Peg Interferon

I have had so many side effects from taking Peg Interferon in 2001 I don't know if I can lis theim all. I,ve been off o it for 2 and a half years and my whole body still aches some times I can't even move my thumb . It seems to be getting even worse not better. My toes hurt, my ribs ,fingers, i can't see very well, my hearing is not as good. My life is misserable. I wish I had never even heard of this drug that was upose to help me. Please some help me find away to make sure no one else takes this horriable drug. I can't even remember alot of things. HELP!!!!!!!!

I was on interferon for four months when one day it felt like my head was exploding. THroughout the day. Headaches were so drastic, doc sent me to MRI. They called up and said "Stop taking the interferon. You've had a stroke. " Since then, over a year later, I have chronic headaches and now five MRI's later, doctors are not sure what it is. A tumor? A stroke? Al they know is it is some mysterious lesion. When I tell the,m it was the interferon, they just say "You could be right."

24 months of treatment here, failed of course. After effects are chronic fatigue syndrome, fibromyalgia and a damaged thyroid. Hair has never came back and it causes you to be sterile. It is a form of chemotherapy so needs to be treated as such. Also causes rages and depression really bad that don't completely go away after stopping treatment.

Hi

I was beginning to think I was the only one having problems post Hepatitis C therapy.
I now have "neurological" deficits and unexplained joint pain.
Severe depression, insomnia, and in constant pain. I had "trigger finger" for awhile, but then it mysteriously disappeared. The constant wrist and forearm seems to be worse on one side one day and then changes. Of course the x-rays are normal.
The tx "burned out" my thyroid in the first month.
My doctor has signed a form of permanent disability, but I am still awaiting a Social Security, since I have been denied twice.

Does anyone know of any current lawsuits re: Hep C therapy?

Cheri

To all those who have been permanently injured by this drug - keep on speaking up. I was on treatment for 4 months in 2002. I am still having the same problems as the rest of you. Luckily, I was approved for permanent disability from SSI, but I would rather have my life back. We were some of the first users (guinea pigs) I have been working for 2 1/2 year on getting this message heard. I personally know of approximately 300 other patients with similar stories. Contact me if you want. Annie

I completed the Peg-Interferon treatment virtually 2 years ago. I still have fatigue as if I was still taking the drug. I also lack the ability to concentrate and stay focused as I could prior to the treatment. I now wish I had never took the drug. It is not unusual for me to go to bed for 2 days at a time. Does anybody know of any lawsuits against Roche for causing medical long term problems? :?: :(

I used the Roche brand. Did anybody experiance extream loss of memory from the drug as I did. I even forgot perople I had know well for years. Thank goodness that has went away.

To all those who have been permanently injured by this drug - keep on speaking up. I was on treatment for 4 months in 2002. I am still having the same problems as the rest of you. Luckily, I was approved for permanent disability from SSI, but I would rather have my life back. We were some of the first users (guinea pigs) I have been working for 2 1/2 year on getting this message heard. I personally know of approximately 300 other patients with similar stories. Contact me if you want. Annie

Annie,
I took the interferon and ribavrin Pegsays in 2003 for 6 months. I was told that side affects were really bad but they would go away after stopping the treatments. It has been 5 years and these side affects are getting worse. I have spent thousands of dolloars trying to figure out what is wrong with me and they come up with nothing. I know now that this medication is the cause and it is not going away. I have a job but I miss a lot of work because of those 20 hour power naps that occur from time to time. My minid is always confused and I have trouble with the thinking part a lot. I think I will eventually lose my job. What can I do?
Craig Harris
no email links, please.com
2089348218 phone

I took the peg interferon and the ribavarin back in 2003, I was supposed to take it for 12 months but only lasted 6 months. I went through hell and haven't made it back all the way. I have alot of joint problems, headaches, fatigue, I have a really hard time with concentrating and remembering things. When I went to see my Physcian they ran several tests on me and said you have some arthritis but that's it. Thanks Craig for this web sight now I know that I am not just going crazy even though that's how I've felt since the therapy. I would not ever recommend anyone to take this medication.I miss myself.
Valerie

I was on the interferon/Ribravarin in 1999. I had many bad side effects and after 4 months of treatment, I refused to take the treatment anymore. I had, while under the treatment and still have thought confusion, memory loss, fatigue and joint pain to name a few side effects. I was getting so sick that I had to stop taking it. The skin around my eyes peeled every other day and I had to put anti-biotic ointment on them daily. The fatigue, joint pain, thought confusion, and memory loss is still present even though I stopped the treatment. I was never told what side effects I would have while on the treatment nor anything about lingering side effects. I feel that someone has lied by omission. When I saw my dr. telling him that I no longer was going to take the treatment. He told me that I had written the book for bad side effects. There were other effects, I just can't remember them all. I miss myself too! People should be made aware and informed of what they are getting into before they take this drug. If considering taking this drug, make sure you know what you are getting yourself into.....you won't be the same person..after interferon/ribravarin.......
Cathy s.

