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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.
Best Answer
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.
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Avatar universal
Got hep c from blood transfusion in 1981. 28 years later I took  treatments for 53 weeks. Am free of virus, but what a price to pay!! I too have much of the same symptoms as most of you ( extreme joint pain, fatigue, etc. ) Have tried talking to several attorneys, but to no avail. Nobody seems to care. If anyone knows of any legal help--I would be interested.  This disease took my life away from me. I was 32 years old at the time.  Could not find employment. Going from a dean's list student to being a carpenter has not been easy. My income has been miniscule, so now my social security reflects this. I am looking for HELP!
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Avatar universal
As of Jan 2013 I complete my 5th 48 to 52 week course of Interfuron with various other drugs. 1997 to 98 straight Interfuron Alpha 2b for 52 weeks, 1999 to 2000 Interfuron Alpha 2b with 6 ribiviron pills daily for 52 weeks, late 2001 to 2002 I was a study patient on interferon (I think it was gamma),[approx. 2001 I was also diagnosed with cirrhosis of the liver stage 3 of 4] 2004 I was on Peg interferon for another 48week course, but had to stop working at that time because I had deteriorated so much in that 8 year duration health wise as well as psychologically that I was no longer able to work.  Then, the most recent 48 week course was from February 2012 thru January 2013 which was Interfuron, teleprivar and ribavirin.  This allegedly cured me as the virus in no longer detected in my blood.  However, the damage to my body and quality of life is like an aftermath of an f5 tornado.  I take two days to recoup any time I go anywhere, and the only place I go is to family where I can sit or lay down when necessary.  I look forward to gaining insight via this group forum.. it's the first time I feel I'm in a place where people understand and speak my language health wise.
Helpful - 1
Avatar universal
Alys,
After reading your post, I think I know a little about the things you are experiencing post-interferon. Since interferon (and pegasys) treatment in 2010, I have not been the same person at all - not physically, mentally nor socially. I have felt so bad lately that I have honestly thought it would be better to take a drink after 6 years of sobriety rather than face another day of this pain and discomfort...but not today. Since this treatment in 2010, I have developed an autoimmune disease and some other debilitating issues. I am 62, in relatively good health (heart, etc.), but not like before. My regular blood tests show no active virus, but I often wonder why I feel so bad.  My friends, most of whom are older than I, just tell me its old age.  I do not think so... I just found this site today and wanted you to know you are not alone, for as much as that might help.
Helpful - 0
1 Comments
I really thought I was alone in this. I have been trying to straighten out the damage done by my experience with the Pegasus interferon treatment. I was forced to retire after my taking it in 2012. I couldn't function, my intestines were damaged, I had fatigue, anxiety, panic attacks, and my blood count itself was to the point my Dr.was considering full blood transfusion. Before even with hvc I had been active in hiking, rock climbing, and I worked for UPS. I was planning on becoming a full time driver and finally have a future. With the damage that treatment did to me physically and mentally, I didn't want to live, daily I would fight suicidal thoughts. Only my belief in Jesus and the thought of what it would do to my children kept me from carrying it out. I am still fighting, 6 years later. On a fixed income of Social security and a small pension I can't even support myself without my children's help. I don't know what I am going to do. I am a 65 year old woman who is struggling to just make it.
Avatar universal
