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Hepatitis C: Post Treatment Issues Community
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Avatar universal

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.
96 Responses
Avatar universal
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.
766573 tn?1365166466
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
1 Comments
They have since taken the website down....wonder why
Avatar universal
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.
1 Comments
I never saw a black box. What did it say?
Avatar universal
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.  
Avatar universal
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.  
1 Comments
I was 3a too & I got cured on my last treatment: 24 weeks of Sovaldim& Ribavirin for 24 weeks. Good luck!
Avatar universal
       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
253566 tn?1219679699
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 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".
1 Comments
Frank, long time no text, I thought I had this beat, as far as lasting sx, well me PCP told me they would not last any longer than 18 months @*^*@ bull pucky. I have an appointment with PCP later this afternoon. But honestly I am starting to think it is a waste of time. There is nothing really wrong with me, remove some cysts from my testicles and I will be fine. All these other issues are just in my head. 29 months post and I cant fake it any longer yes I said fake. Faking that I am okay, I came back to seek answers and I have gotten is a bad attitude, the truth is no one has any answers to what happened to some and not others. To think I did my shoots and took my pills, trusting those I do not with my life, now I say what life!! Food, sex, feeling half way human are out of reach. To hell with the big phrama and those that support them. Should have paid attention to those who had gone before and bailed when I had a chance. Oh well it's been a good time in hell and that's it. Should have listened and paid attention to people like you. But damn if I wasn't just trying to save my life.
1654058 tn?1407159066
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:)
Avatar universal
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.





Avatar universal
  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.
Avatar universal
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.
Avatar universal
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
Avatar universal
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
Avatar universal
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!
Avatar universal
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
Avatar universal
Sounds good...worth a try.:-)
Avatar universal
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.
253566 tn?1219679699
"...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!
Avatar universal
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.
253566 tn?1219679699
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
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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
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