Steven Tylers Secret Hepatitis Battle Message Board and Comments

Mr. Tyler,I from Bartlesville Ok.I have been battleing hepc for 14 years.I know all the ropes.I still battle wit alcohol,as well as mental illneds.I did interferon for 13 months,in remission for 3 years.It's rough here if you are ssi,but the medical neds are met.My mother was your biggest fan,and someday I hope to at leat recieve a e-mail from you.you have been a true nsperation for me and my mother.She passed 2 years ago from lynphoma.Imised her dearly.But one of the derams I have always wanted to meet you becaus I admire your courage and strength.I have no family,and you would certainly light up my lifw and give me hope. Sincrely,Carolyn,Bartkesvilee,Ok

I too had Hep C genotype 1a. I am 13 months post treatment with peg-intron and ribavirin. I am clear of the virus. I was clearly dying but still had the option of treatment. I took that option. I figured if I was going to die, I would die trying. It was the hardest year of my life. I was near death every day. My doctors didn't think I would make it and told me to discontinue treatment, but I had a three month supply of drugs, so I continued on. Once I did that, they allowed me to continue on. My advice is this--if you have to have treatment, then before you do, get on a good antidepressant, find a good psychiatrist that you can see at least once a week and more if neccessary.(I was up to 3 times per week at one point.) Get a good hat. You'll lose your hair, or if you don't, you won't feel like fixing it. Get a support system of friends and family who will check on you at least once EVERY SINGLE DAY. The suicide rate is unbelievable on this drug. It does cause a personality change while you're on it, so warn those around you. In other words, build a good, steady, reliable support network around yourself and USE it.Don't be a martyr. Inform the people around you of what they will be getting into and make sure they really want to get involved. Don't hold it against them if they can't handle it. You need those who can. You'll be exhausted, sick, dried up, and barely able to function at worst. That's how I was. I couldn't even walk from my bed to my fridge at one point to get a carton of yogurt. My husband used to come home on his breaks and run something up to me to eat. You may lose your ability to make decisions. I did. Try to keep your mind off yourself. I watched a lot of television which helped me pass the time and it was the only thing I had the energy to do. I could also order books from our public library online and they would send them free of charge and send someone to pick them up when I was done. I am a year out of treatment and feel terrible. Oh yeah, it affects your memory too. It's better than death, but it's a lot to deal with. I've developed fibromyalgia, pretty fair case of depression, and chronic fatigue syndrome. None of the standard drugs (or even obscure drugs) seem to work for me. I can't work anymore, because after two or three days of activity--meaning two or three hours of daily activity at most--I develop some type of sickness, be it an upper respiratory infection, flu, bronchitis, asthma,sinus infection, etc., it will be something that will knock me down for a few days. I think for quality of life issues I will probably go on pain meds. I do very well on opiates, so I'm thinking if I can have a life, I'll just have to deal with the drug addiction. Just to make you aware, so far with me, there are severe after effects, but if I had to do it all over again I would still do it just to live. All my labs are excellent and there is no medical reason that I feel so bad. I do feel better now than I did a year ago. I'm hoping that year by year I'll get better. I'm 51, so my age probably plays a big role in how severely the treatment has affected me. Good luck to those who try the treatment. I really mean that.

THIS IS SICK I was watching CBS last night with reporter Katie Couric. FINALLY maybe the HEP C STORY will get some attention. Hep C has been known about since 1989 early 1990. How MANY times are we going to see these SAME stories of people being EXPOSED in HOSPITAL settings. This time possibly 40,000 people were EXPOSED in Las Vegas from 2004 to the present time. WHO is watching out for the GENERAL public ? EVIDENTLY NO ONE! Read about it here & VOICE your OPINION on the CBS website. If YOU DON'T speak UP NOW while it's a HOT topic it will GO AWAY. THIS could be the VOICE we have AL been PRAYING for. http://www.cbsnews.com/stories/2008/02/25/eveningnews/main3875991.shtml http://www.southernnevadahealthdistrict.org/outbreaks/index.htm

How are you doing? I want to talk to steven Tyler

CAn you gave me her site Please

I too have HCV type 1 - the bad one. I do not know how I got it - but I am married for over 30 yrs to a Viet Era vet who was non-A, non-B positive for years. I was taking a break from work (aka: nervous break-down) and my Dr. said take the treatment NOW while you got the chance! I started on Pegasus shots once a week and 6 Ribavarin pills daily. I was not merely tired, not just fatigued, I felt like I was being SPITEFULLY LAZY too, I think. Like "f it all - I don't want to make dinner for the family or do laundry!" when I know damn good and well no one else will do it. I just wanted to stare out in space and lie in bed or play video games. A waste of life... My viral count went from 11,000,000 to 10,000 in a few months!! But my white blood cell count dropped way low and I became very anemic. So they put me on weekly Nupegen shots 3 weeks ago. I just found out I am my WBC count is not improving. I have to stop the shots and they cut my pills in half. I was at a ZERO viral count. Maybe the 3 months of treatment killed the virus and maybe it will not rebound. I hope so. My arms and legs are NOW covered in an itchy red rash. Why now?? After stopping all those meds? :(