I'm 58 now and did a year's course of Interferon alpha from July 97- end June 98. I have nearly all the side effects that you mentioned and in the last few months and up to a year after treatment I made several serious suicide attempts which was something that I never thought about previously. I have the fatigue,  cognitive fuzziness,  joint pain (really bad and it isn't just the joints but muscle pain for no apparent reason too). I am grateful that the Hepatitis C was cleared from my system but I underwent the initial 3.5 mega units and an increase to 9 mega units and,  despite being free of the fear of the virus, I feel that any symptoms I had in the first place have worsened and it's nearly 20 years ago now...I've kinda got used to the fact that I will just have to put up with this but I am under a lot of pressure from the DWP as I am now on ESA and they expect me to be jumping through hoops when it takes me all my time to remember what day it is and appointments are difficult to keep with the fatigue and insomnia.  The only other thing I wanted to say was, do any of you have IBS or a similar condition?  This has plagued me ever since and I just wondered?  Best wishes to all who are stuck with this...and if I remember the box notes from the Interferon correctly most of the above is to be expected in a certain amount of people.
Helpful - 0
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Yes foxiepaws, I had an iron stomach( could eat anything) before my treatment. I could say that I was regular daily. But after, my intestines are trashed. And my life completely changed.
Avatar universal
I am in a similar position as I went thru some months of hcv therapy with interfuron, ribaviron, and incivik. Treatment failed after maybe 3 or 4 months. I am an RN BSN so am not uneducated in medical matters. My life as I knew it no longer exists. Every professional basically writes it off to emotional problems. I really had no propensity to emotional issues prior. I am extremely sensitive to drugs like Lyrica, normal doses of antidepressants.
Afterwards I had a suicide attempt with a knife to my left chest. I am now 63 yo disabled nurse. I could go on with signs and symptoms like CFS and fibromyalgia. Fatigue, joint aches are very prevelent. Mind fog, tremors, and lack of coordination prevail. My rheumatoid factor is up around 10.
Everything has changed. I do not know what to do or whether my life is stuck in this position. I can barely read a book because my concentration is so very poor.
Any suggestions?
Helpful - 0
2 Comments
try memantine and stay away from gluten, try prednisone or hydrocortisone for the fatigue and mindfog. try to stay on a low dose. good luck
I was looking at the answer given to you by 'lookbehindyou' and I am interested to see that gluten was mentioned.  I have become fiercely intolerant to gluten since my treatment in the late 90's...I would be interested to hear if anyone else has gluten intolerance or IBS that they suspect may be related to INF a. Also I have always been annoyed by the fact that women in Ireland who received the Anti D due to Rhesus Negative blood after pregnancy,  were compensated for their HCV while in Scotland and England they simply covered it up!
Avatar universal
I'm constantly surprised by the number of people who still add to this page.
I may not reply asap as I have days I can't but it doesn't mean I don't read them.
How they can deny that this is a fact with all of us saying the same complaints is beyond me...
Helpful - 0
2 Comments
You are far from alone...I have come to the conclusion that natural methods are the way I will go having been the rounds with conventional medicine. I am fortunate not to have bad pain but the exhaustion effectively rules out life as I knew it pre interferon. I believe that there is some acknowledgement from individual Doctors regarding on going after effects but doubt that an admission will be forthcoming. All the very best to you and all that still struggle. I celebrate small improvements and am learning how important it is not to charge back into action when have a little energy. It always seems to result in a crash if I do,
You are far from alone...I have come to the conclusion that natural methods are the way I will go having been the rounds with conventional medicine. I am fortunate not to have bad pain but the exhaustion effectively rules out life as I knew it pre interferon. I believe that there is some acknowledgement from individual Doctors regarding on going after effects but doubt that an admission will be forthcoming. All the very best to you and all that still struggle. I celebrate small improvements and am learning how important it is not to charge back into action when have a little energy. It always seems to result in a crash if I do,
Avatar universal
Was treated for hepatitis C in 1999 at Wake Forest Baptist Medical Center I still have basically the same side effects that I experienced when I was on the interferon I posted because I did not know that so many we're going through the same things
Helpful - 0
1 Comments
it's a shame how many are cut short in their quality of life, never warned, symptoms are hell
7002065 tn?1443073614
interferon causes autoimmunity in the brain
Helpful - 0
Avatar universal
Check this article out!!! There is proof that interferon is toxic...and explains all the problems resulting in the fibro....law suit anyone?

