Aa
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.
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.
Best Answer
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.
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
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
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.
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.
? re the " naltrexone". Is this the same medication they use to block optiates from affecting you? I think that is the name of it.
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.
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.
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
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
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