I am so glad I found you all. I was on this horrible meds in 2003 for only 6 months. I have not been the same since. Everything you all described is happening to me. I walk around in a fog all the time. Some days are ok, but I have been in bed for 3 days now, feel better today. And of course it did not cure the hep c. What are we going to do??? My life is ruined because of this stuff. My dr was a horrible person, he retired just after I was off the interferon, at one time I was on a total of 30 meds in one day along with this poison. Does anyone know if the dr got kickbacks on this???? At $6000.00 a month, I wonder. After 6 years I finally got SSI, I have always worked 2 or more jobs and now live like this!!!!!!! I can't remember anything. Post 6 years and still like this. Help!!!! Please let me know if there is anything I can do to prevent others from this horrible poison drug.

After refusing to take this drug for years, I broke down and took it out of fear in 2007. The ads I saw about Hep C and liver damage were horrendous. They were put out there by the pharma. I lasted only 2 1/2 months on pegintron before I got a fever of 104' and my thyroid burnt out. It's been 3 years and they say I'm cured, but I'm fatigued, get headaches and blurry vision with exhausting irritability and depression, and I also have unremitting psoriasis with large plaques. My doctors disappeared. I've read that less than 1% of patients on Pegintron w/Ribivarin (what I took) lose their thyroid function. I don't believe it. I think the rate is much higher because I keep finding others with fatigue and no thyroid function. I was too sick for too long to work (I actually got fired because I looked bad) and I almost lost my house. Fortunately SSDI finally approved. I'm going to try homeopathy to eradicate the toxic meds from my cells. It seems that everyone who takes this medicine comes back with serious problems and gets pushed to the wayside. I wish you all the best and maybe one day we will feel better. Feel free to contact me.

Bird

HI....bird !!!!
Everything you all described is happening to me. I walk around in a fog all the time. Some days are ok, but I have been in bed for 3 days now, feel better today. And of course it did not cure the hep c. What are we going to do??
help me plz.....!!!!
tnx and god bless......

I took the Peg Interferon in 2003 for a six month period and it has ruined my life. I can no longer function good enough to work a regular job. It took me nearly 5 years of medical tests and many types of different doctors before I found the people that had taken this Peg Interferon that I took and have nearly the same exact problems as me. I need verification of others that have these terrible symptoms that are not going away years after they have taken this Interferon. I would appreciate an email from anyone who like to share their story with me at c.no email links, please.com please. I need input to see what can be done about this.

Thanks
Craig Harris
1667 S. 1700 E.
Gooding, Idaho 83330
home: 208-934-8218
Cell: 208-731-8218

Letter was sent to Doctors Prescribing Medication
Created December 28, 2008

I was a patient of Dr. Allen Sinclair’s over 5 years ago, and came to him with stomach problems. He ran several tests and found Hepatitis C. He told me after a liver biopsy that it would probably shave 5 years off of my life. He also told me there was a medication that could cure it in most patients. The doctor told me the effects would be severe while on the medication, but would go away shortly after ending the medication. He was right; the effects from the medication were severe. I felt terrible. But I was willing to endure 6 months of hell to lengthen my lifespan 5 years. Again, I was counting on just 6 months of hell, and nothing thereafter. The medication I was given was the Pegasus with Interferon injections once a week, and the Ribavirin tablets daily for six months. After the medication was done, my Hep C levels were down and said to be undetectable. The Hep C was dead. It was a success. But I still feel really sick with chronic fatigue, foggy and unclear thinking, visual impairment that affects my driving, slurred speech, more infections than usual that require antibiotics to get rid of, still no sex life at all(was active before the medication), and lack of creative thought processes.

