg/Rib treatment.  Actually, twice, each time for a year. I responded well, but the HCV came back after treatment stopped. Like all of you, the treatment was hell.  The second round took place in 1997. The craziness (to which I am predisposed) and suicidal thoughts and physical symptoms got to a dangerous level, so I stopped after 12 months.

It is 16 years later, and I still have many side effects. I just went on disability.   Brain fog, exhaustion - but strangely hyper at times, aches, tendency to want to take many naps but ALWAYS tired, lousy nights sleep, feeling that a truck hit me, hard to go out with friends because I tire so easily.  My Gastroenterologist swears I am fine, and does not want to hear that these side effects could be from Peg/Pib. I am grateful to all of you for sharing. I don't feel like I am alone in this.
Blank
Avatar_m_tn
I have had some extreme problems in the past 10 years either due to HCV (since at least 1979) or due to treatment (or both).
Difficulty thinking, focusing, remembering, reading....  sleep/insomnia, joint pains, intestinal issues. I have seen doctors for 10  years+....  nothing wrong with me.

Somewhere arounf 2008 I found that high dozse vitamin D (4000 IU/day) for 2 to 3 weeks gave big improvement and lessened the intensity of my symptoms. I dropped to about 1000 to 2000 IU/day since. A couple of years later research showed that those with HCV are prone to be Vit D Difficient.
I recently found, after some research that Vit B12 may also help me, and it has!
I recently compresses a vertebra after falling on my butt. THAT got the doctor's attention as a "healthy with HCV male in his mid fifties should NOT be compressing 2-3 vertebra by falling on his butt.  I was diagnosed as being OSTEOPENIC (Low bone density). I immediately thought of how that vitamin D helped me when I was feeling worse and have added calcium supplements to my vitamins.  Doctors have sent me to an endocrinologist so thath they might find out WHY I have bone density issues (and maybe some of the other symptoms as well).

I still have HCV, though I am in a trial right now and have been UND since MAy 2013. My energy and mental function have improved  and I thank the Vit D and B12 for helping.

I strongly urge you to consider vitamind D, calcium supplements and Vit B12. See if it helps.

Best wishes.
Cheese
Blank
3093770_tn?1389742726
Hey Cheese,

Only a note on the calcium. You need to be very careful with that.

For example the only danger of very high vit D doses is that in fact are promoting also calcium absorbtion and it can result in calcium deposits.

That is why it needs to be checked and either take only the vit d or if calcium goes to high, stop vit d supplementation
Blank
Avatar_m_tn
I know, hypercalcemia.  I have been checked.   The recent visit to the endocrinologist has confirmed that I SHOULD be taking at least 2000 IU/day vit D and calcium supplements.

i am a good example of what HepC can do in terms of vitamin D requirement and bone issues. I share what works for me with others in the hopes that they may look into their similar issues with a doctor and maybe come to a solution.

Cheese
Blank
317787_tn?1373214989
Hello while I have been taking many of the supplements mentioned above, there is another thing that I think has helped me and a few other people I told on here.
It is called NADH.  I have been taking it   for many months, it has helped my brain fog.  I also take vit D calcium, Magnesium zinc for pain.

You can look up the info by looking at nadh.com.  Yes, they sell something, I don't buy from them, but they educate you on DNA and RNA repair.

