Post Interferon Syndrome

Hi! I'm 3 years post interferon Alpha tx, 5 wk induction and 48 wks 3x per wk shots. I'm thankful to haver survived stage 3 metastatic melanoma but I just can't seem to shake the side effects. I though it was all in my head until I found this forum!! I still have the fatigue, body aches, depression, anxiety, brain fog, plus I've developed migraines! My doctors don't really hear me. How do I make them understand that it's not in my head, that my body still hurts, honestly I feel like I've been poisoned and just just can't flush it out!!

I started treatment for hep-c back in the summer of 08 , it was horrendous the 6 months on it , I honestly thought life would get back to normal but 10 years down the line I feel as if the life has been sucked out of me , from the top of my head to the sole of my feet I am in chronic pain , my memory is terrible I forget things all the time my work colleagues names for instance who ave known for years its like its just not there , new symptoms on chronic pain is my shoulders and knees , there should be something done about as in good faith we enter into the treatment maybe the dark truth is we where guinea pigs and the makers have known all along of the potential long term side effects

I also want to add that its ironic that a large amount of people post interferon all seem to be getting a Fibro diagnosis. Isn't that odd?

Hi! I'm 3 years post interferon Alpha tx, 5 wk induction and 48 wks 3x per wk shots. I'm thankful to haver survived stage 3 metastatic melanoma but I just can't seem to shake the side effects. I though it was all in my head until I found this forum!! I still have the fatigue, body aches, depression, anxiety, brain fog, plus I've developed migraines! My doctors don't really hear me. How do I make them understand that it's not in my head, that my body still hurts, honestly I feel like I've been poisoned and just just can't flush it out!!

I've treated 2x with interferon and ribavirin Both treatments worked for 3 months Then back with a vengance.

Hi, I am 7 yrs post INTERFERON/RIBAVIRON tx and my life is ruined! My memory is so bad now I have no idea why I walked into a room or where I parked at store. I was a thriving RN/MPH and now I have CVID from the tx's. I am in so much pain all of the time it's hard to function. My personality has changed, I now have an autoimmune dx called sjogrens syndrome...life is hell for me anymore. PLs let me know how u r doing n if u r going thru all of this...thx lisa

Hi, I just went into the FDA website n turned these drugs in and told them everything that I am going thru. I would advise that everyone do that and maybe we'll get noticed a little quicker. I will not let this go...to many of us suffering and they will know me soon (big pharma)!! It took me 7 yrs to figure this all out n have notified all of my doctors...joke there. Lawyers keep turning me down. I will get the attention that it deserves before I die...which feels like everyday anymore!

Hello egosta
I also have a similar story as do countless hundreds of others too. I was given blood transfusions in 1988 after childbirth.After which I developed extremely heavy ladies times. The treatment for that was iron supplements. Shortly after that I developed acute jaundice and was hospitalised but after several blood tests etc was dischargedwith no diagnosis.Eventually after much rest my body recovered and life continued and I had two miscarriages over the next couple of years both with haemorrhage. So I requested sterilisation as to avoid any further heart ache. Again I recovered and decided to train as a Nurse and succeeded. It was in 2003 my Hep C was diagnosed after a needle stick injury at work. Still I continued with my life and the Interferon and Rabivirin treatment began. It was hellish every side effect thinkable was endured. During that time a blood test result said undetectable but the treatment continued. Eventually after a year I became too ill to continue the treatment. During all of this my life was ruined my career was ended as I was deemed incapable to practice and was forced to early retirement . My marriage ended and I also lost my house. Those symptoms remained the aching bones the swollen belly digestive problems foggyness confusion panic attacks and of course the fatigue. I had my gall bladder removed as gall stones where suspected I was tested for cancer of my womb etc all negative results. Over the years and many many fruitless assessments from various GP appointments drew blank. So I gave up and accepted my ill health as my lot and at least I was cured of hep c . 12 years on my long term fatigue aches and pains and cognigitive problems remain. Later I found out my blood tranfusuion had been TRACED back to the USA by gender. Thousands of people also contracted HIV/AIDS and have died or are in final stages of cirrhosis. I'm one of the lucky ones that survived but waiting now for further tests and liver scan results from a review as in the UK much care is being employed to detect Hep C.now that the infected blood tragedy is acknowledged.The Heptologist assured me that the new drugs are much better but I'm not convinced......my heart goes out to all who were/affected by Hep C