I went back to Dr. Sinclair for 6 months complaining of all these symptoms, and he finally said there was nothing wrong with me, that it was “all in my head.” He said he had cured me of Hepatitis C, and I was a healthy 50 year old male. I quit going to the doctors for about a year until the symptoms became unbearable, and my family forced me to go see a medical professional. It is my family that forced me to go see a medical professional. It is not normal for a healthy 50 year old male to be feeling the way I felt, always in bed sleeping, and feeling ill constantly. I went to a different doctor, Dr Mary Beth Curtis, and she ran the tests all over and over again in an attempt to find out something. My insurance company and I have spent thousands of dollars trying to find out what is wrong with me. I visited Dr Mary Beth Curtis, and she ran the tests over and over again in an attempt to find out something. Over the next two years we tried so many different things to get to the bottom of what was going on, finally she said it was depression and I should try antidepressants. I tried 6 different kinds of antidepressants, yet still had the symptoms. She finally told me there was nothing wrong with me, so I became discouraged and gave up seeking medical counsel.

I am now about 5 years out from taking Interferon and Ribavarin, and I still feel sick. As a matter of fact, I am feeling less well as time goes on. I visited my local doctor, Dr. Pryor, here in Gooding, ID, to receive antibiotics to get rid of my infections, caused by my damaged immune system. He also ran some tests on me to see why I was sick so much, and was not able to find a cause. I had two bouts of Pneumonia within a 3 month period. The antibiotics on the second bout almost killed me, they were so strong. But I got over it, and got a pneumonia shot after recuperating, hoping it would keep me from getting it again. Dr. Pryor used all the tools available to him here in our small town of Gooding, trying to find a cause. He did get me started on rigid iron supplements everyday, and said I would probably have to take the supplements the rest of my life, as I am anemic most of the time. Again, after thousands of dollars spent on tests and medical equipment, we still come up with nothing. I am still sick on a regular basis, and now my job is in jeopardy.

With these effects getting worse with time, I am forced to look for a solution. I then started booking myself at the University of Utah to see if they could find something. I took three costly visits to the University. They ran more tests and performed some medical procedures, all costing more money for me and my insurance company. The doctors there were curious about my coma state of 36 hour to 48 hour power naps that I was having, and wanted to evaluate. They monitored me closely while I was in the coma state. Since these procedures, I have not returned, but I keep the lines of communication open. I have had power naps since then, I am not functional enough to get in a car, and my wife cannot just leave at a short notice with her job. So we have not been back yet. The doctors there did want me to get information on the Pegasys Interferon and Copegus Ribavirin medication that I took to send it to them. So I got on the internet, and stumbled on a site where hundreds of people were emailing back and forth, and putting information into a forum where people could see. I started reading through them, and just started crying, as these people have been using the same medication that I had for Hep C, and were having the exact symptoms that I had been having for over 5 years now. Some of these people were 10 to 17 years from the time they used the medication, and the symptoms were still there, and were gradually getting worse with time. They were helping one another with herbal medications and vitamins that may help, but would not cure the irreversible affects of the Interferon.

I was relieved for a couple of days just knowing what was wrong with me, and finding others having the exact same issues. After five years of searching for answers, I finally found the answer and reason I felt like I did. It was a huge weight lifted off of me, but after a couple of days I got really angry, because like other people, I was told the symptoms were temporary while on the medication. It seems the medical profession is totally unaware of the permanent side effects that can, and most certainly do, go along with the Interferon treatments. I was shocked. When I called Roche (the company that makes Pegasys), they told me they had no documentation of any lasting side effects. I don’t know what the percentage is, but I would gladly take those 5 years off my lifetime, if I could be anything close to the way I was before I took the medication. My family says I am just not the same person, and I have to agree. Personality change is one of the symptoms these people mentioned online as well.

Now, there are vitamins and prescription drugs that can actually help the damaged neurotransmitters in the brain function a little better, but they are not a cure, and I know I will never be like I was. I am encouraged by the enthusiasm of Dr. Pryor here in Gooding. I have just started taking some of the medications from Dr. Pryor, and they do seem to help, so I am encouraged by that.

I believe without any reservations at all that the symptoms I am having in my life today were caused by the Pegasys medication I took over 5 years ago. I also believe that the symptoms I am having are irreversible, they are not going to get better over time.

Now with my hundreds of new found friends that are suffering from this like me, and all the information I have gathered from other people doctors have rejected, we want to be heard by the medical profession and the drug companies. We may have a problem here that is worse than we originally thought. More studies should be done immediately for the safety of future patients that may ruin their lives by taking this poison.

