Post Interferon Syndrome

[alysfreeman]

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.

[kubhlai]

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.

[MsWebMD]

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.

[MsWebMD]

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.

[formwork]

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

[Dee1956]

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

[Dee1956]

Thank you all for sharing.  I really appreciate it very much.
Dee