It is something to look into, I hope it helps someone

My best
Dee
Blank
Avatar_m_tn
Hi   Ive just found out that I have bone degeneration and I have been referred for a MRI scan.Two of my discs are eroding and hitting my nerve . I subsequently have pins and needles in my left arm and in certain parts of my legs. Really worried about this as I wasn't warned about this side effect. If there is any information out there could you forward me some information   Martin
Blank
Avatar_f_tn
Yes, my husband has experienced many symptons and they continue even though he had to stop treatment in January of 2006 due to an allergic reaction to the drug.  He was completely blind for one year and since 2007 he now has vision in just the upper half of his eyes.  It destroyed the retina and the optic nerve is gray, due to a stroke behind the eyes.  Mind you he complained to the doctor in October of 2005 and they sent him to an optomotrist and his hep c doctor told him to continue with the treatment as the eyes would go back to normal after treatment was completed.  The treatment caused low vision, joint pain, tremors, lesions on his brain (like MS), memory and short term memory loss, autoimmune disorder, lupus and psoriasis, anxiety etc.
Blank
Avatar_n_tn
Been there and done that, almost same exact thing. I took Pegasus and Ribavirin for 12 months in 2004/05 and my life has fallen apart since then. Joint pain, fatigue, mood swings, brain fog, insomnia....you name it. I just read something interesting in a couple of posts before yours. It seems Naltrexone 4.5mg per day (the person weighed 190 lbs.) seemed to help desensitize the immune system. Check Wikipedia under Naltrexone under the heading other uses, it may help. Good luck.
Blank
Avatar_f_tn
Hope readers are well as you can be. I have been juicing, with good results..I did get a diagnosis of fibro and decided enough was enough...so i'm on the road to treating myself. Have taken myself of 20 years of antidepressants, still having brain zaps but have ordered  5-HTP to remedy this, my joints still hurt but not to the point of having to take painkillers, in fact, haven't felt the pain level to take them for 8 weeks..so not bad. My head is clearer and enjoying faster thinking, I can go thru most days with out a nap and my energy levels are far higher than they have been for years.
I cut out all processed foods, no cows milk, no white flour, sugar etc..bread, not frozen foods, not baked stuff unless I make it, I juice in the first part of the day and have a healthy meal in the evening, then a big lovely smoothie for late evening...banana based which helps me sleep.
Now I realise this is not a cure but heck! what a difference! I feel better, lost 25lbs, people even strangers tell me I look fantastic...and i must admit I feel great...tho still ache but it is manageable.
I also changed my mind set which is key...not to think like a victim, to face the challenges and take control of my life and stop taking the meds they think will make me better..and find healthier ways of treatment...I hope this inspires someone...Try juicing! I'm planning of becoming a Juice Therapist to encourage others to have a healthy lifestyle.  
Blank
Avatar_f_tn
I have been rubber stamped disabled today...Pain management Consultant and the new Fibro critera assessment deems me Disabled. So at least it is now medically confirmed, in my records and hope that ATOS will leave me alone to get on with my life...next step....lawyer and see if I can get compensation for being put on a drug that I believed caused the fibro.
Blank
Avatar_f_tn
  Good for you, for Juicing, Freeman:   I was given a Vitamix blender, as an end of treatment present, and it has really helped my Recovery, from the 28 wks I did on Triple Tx, with Victrelis.
   I usually make a Smoothie with my fav fruits,and then add flax-seed, or chia seeds, maybe sun flower-seeds, pumpkin seeds, etc.  I have noticed my joints hurt much less since I have been doing this.
   I also have noticed that riding a bike and short walks, also help, with rebuilding.  My hips had been popping out since the end of my Tx,and for about 6 months post, but that is now better.
   I'm glad you got the diagnosis you deserved, and good for you, for avoiding the pain-med trap
  
Blank
253566_tn?1219683299
Agree on the juicing... just wish I was in a bigger city where it was a bit more affordable to get a variety like when I lived in San Francisco where it was soooo cheap and plentiful!

Congrats on your rubber-stampimg. Not sure what the process is like in the UK but what I learned from my advocate/lawyer was - in any medical situation or in your case history, as soon as you walk thru the door and someone ask "How are you today?" Never casually respond "Fine."! Even if it is to the receptionist start telling your real feelings about your pain and how horrible you feel, etc.

It takes a bit to get use to but soon enough it becomes very comfortable.

I am not sure what must be proven over there but in the USA I only had to prove that I could not work a 40 hour week. This could be because I could not stand for 8 straight hours or stay awake all those hours etc... These were the points my lawyer wanted my docs to have in my records.

When I was finally in front of the Judge my medical records were so enormous they had to be wheeled in on a cart as a human could not carry them, ugh! And we were still waiting for some new records to arrive from my psych, lol.