thank god for people like steven tyler, and naomi judd comeing forward on this subject. i took the 48 week treatment also and completed it the first of oct. 2006. with positive results so far. that was one hell of a ride as you know. i guess what my question is, it has been a year since and i dont seem to be as healthy as i think i should be. i forgot to add, that i had to take nupegen twice a week to keep blood counts up along with the iterfuron and rivablavin or how ever you spell both of them. i cant find answers from anyone, as to will the rough, no energy, pain filled days go away. i will be 55 in nov. so i know age plays into it somewhat. im going to blooming, il. in nov. this year to see naomi judd, she is giveing a free talk on this subject, with a question and answer after. is there any one with these same after effects. im like the other nam vet on here, they think thats where it came from. come on peoples, lets keep getting the word out there, we need you steven. thank you for your help.

PLEASE DELETE MY COMMENT, THANK YOU

Yes, I know as I have Chronic Hep C, not thru drugs, but by transfusion, and the chemo, pegetron is a very rough treatment. I am so glad you finished it Steve Tyler, and I have been waiting a long time for you to go on Oprah as you know she has the power to make this HAPPEN. People will get tested, and this horrid disease of Hepatitis C will be out in the open. But, make sure you just don't blame it on drugs. It's from Blood to Blood, and it is a silent killer. Please come thru with you saying you will go on Oprah. It's now June 15, 2007 and I haven't seen you there yet. I know she would love to do this story with you. Thank you Sherylspirit

I am almost 2 years post liver transplant diagnosed with chronic hep c, geno-type 1b and nine months into the therapy. Yes, it is the hardest thing I have ever done in my life but the results are worth it. My ALT was at 296 one year post transplant and developing stage III fibrosis on my new liver. The combo drug therapy does have an anti-fibrotic effect on the liver and have been undectable since week 12 of the therapy. I have seven weeks of the drugs left and am still undectable at this time. I advise anyone with this disease to do the drug therapy and prepare for the worst 11 months of your life. This is not for sissy's, you must have mental toughness and character and not give in. Complete the therapy. I was "Treatment naive" which is a positive in my favor. Good luck to all entering into this therapy and those already on it. This is not for the feint of heart, get angry and get tough.

IS STEVEN TYLER STILL FREE OF HIS HCV. OR DID HE RELAPSE AS MOST DO

I am happy to hear that Steven is talking about the hepatitis C epidemic, I first heard that he had went though the treatment on the Lewis and Floorwax show on the The Fox radio here in Denver, CO. I am about ready to start the treatment for the second time in my life. And I felt good when I heard the broadcast on the radio. With the stigmata of the disease and what people do not know about it can make it a very deadly disease with getting the proper press needed to inform the public about its dangers. Only 1 out of every 3 people having the disease, know that they have hepatitis C.

Hello, My name is Bobby Japhet and I found out in 1998 that I had Hepatitis C, and cirrhosis. I have been on 4 different treatments and I'm a non-responder. I'm a geno-type 1b. The doctors have told me that my only chance is a liver transplant. My last 2 treatments were a Phase 2a, and a Phase 1a clinical trial. I'm never going to quit trying to Slay The Dragon, and informing the public about the virus. I started a Hepatitis Support Group here in San Antonio, I have a web page at myspace.com/hepc_dragon_slayers or rfj@satx.rr.com., and I'm involved with 3 other online support groups. I know what may be in store for me due to me having my cirrhosis for so long, the doctors said I've had it for at least 20 years already, but until the good Lord takes me home, I will try and inform every person I can about the Hepatitis C Virus. I have all sorts of problems that have been caused by what the virus has done to my body already. I pray everyday that some group will take up the cause for the research and funding for people in need of treatments, finical care, support groups, and fund raisers for Hepatitis C Awareness so we can one day "Slay The Dragon", like Liz Taylor and her friends have done for the HIV/AIDS virus. God Bless, Bobby Japhet

Myself & many many others have contacted Oprah numerous times as well as all the other talk show hosts & media to NO avail. We never even get a reply back. "Hep C" The BIG BAD SECRET they DON'T want to talk about.

I look forward to seeing Steven Tyler on Oprah; and I hope Oprah makes an effort to get a few ordinary people on the show, too. While many do not want to be identified, others would relish the opportunity to share their stories of hepC. In my case, I was asymptomatic, healthier than I had ever been (or so I thought), and met none of the known risk factors. Bottom line is it doesn't matter how it is contracted.