With the hundreds I have found out there, there has to be thousands more out there in hiding, in mental institutions, sick and not knowing why, or dead. Several spouses have written in for their loved ones who have committed suicide. These people had no history of mental illness, depression, or suicidal tendencies.

With all this said, patients getting ready to use this medication should be told of the great possibility that they may never be the same person after the treatments are over. They should have access to the former users of this product that had poor results. Or do we shove this aside and pay no attention to it, as it is just one person’s opinion.

I don’t expect any miracles here, but don’t you owe the next person that uses these treatments all the information they can get on it? I wish someone would have stepped in before I started these treatments, and given me all the information-good and bad. I would not be where I am today.

I am available at any time and my contact information is listed below.

Craig Harris
1667 S. 1700 E.
Gooding ID 83330
Phone: 208-934-8218
Cell: 208-731-8218
Email: c.no email links, please.com

My name in Nicholas Graefe and I'm one of this drug companys test subjects. I wasn't told about any of these horrible side effects by Froedtert Memorial Hospital, they said that the worst side effect's would be thyroid problems and that, I'ld be back to my self within a year. About 1-2 months into the treatment I was having very bad joint and muscle pain. When I went into the hospital for a check up I was in tears due to the chronic pain in my wrists and ankles. My doctor told me that after treatment I would be back to normal. After taking the lethal medication I was tossed out of Froedert Hospital like yesterdays trash, and was told that my symptoms were not from the medication, althought I was a healthy 28 yr old male before, now I"m a cripple. I was diagnosed with Peripherial Neuropathy after 2 years of being bounced from doctor to doctor, and being told that I was just drug seeking and that It's all in my head. I was on the way to having a nervous break down, balled up on the ground in excrustiating pain, nearly suicidal. I finally foung a doctor who gave a shit and performed an (EMG AND NERVE CONDUCTION STUDY). The doctors at the hospital were supposed to take me off the medication if it was causing so many side effects. Somebody needs to make this right for me and my family, and for the family of all the other thousands of patients who lost there life's to this lethal crap.I'm alive outside but I feel dead inside.I cant play ball with my daughter, I feel like this is all a dream. On January 5, 2011, I had a SCS implant (SPINAL CORD STIMULATION) so now I'm a crippled father of a 2 1/2 year old little girl, and a husband who cant even take care of my self on most days, let alone take care of my little girl.These assholes at the hospital and drug company need to be took accountable for what they did to me, and to the thousands of other familys. All they care about is lining there pockets with money, the doctors the drug company. I have proof of what they said the symptoms are, and that the only lasting symptom is thyroid problems. Its time to stick it to these pricks. I was a healthy young man before this now I dont even no what to consider my self. If anyone has any questions you can call me.
Nicholas M Graefe
Waukesha, Wi 53186
262-408-2951

March 9th, 2011--
My symptoms are still the same and gradually getting worse with age. I am not stable enough to work and keep getting turned down for disability. I have used almost almost all of the retirement savings up that I had saved for when I retire at 67 but I am only 57 now. Interferon treatments have taken my lively hood away. I have continually sent all the research information that I have found on the internet and a contact list of individuals that have also been taken advantage of with this medication to all the authorities that I know-- the Drug company itself that makes and distributes it to the many Doctors that prescribe this Pegasus package of Interferon injections and Ribavirin tablets, The Doctors that prescribe it, the FDA that allows it to be distributed, the President of the United States of America, the Supreme Court, and my local Idaho Senator-- Mike Crapo. The only response I got was from Crapo's Office that they would start looking into it. This last week I suffered an episode of what I have labeled the Semi-Coma for several days where at the worst part of it I am totally paralyzed and cannot speak but still aware of what is going on around me. This severe part only lasts a few hours but getting there and then recovering from it takes about a week. My good friends and family help me through this until return back to just the normal interferon fog head that is constantly swirling around but I can half way function properly. I know others of you have some different side affects but this is what I have been living through for the past 8 years after the medication. My life will never be the same but we can help those that starting this medication every day. We have to help them so they don't end up like us. That is our challenge and motivation. Yes, I do believe they owe me the years that I cannot work but that is not as important as saving the next innocent person that is given this medication. This is our responsibility to get this stopped so others will not have go through this. Please contact me. Thanks.
Sincerly,

Craig Harris
2089348218 or
2087318218