http://www.cortjohnson.org/blog/2015/09/20/spinning-fibromyalgia-brain-findings-suggest-dopamine-may-be-key/
Helpful - 0
7002065 tn?1443073614
You said that the 0.5 naloxone which comes with the subuxone worsen your status. Well, naloxone doesn't get into the bloodstream. It's in the Subuxone only to prevent users from injecting the drug.Naloxone is IV only. You need naltrexone to get the desired effects.

Good luck
Helpful - 0
Avatar universal
me too i feel the same i was ok when i had the hep c done the treatment 10 years ago and never recovered .
Helpful - 0
Avatar universal
hi im sorry to tell you but i took the treatment ten years ago and my symptoms of fatigue and depression brain fog the lot i am 52 from the uk it has ruined my life i used to be so active would have rather lived with the hep c x
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Avatar universal
i took the treatment in 2005 and ten years later i have brain fog aged abt 30years out of breath deppresed cant even think straight so so tired all the time the list goes on im always in bed i actually feel suicidal tried all sorts of meds i would rather have hep c i was ok when i had it i am a female 52 and feel abt 90 my life is over and no one understands unless they have been through it.
Helpful - 0
747988 tn?1396536878
pub med re peripheral neuropathy and antiretroviral drugs       http://www.ncbi.nlm.nih.gov/pubmed/11293802                        
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Avatar universal
I tx'd for  almost a year w/ pegasys & 800mg. Ribavirin from either '06-'07 or '07-'08. (Bad brain fog--STILL!)   Still UND
I worked each day on tx at an extremely physical job while HGB fell and started Procrit....but now- I am collecting SSD.
I am much worse now than on tx or pre for that matter...
Many of the same sx's as above.  
I was so glad to see this forum (and recognize some names-Hi all) and especially know I'm not alone in this.  I will read through all the posts on each thread.
I'm experiencing...
Muscle aches
Extreme fatigue
Joint aches (RA+)
Thyroid (Hypo)
Numb hands
Psoriasis has never gone away (Much better though)
I still have a sinus thing that has never gone away since tx and also a slight ringing in ears that has gotten a bit better. (Or I'm used to it)
The fatigue is SO CONSUMING!!
Anyway-I look forward to being here again and reading all the posts
Xen
Helpful - 0
747988 tn?1396536878
interferon and celiac's disease...                                   http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-28032004000200012
Helpful - 0
Avatar universal
Re Supplements that help. DHEA helps me a good deal and I've heard others report the same. In fact, it ought to be prescribed and free as part of aftercare, at least for men (there are some alleged dangers of masculinization for women so I don't know if it's worth the risk). In fact any "body-building" types of supplement are likely to help, eg alanine, and other amino-acids for energy eg carnitine, glutamine. Reishi mushroom powder (aka ganoderma) is also damn good (you must take it every day to gain any benefit. Buy it on ebay from Thailand)
Helpful - 0
Avatar universal
I attempted interferon/ribovirin twice: I only lasted about five weeks each time because the side-effects were so severe and support from the NHS criminally non-existent. Last time was nearly 7 years ago yet I still have memory damage, gout, tendonitis, visual loss, sleep problems, nervous problems and god knows what else. The CFS wore off about 2 years after stopping treatment but it may as well not have as I have no volition whatever, I'm almost a cabbage. Memory and sleep improved about 4 years after, but have since started deteriorating again along with balance and coordination.
Consenting to treatment was the biggest mistake of my life, I was conned into it with a pack of lies. Yes, its all about money; they get paid for signing you up, paid again if you consent to participate in "research projects", paid again when they make you see the nurse or call you to appointments where they just talk about cricket, paid again for having a "student" present: one long gravy-train is the NHS. Doctors should all be sole traders you can sue if they do wrong and not pay if they are rubbish.
I was in an at-risk group with evidence of a pre-existing auto-immune condition. I pointed this out to both consultants; assured I'd be watched, but abandoned when it all went bad. I've lost my house, hundreds of thousands of pounds, and now cannot work. They continue to deny their treatment caused my problems when it obviously did so I cannot even get basic welfare help. There is no justice in the UK.