Hope things go very smoothly for you,
frank
Blank
Avatar_m_tn
Hi - I read your post today, and thanks for sharing your success with us.  I too had the Peg-Riba tx several yrs ago, and developed several negative long term post-treatment side effects..brain fog and depression, lupus, fibro, psoriasis, on and on....I don't wish to bore anyone with all the details.  I'm going to try your advice and regimen - thanks again!
Blank
Avatar_m_tn
Your post, beginning with "I'm 54..." I thought was written by me! It sounds exactly like what I am experiencing! I hope you feel better. It is good to be cleared but very hard to lead a life that had.  I have often said that along with the virus, something inside of me died. My GP has never made a connection to my symptoms being related to HCV treatment. I'm the one who was mulling this over just last week (duh...after so many years I probably should have thought about this a little more?).  I will contact the Gastroenterologist who oversaw my treatment. Maybe he will have some info. Thanks for your post.
Blank
747988_tn?1396540478
Very glad to hear you're feeling better,good food is always the best medicine xxx
Blank
Avatar_m_tn
When you say a low dose of nalrexone, what is a low dose? I'm asking because I completed tx march 2011 and am now convinced I have post interferon syndrome. I am worthless, can not think or function and feel like crap most days. My quality of life is zero. I was a RN but have lost my job and truthfully can not get it together enough to hold down a job. The loss of income has been devastating. Unfortunately, I turned down my Drs offer to "get me disability" while I was ON Treatment and have spent the last year not being able to even complete the SSD application as It is just too overwhelming. Although I am WORKING on it. While in tx I was prescribed high doses of oxycodone...15mg 46x/day in addition to 20 mg oxycontin sr 2x/day. At completion of interferon tx I chose to stop the pain meds as I was told I'd feel better within 3months and didnt want to be physically Dependant, which anyone taking those doses for over a yr inevitably becomes. So I opted to take suboxone rather than deal with the hell of detoxing. Ihave been u able to get off the suboxone, it is a combination med and contains 0.5mg of naloxone. Which is a low dose. My symptoms are getting worse NOT better. Every time I try and come off I feel horrible and keep being told its all in my head. Believe me it is not. I'm wondering if that is why I feel better on higher dosages because the naloxone dose is higher and maybe I just need a Rx for naloxone. There are days I just want to go back on the pain meds 1 because I'm in sooo much pain all the time and 2 I generally just felt all around better, even my mood and anxiety were less. I never suffered from sever MENTSL health issues or cognitive issues in the past and have no history of drug addiction. As I stated I chose suboxone rather than co tinue to take pain meds I was told I would no longer need. I also feel like ive lost 100 IQ points and have developed ADD. I'm just so tired all the time debilitatingly so. If I have an appt to attend I have to get up 4 hrs prior just to get myself able to shower n dress. Ive gained back 60# of the 25# I lost during g tx even tho I barely eat. The weight gain just keeps coming. My hair that fell out grew back a little but now is falling out again. I have muscle aches and joint pain so bad sometimes I can't move and feel like I'm 95 I'm only 46. Yes I'm still non detectable or cured but feel WORSE now than on treatment ( prob cuz the opiates "kept me going"). I'm sickmof being told I'm just depressed or have fibromyalgia because they can't find anything or worse treated like a drug seeker. My PCP and then rheumatologist put me on the oxys. I was tested positive for the gene ankylosing spondylitis as was not goi g to be allowed entry into investigational drug study and my rheum dr "cleared" me saying I was positive for gene but did not have the disease and bam during tx began getting gout attacks where I wld wake up screaming with locked joints and pain during the night and exacerbation of a disease she said I did not have...well now I do. These are just SOME of the symptoms that are worsening not improving as time goes by. NO one understands, even my husband thinks I'm just being lazy or psychosomatic and our relationship is being ruined by the resentment t he feels toward me over the loss of our income and financial ruin he pretty much blames me for.
Blank
Avatar_m_tn
A low dose is 3mg or 4.5 mg per day. This should normalize your immune system. More important for you is to get your energy back so can function.
Get some Alpha lipoic acid in 300 mg caps or tabs and take 2-3 per day. One in the morning and one in the evening and at mid day. My energy started to return after a week and I had been fatigued for 10 years at that point. You can get it at GNC or online. A good multi vitamin and a good B vitamin will also help. I am not familiar with suboxone but you need to know that naltrexone is used in higher doses for opiate addiction and will nullify the pain killing effect. Take it an hour or two before bedtime. google ldn for a website for more info. If you are on opiates then you might not want to use it. Do the ala and vitamins first. When the ala and vitamins got me on my feet a good friend took me to hot yoga. It's not for everyone but it has burned the fog out of my brain and gotten my weight down. If you can do it then you'll feel better about life. The endorphins help the immune system. I've spent a lot of time with nurses over the years and wish you the best. Write me direct if you need to.
Blank
Avatar_m_tn
I am no longer on pain meds. I have been off them since completing tx 3/11. I take a combination medication that has 0.5mg of naloxone in it, which obc is no where near 2-5mg. I will try your suggestions. I am just so relieved in a way to finally have an answer to "why do I feel like crap ALL the time. I questioned maybe the interferon but I dont know why I didnt Google it sooner???..Still, I dont hold much hope for the docs or SSD buying it...I mean it has literally ruined my life..and from the sounds of it, many others. Thank you again for the input.
Blank
747988_tn?1396540478
I read this on a CFS site and was shocked at the 30% figure quoted here- 'This was a study done by a hepatitis specialist who was treating hepatitis C with interferon," a protein that is part of the body's anti-viral response...."Seventy percent developed marked fatigue, and 30 percent developed chronic fatigue syndrome. So it was the interferon treatment that caused the CFS, not the actual virus circulating in their system....The CFS is the immune response from an infection." This finding is consistent with the idea that the symptoms of CFS could be precipitated by an immune system in overdrive.'