I'm glad Steve Tyler came out and stated he in fact has hepatitis C. A lot of people look up to Mr. Tyler and maybe having someone people trust and know of will listen to him easier and with more trust vs hearing about someone they don't know and if indeed that the person stating they have hepatitis c, if that person really even cares in helping others. I think i can safely assume one of Mr. Tylers reasons for coming out with this is to let people know, DISEASE DOES NOT DISCRIMINATE. ANITA

The silent killer is absolutely right. I have had it for many years and it was not found until I had severe liver damage. I was diagnosed in 3/06 and am on week 13 of 48 weeks. I still have along road ahead, but watching the Access Hollywood video of Steve Tyler, which I have saved to my favorites, has given me hope again. I will repaly the video whenever I start to get down. This treatment is very tough and it plays games with yoour head so sometimes you find yourself asking "Is it worth it?" I sure hope that he does go on Oprah. It's amazing how no one seems to know anything about this disease yet more people are infected with it than HIV. My friends and I are in health care and not much is taught about it. I couldn't believe the stats when I started to read up on it. Thanks Steve for coming out with this.

I am a caregiver to my husband who is at endstage, he never did treatment because by the time he found out it was to late and he was too sick. I say try treatment, if it makes you to sick at least you tried. We need to also get awareness out there and for the goverment to spend more money on finding a cure, regardless of what a doctor tells you there is no way you are cured, try donating blood, then tell me your cured. put the word out there, hope people become aware and get tested.

Here are the companies who offer free meds. For people needing Infergen the company is intermune and contact number is 1-888-696-8036 & Schering for intron A,rebetron,peg-intron,peg-intron/with rebetol or ribaviran, and their program is called a commitment to care the number is 1-800-521-7157 For people needing Roferon A,pegasys,pegasys/copegus is the company is Roche contact number is Pegassist at 1-877-734-2797 and for Epivir the contact number for them is 1-800-722-9294. Another place to find assistance is called www.needymeds.com they give all necessary info for people to get help. Meds are delivered free of charge they supply everything needed including sharps container,all needles,alcohol swabs bandaids and they give you a bag needed for when traveling to carry your meds

By clicking on this link you can make your voice heard all the way to the president. Take advantage of this you owe it to yourself & to everyone else with Hep "C" It only takes a minute to do. We all complain about our situation so complain to the people who are suppose to represent you. http://www.congress.org/congressorg/home/ DRSLETMEDOWN

