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.
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
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
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!
Yep it is a paper worth looking at.
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 .
I finished 72 weeks of Interferon and high-dose ribavirin in December 2008 and still have side effects. I was put on Wellbutrin when I started treatment and am still on it. I tried to wean off, but my feeling that nothing in life was interesting was so pervasive that I went back on it. About 6 months after treatment ended my thyroid gave up and I've been on Synthroid since then.
Besides the memory loss, fatigue is my worst enemy. My memory problems are typically not being able to call up particular words or names and losing my train of thought. My fatigue was something where I always felt tired and napped whenever I got a chance. I finally started on Adderall, and it mad a big difference. At first I didn't like the jittery feeling from it, but with dose adjustment it's a lot better, and I feel it is very beneficial.
I've read up on many of the Nootropic supplements that are out and am starting on Noopept soon to see if my cognition improves.
Lastly, and I'm sure that many will echo the sentiment, if I had known that the new drugs were going to be so effective I would have delayed treatment and spared my brain from 72 doses of Interferon.
Besides the memory loss, fatigue is my worst enemy. My memory problems are typically not being able to call up particular words or names and losing my train of thought. My fatigue was something where I always felt tired and napped whenever I got a chance. I finally started on Adderall, and it mad a big difference. At first I didn't like the jittery feeling from it, but with dose adjustment it's a lot better, and I feel it is very beneficial.
I've read up on many of the Nootropic supplements that are out and am starting on Noopept soon to see if my cognition improves.
Lastly, and I'm sure that many will echo the sentiment, if I had known that the new drugs were going to be so effective I would have delayed treatment and spared my brain from 72 doses of Interferon.
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.
do hope we can give you a bit of support and a place to talk openly.
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