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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.
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".
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.
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:)
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.
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.
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.
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.
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.
they held my position until treatment was completed. I cannot possibly work in this condition. I was a medical laboratory technologist before treatment.
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
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
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