Blank
747988_tn?1396540478
this is about research into ME/CFS at king's college hospital-I was very surprised they expect 50% of patients to experience persistant post treartment fatigue.
apologies for the bad cut and paste!

this as a model of CFS, in our three-year project we want to:
1) assess a cohort (n=100) of patients throughout the IFN-alpha treatment and at 6 months after cessation of treatment, and identify the group who develop the persistent post-treatment fatigue (expected n=50 [ie half]);
HALF??? DID I READ THAT CORRECTLY???
2) validate this model, by comparing the clinical and biomarkers profiles in patients who experience persistent post-treatment fatigue, patients with CFS (n=50), and healthy controls (n=50);

3) identify the risk factors and the biomarkers trajectories (before and during IFN-alpha treatment) that identify those patients who will later experience persistent post-treatment fatigue.
Click to expand...Perhaps unsurprisingly given the study is based at Kings', they will be looking at psychological risk factors for fatigue too:


We will measure: fatigue, mood, and other CFS-like symptoms; medical and psychiatric history; childhood and recent stressors; social support; illness and treatment perceptions; physical fitness; quality of life; and occupational function. Moreover, we will measure blood biomarkers: serum cytokines; cortisol at awakening and during the day; and leukocytes gene expression. The project will build onto an existing pilot study in HCV patients, an established collaboration with Liver Units across London, and the research-led clinical service for CFS patients at King's College Hospital. "Thus, the project has great chances of success."
Click to expand...As before, this is not studying CFS directly but it could prove an intersting model, that would then need validating in CFS patients. One of the strengths of this approach is that they can collect prospective data on HCV patients pre-IFN-induced-fatige. However, the equivalent data for CFS patients can't be collected in the same way as they are already ill and fatigued so the comparison won't be direct.