And of course it never came close to curing HCV, although ironically that has never given me any problems. In a nutshell DONT DO IT.
Helpful - 0
Avatar universal
For all of those referring it to chemo. Our GP's first comment was "It is like chemo to your liver".  He hit it right on.  He was very sympathetic to my husband. I think he was more forthcoming with the consequences of the treatment than the liver spec.   I asked him if Hormones play a role in inflammation and he said he was not sure and with his low  results it was worth a try.  Soon after most of the inflammation has gone away.  I was also suffering from inflammation due to post surgery and I also looked into my hormones and sure enough that was a major problem.
Helpful - 0
Avatar universal
My husband did treatment immediately when FDA released the new treatment 2 years ago.  Within 12 weeks he was undetectable.  As a caregiver it was very hard for me to watch him suffer.  Within the 2nd week of treatment all known side effects and then some kicked in.  The liver specialist promised he would be there for his patience during treatment which we discovered was not true.  He was only interested in the before/after results and don't bother him any symptoms.  I then took a lot of matters in my hands and did a lot of research on my own and studies other peoples prior experiences and what worked for them per symptom.  The people were helpful.  Since my husband was basically bed ridden throughout the treatment and lost so much muscle mass, I asked the liver doctor during one of the visits to check his liver that would he please do a more thorough panel on him beyond checking his liver and for anemia.  I asked him to check his hormone levels which is a major factor in your overall well being as a man or a woman.  The doctor looked at me as if I was nuts, and thought I was selfishly asking for my own needs.  I said especially check his testosterone levels because I was convinced these meds have killed it since he was so  weak.   Doctor reluctantly did as I requested and sure enough I was dead on.  He was at the lowest levels, thus also bring him down in strength and also kept him down post treatment and unable to fight infections easily.  Once he was cleared of the Hep C, the GP put him on Androgel which is topical.  We waited a while to see if it would work but it was not strong enough.  Once doctor gave him shots of Testosterone, quickly his immune system starting recovering, he was getting more energy, his body stopped hurting so much, he started loosing the excessive weight he had gained post treatment and he started getting an overall better feeling  including loosing the brain fog.
Therefore, my suggestions is some of the commonly missed with doctors.  Have them do thorough blood panels including your hormones (which they will not check unless specifically asked).  Your hormones play a big role in your immune system and overall well being and believe it or not a lot of health issues.  I'd rather substitute hormones rather than more pharmaceuticals.  Husband only takes vitamins and Test.
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Avatar universal
Hi, glad I have found this forum. I am 61 year old male who is virus free after 40 years of Hep C with stage 3 liver disease. I have been treated 3 times, the first with interferon, second with interferon and ribivirin, and the last was with interferon, ribivirin and incivek for 11 months. The last treatment ended in June 2012 and was brutal. Now 2 years later I have never felt worse in my life. I am experiencing headaches, severe fatigue, brain fog and joint pain on a daily basis. When I sleep i can't bend my legs or arm because of pain. I essentially have to sleep at attention. Reading has become difficult because my attention span is pathetic. Praying it doesn't get worse.
Steve
Helpful - 0
317787 tn?1473358451
Hi, another member put this URL in another thread, I thought it might help others.

http://www.hepatitiscnewdrugresearch.com/hcv-neuropsychiatric-symptoms-ldquobrain-fogrdquo.html

Also after treating I used NADH to try to help my brain fog.  I believe it did help me with the worst of it.  The problem is we are all different so no way to know.  I also tried Dribose.  I had forgotten about it until someone else  mentioned it
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317787 tn?1473358451
Thank you all for sharing.  I really appreciate it very much.
Dee
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253566 tn?1219679699
chemotherapy vs. immunotherapy

I only heard my GPs nurse call it chemo and then some called it immunotherapy...

Anyways, I found those links fascinating and will bring them to my GP.

Thanks both. f
Helpful - 0
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