I was treated and cured from hepC 4 years ago. Until I discovered I had the condition my health was fine. As soon as I started treatment my health plummeted and I have been ill ever since. Interferon has destroyed my life, I have cryoglobunemia, aches, pains, brain fog and extreme fatigue. I was not told that this drug can lead to more problems, I was not told that I could have been monitered and with some life style changes lived with the virus. I have a friend who almost certainly contracted the virus at the same time as me (About 30 years ago) he is fine and well at the moment and waiting for the new drug haveron?
I am angry that I along with many others were used as guine pigs .
I am 64 and my life as I knew it is over, I will not recover and will probably go on to have other problems
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Alvess123
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I have spent the last 4 years going from one dept to the next, I have had a nerve biopsy, muscle biopsy, scans blood tests and only in the last year tested positive for cryoglobunemia. I have given up now, my life has been destroyed by the treatment. The only treatment offered for the cryoglobunemia is plasma exchange which is not a cure but a temporary relief from symptoms. I am sick of dealing with the nhs.
I was told for the first 2 years after then"cure" that I would recover soon! Cryoglobunemia is common and linked to hepC yet despite having all the symptoms only in the last year have they looked and found it.
Perhaps the cryoglobulinemia associated with HCV was present before the hep c treatment and the symptoms you have now are cryoglobulinemia connected? Sounds like interferon Alpha exacerbates it, ncbi.nlm.nih.gov/pubmed/128...
So I guess it's a worry the docs didn't diagnose it before the Hep C treatment. Hopefully most people currently on the new drugs which don't include interferon won't have the same risk.
Thank you, I had no symptoms of anything before being diagnosed with
Hep C. I was healthy and working. I found out i had hep C whilst in hospital in India. I was being treated for gastroenteritis and they test for hep C as a matter of course as it is endemic in India.
As i said my health deteriorated during the interferon treatment and has been downhill ever since. I was told that the interferon was the cause and that i would recover soon after treatment finished.
Despite my constant complaints of fatigue, brain fog, aches and pains over the last 4 years nobody put 2 and 2 together. The link with cryoglobulins and hep C was not picked up.
I have requested an appointment with a vasculitis specialist, Alan Salama, had i not found this site then i would not have known. Plasma exchange is all i have been offered so far.
I have given up, if i get to see Salama, great if not i really don,t care anymore, i can,t work, my money is gone.
Sorry if this sounds negative but surely the medical establishment must know about the connection between hep C and Cryoglobunemia?
I am not alone, many people who have been treated with interferon continue to have problems long after the "cure"
Yes the medical profession do know about the link, the research paper I linked to proves that and is most likely one of many similar published findings. But as Art says, what was critical in your case was whether they tested you for it prior to treatment, I don't know if that is standard practice. As treatments progress, there is less and less interferon used as part of the protocol, so hopefully cases like your will become rarer. Unfortunately in the meantime there are 1,000s including members of this forum, desperate to try treatment rather than endure the inevitable unpleasant and drawn out side effects and symptoms that come from progressive cirrhosis
I hope you get to see the specialist and things start to turn around for you.
You do not sound negative, you sound frustrated. You sound knowledged and seeking answers but somewhat hopeless to finding any. Can you take up walking everyday? It will ease your mind and make your health a bit better. Aloha
This link I use for understanding treatments and conditions, if you have not already looked into your condition on this site. It is free to register if asked..
I feel bad you have suffered so much..you did not mention whether you cleared your HCV on the interferon/ribavirin treatment or not? Even the new treatments are not without their side effects... new side effects keep cropping up that we are adding to the FDA's list as more and more of us use different treatments depending on our genotypes and Fibroscan.
I think, in the future, hopefully, we will all receive treatments for our conditions after careful consideration is given to our own genetic make up...it will be the fine tuning we need so that the right drugs are given to us in the right doses without exasperating underlying conditions, esp autoimmune ones...
The medical profession has struggled to get funding and then to develop a cure for HCV...even now certain genotypes still have a lower cure rate due to specific resistant genetic variation....with all the new drugs.
Speaking of Guinea pigs, my mother had lung cancer back in the early 80's, oat cell cancer. She was given such massive doses of a new drug, tamoxifen that she nearly died...back then patient weight and dose were unknown factors using these new drugs..they became determined through patient use and side effects recorded.
Hammer to smash an acorn, only this acorn was my mother who trusted the medical profession. But, they are only people like you and I who have read more books, taken more exams and are exposed to more illness medically speaking than us? What they must learn is to listen to their patient. And as a patient you must listen to what your body tells you. My mother trusted a Specialist who did not listen. My mother was vulnerable and weak. After such a massive dose my mothers cancer went on to spread throughout her body and she died of liver cancer that year.