Blank
Avatar_m_tn
I did 11mo of peg interferon and ribavirin 9 years ago.  The treatment was hell. I was on 13 different meds just to make it thru. Worked the whole time. My hepatologists talked me into treatment because he said at stage 1 SVR was better chance.  I permanently lost 25%  of my hearing during tx and developed tinnitus. I developed ulcers, lost half my hair, lost 35 lbs,   Depression became very severe, and pain was awful.  I am SVR to this day which I am grateful for but these are my remaining side effects 9 years later that we're not existent prior to treatment: mood swings, memory loss, trouble concentrating, low stamina and post exercise malaise, low ferritin, lowered immune system, insomnia, hypothyroidism, acid reflux. I was told time after time none of thes symptoms were from the drugs and doctors had no explanation.  I continue to work but can only work part time then spend the rest of the week recovering. I'm a registered nurse and it makes my life difficult .  I wish I knew the extent of the long term affects and how they would change my life prior to treatment.  I am 57 years old.  
Blank
253566_tn?1219683299
It is just terrible to read of your lingering sides but you are certainly not alone.

I treated for 72 weeks on the same poisons as you and have many of the same issues after these many years. I wasn't working at the time so was automatically processed for disability. It was another horrible process but after two judges I finally won (after being "cured") from all the disabling sides of treatment!

After the first year off treatment I gave up on the Liver gurus and was lucky to have a great local med group who believed the issues came from chemo & riba! We treated the symptoms - and a few years ago the Mayo Clinic had defined us long timers as P.I.S.!

This helps so much! If your doctors still think your issues have nothing to do with treatment find new doctors! If you are near a Mayo try to get in there.

Treating a syndrome is no fun but there are things out there to help!

Best of luck
Blank
Avatar_m_tn
Frank and Riverchase,  I posted here previously - back in August - but to briefly elaborate:  I did peg/riba for 48 wks nearly a decade ago...and (to this very day) have nearly all of these same issues.  I too am thankfully (still) svr.  My best guess is that I'd had the hcv for 10-12 yrs by the time it was discovered in the liver bloodwork of a thorough physical exam.  And although my liver was already heavily scarred/fibrotic by the time I began the treatment, functionally it was still strong...and thus was able to withstand the tx and sustain svr status.  But what a price to pay!...I've never felt the same since. For years I'd chalked it up to 'just getting older' (I was 50 at time of tx) - but of course now I know better.
Blank
Avatar_f_tn
Is it possible to still have issues caused by the meds 6 years after stopping or is that too long?  I see a lot of 1 year answers and comments but i was just wondering if you can have Post Treatment 6 year later becuase my husband also has HCV and we did a round of treatment together when we first met 9(ts how we met so at least the hep was good for something!!!!) and he still has issues that started when we were taking ribavriin/interferon and a third med for a study.
Blank
Avatar_f_tn
? re the  " naltrexone".  Is this the same medication they use to block optiates from affecting you?  I think that is the name of it.
Blank
Avatar_m_tn
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.
Blank
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
Blank
Avatar_m_tn
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!
Blank
Avatar_n_tn
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.
Blank
Avatar_n_tn
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.  
Blank
Avatar_m_tn
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
Blank
Avatar_m_tn
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.  
Blank
317787_tn?1373214989
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.  
Blank
Avatar_m_tn
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??
Blank
Avatar_m_tn
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.
Blank
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.
Blank
Avatar_m_tn
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 (adderrall), 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.
Blank
Avatar_m_tn
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  .  
Blank
Avatar_f_tn
Yep it is a paper worth looking at.
Blank
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!
Blank
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
Blank
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
Blank
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
Blank
Avatar_n_tn
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
Blank
Avatar_m_tn
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.
Blank
Avatar_f_tn
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
Blank
Avatar_f_tn
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.
  

Blank
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.
Blank
Avatar_m_tn
"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.


Blank
Avatar_m_tn
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/




Blank
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.
Blank
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!
Blank
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
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C: Post Treatment Issues Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
2 hrs ago by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Hepatitis Answerers
1815939_tn?1377995399
Blank
pooh55811
317787_tn?1373214989
Blank
Dee1956
DC
7469840_tn?1409849436
Blank
hepc4Sandi
San Diego, CA
223152_tn?1346981971
Blank
frijole
Midland, TX
Avatar_f_tn
Blank
candyce1953
Avatar_f_tn
Blank
cheflady
ENGLAND, Other