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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?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
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
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