I recently watched a drama called 'Any Human Heart' and thought about my bad luck and my good luck in life....and my mother's. And thinking of you, I think it is time for you to have some good luck....hope the link helps in some way.
I firmly believe that the drug Interferon should be banned from this very moment. I too was prescribed Interferon and Ribavarin for the treatment of hepatitis C, and like you I wish that I had never taken it. I was only on it for three months and in that small amount of time, like you I felt that my life had been destroyed. They took me off it (thank god) when I had the three monthly test to see if it was working and it wasn't. The following years I suffered from excruciating pain from the Interferon adversely reacting to the oral lichen planus. My consultant sent off a yellow card and apologized. I have been a patient at the dental hospital ever since.
There is some light at the end of the tunnel. I was one of the first 500 patients to trial what is now Harvoni and Ribervarin. By the time I was put on it I had liver cancer caused by the hepatitis c and things were getting desperate. The new treatment eventually cleared the virus and the extreme pain from the oral lichen planus has faded in to the background. I had no side effects with the new treatment. Last year I had a liver transplant and now I am cancer free too!!
My advice to you is that if you are offered the new Harvoni treatment take it. For me it was completely different to Interferon and this miracle drug worked.
I like you Ruswati was on one of the first Interferon/Ribavirin Drug Trials. I got HCV from blood transfusion after childbirth in 1973 when they did not test blood. I remember I was at the Clementine Churchill hospital in Harrow every weekend for about 6 weeks and had blood takes every hour. Afterwards I was given the treatment - Interferon and Ribavirin. I remember having to inject myself three times a week with Interferon in the tummy. I was ill and put on Beta Blocker Inderal, I was allergic to that and I remember phoning my HCV nurse telling him I thought I was going to die. I think he calmed me and told me how to breathe.
Then four months later I got a phone call from my nurse telling me to stop the treatment - my viral load had not changed.
In 2012 my HCV turned to primary C and I had Liver resection.
I just finished Harvoni/Ribavirin treatment and so far my HCV is undetectable - have to wait until April to know for certain.
Thank you all for your replys, I was "cured" of the hepatitis C in 2012. (genotype 3)
I responded well and my viral load went down immediately i started the interferon. At the end of the 6 month treatment i was told i was "cured" and that my symptoms would disappear and i would be back at work soon. I had NO symptoms before treatment, i was working and living a normal life, i was healthy enough to travel around India on trains and buses for 2 months! that takes stamina and strength. That is where i found out i had the virus. I was NOT told of any risk in having treatment.
I am angry that nobody made the connection between Hep C and Cryoglobunemia, only in the last year did they test for it despite my constant complaints of fatigue, brain fog, aches and pains. I don,t know if you can have Cryoglobunemia without symptoms so i don,t know if i already had it.
After a year or more of illness following the treatment i am angry that nobody made that connection. Only in the last year have they looked and found the Cryoglobulins.
I had Plasma exchange 7 months ago which greatly helped with the fatigue and aches and pains, but it is not a cure. Now i am back to square one, housebound. I was supposed to have another plasma treatment this week but has been delayed until next week.
I found out on this site that i should be seeing somebody who specialises in this condition, i emailed the haematologist who is treating me at the hospital and asked to see professor Alan Salama i received a reply saying yes. So i am now waiting.
I was treated a year with interferon in 2004, it did not kill the virus but almost killed me. I moved to a warm climate in 2007 and began exercising 15 minutes at a time, its 2016 and everyone thinks I look healthier than everyone else. I am 64 and perform endurance exercises now from 5 to 10 hours every week, its hard starting every time, to keep it up year after year. But I want to live so I make myself exercise. I cycle, swim, perform resistance exercise with hula hoops. I research food that fuels my liver. Dates are the most potent liver full, two organic dates to improve liver function. I can cycle 2 hard hours on two dates. I hope you can change things for yourself even a little. I am now living with liver cancer, it developed during treatment with olysio and solvaldi in 2014, honestly I think it was the Olysio caused the cancer. But then again I have had this disease 40 years plus so it might just be the disease alone that caused the cancer in 2014,the virus is dead. Good luck
I also was on Interferon and Riba for 48wks..it was a living hell..my hair fell out i had massive lesions on my legs and my Thyroid was destroyed so on Thyroxine for life...my virus was back within mths ..when i started the Interferon i had mild inflammation only 3yrs later i have cirrhosis. .i do think the Interferon made it worse..now awaiting the real cure Harvoni!
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