DRSLETMEDOWN Hep C Support Group www.myspace.com/hepcsupportgroup http://groups.msn.com/HEPCSUPPORTGROUP Like the well known throughout Hep "C" Circles ( Bek's Letter ) I hope this will make it's way around as well. It's intent is to make people think & hopefully bring about change. I hope it ends up on the desks of lot's of politicians & physicians. First off to have been treated by the medical profession as though all my complaints were in my head for 15 years really wore me down & almost had me questioning myself but I knew my pains & ailments were real. To have had high liver counts for all those years & not one of the many doctors I had seen ever mentioned it ( WHY ? ) They took away my ability to know not to drink alcohol for that time frame. Drinking those 15 years certainly did not help my situation. (WHY ? ) did I have to educate myself to the point of basically having to beg my primary to do a Hep C test. The result was not what I wanted but now it had a name. I could prove to all the nay sayers in my life including my wife that yes there was indeed something wrong. I did not just enjoy complaining about how bad I felt. All the aches & pains, joints, muscles ect. Not being able to sleep, tossing & turning all night. Stupid tests for sleep apnea, put gel in your hair & hook you up to wires & make you look like Frankenstein. Then tell you to go to sleep which you already can't do in a strange environment because your good old insurance company surely won't pay to have this done at home where it should be done. The guy giving you the test falls asleep but tells you that you slept 6 hours when you know you did not sleep at all. You ask how long he has been giving tests to be told he used to hang sheetrock for a living until a friend got him the job. You search your doctors backgrounds only to find out about all the complaints against them. Even with insurance which at this time 9/27/06 costs us over $600.00 a month for the PPO version you still are treated as OH NO here comes another insurance patient. Make appointments weeks in advance only to sit in waiting rooms hours past your appoinment time ( WHY ? ) Do full waiting rooms make doctors feel important ? It takes forever to find a doctor through an insurance companies provider book & most don't speak English all that well & about the time you start to feel comfortable with the doctor you have chosen if you work for DISD the Dallas Independant School District they change insurance companies & the doctor you had is not listed with the new insurance company so you have to start all over. I have been researching Hep C for almost 5 years since I found out I have it & it is amazing to me how the information changes almost daily. Yes I understand that until 1990 there was not a test for Hep C they called it non A non B. With liver counts almost tripple the high end of normal I still can't understand why none of the doctors I had seen including two different hospitals ever mentioned it to me. I had to get my own medical records for the last 15 years to see it for myself & it was appalling. It made me sick to my stomach to think that so many so called medical professionals could be this negligent. My take is you better ask for & see for yourself what's in your medical records & keep copies. The really scary part is that I have no doubt I know more than most of the doctors I see & that is scary when you have to tell them what you want done & what the normal protocal is. I was basically told if I was not going to treat & by the way the doctor said I will treat you with or without a biopsy. That made no sense if he did not know my livers condition why would you treat other than the money you would make. I have no doubt it is more about the money than what is in the patients best interest. I was told just come back yearly & we will re check everything. I did that & this time he did no PCR, NO LIVER SONOGRAM. He said if you are not treating it really does not matter ( the numbers ). BULL I SAY ! If you don't do it then you have nothing to compare to. It's just another way of the insurance companies controlling what doctors do & don't do. Against popular belief if you talk to doctors that are not on your policy & that would see you if you could afford them they ALL tell me that a person with chronic hep c should have blood work every three to six months & a sonogram & PCR every six months. You are told depending on what you read & who you listen to that it is almost impossible to get hep c sexually. That it is more likely to happen if at all from man to woman verses woman to man. WAIT A MINUTE ! that's talking out of both sides of your mouth. If I have learned anything in my journey for information it's not to believe everything I read or that I am told regardless of the source. There is too much money to be made by too many people to get a quick fix. It used to be TREAT,TREAT,TREAT now that is changing to what I had said all along ( WHY ? ) would someone that is not really sick already put toxic stuff in their body knowing that the odds of long term ( SVR ) remission are not that good. If I were really sick already then I am sure I would give treatment a try. It's just not for everyone & needs to be well thought out. Then there is that disability thing that the goverment does not want to acknowledge so another battle to have to fight. The stigma that HEP C came from shooting IV drugs & for some it did but there are plenty of us that got it other ways & I still say sex is one of them depending on what & where you read anywhere from 5% to 15 %. Protect the people you love & have sex with that is just good sense you owe that to another human being. At the very least discuss the fact that you have hep c & let them decide if they want to have unprotected sex. This is a very sore subject for most people because they don't want to have to use protection. For those who's spouses are not infected & choose not to use protection I say you are Playing Russian roulette & good luck. My wife of 22 years in a momogamus relationship now has hep c & the same geno type as mine. We were not having any wild & kinky rough sex. Neither of us has tattoos, piercings, ever did IV drugs, had surgeries or recieved blood transfusions. I do believe that it came from unsterile practices & that could have been just about anywhere. The doctor from shots or the dentist, next time you go ask to look at all the aquarium like tubing that connects to things they put in your mouth. Trust me it's not a pretty site & it has been talked about on most major prime time TV shows BUT THEY DON'T & WON'T talk about Hep C. Even if they have the proper sterilazation equiptment who is to say after a long hard day that the person responsible to see that it gets done really does it ? there should be a back up fool proof system in place. Everyone will admit to cutting corners at work especially if you have plans. Even recently many people were infected in a hospital by careless non caring so called professionals. I saw Pamela Anderson of baywatch fame on the tonight show with Jay Lenno. I thought she was our new poster girl & gonna' get out the word. Hep C was never mentioned at all so a huge audience missed being informed by her silence. Most people know NADA, NOTHING, ZILCH about this disease & that is not gonna' change until we all make demands on our politicians, the medical profession, & the news media & demand the truth about this disease be told. Bigger than aids & spreading faster & most people do not have a clue. WHAT IS THE GOVERMENT AFRAID OF ? THE TRUTH ? IF SO WHY ? Those shots they all gave us as kids to keep from catching this & that they were made with blood products. All I have to say is this is not an IV drug user only disease as many seem to want the public to believe. If we don't unite together & make our voices heard the younger generation is doomed in my opinion. This disease can be controlled & there are people who need to treat & do it now just not everyone. This is not a disease that has a universal treatment plan that just because you have hep c this is what you do. I wish it were that easy. Educate yourself so you can make educated decisions, share what you learn & get the word out. For all those who have treated & failed & are treating again I admire your courage & I pray you become hep c free forever & I know it works for some & they stay virus free. For the rest of us I pray for better treatments with less toxic side effects & better overall long term results. I hope if nothing else this will make you think & use good judgement in however you deal with this disease. I have met some great caring & wonderful people through this journey & you know who you are. You share what you know & give others hope. We all deserve better than what we can currently get & it will take us all to bring about that change. Make your voice heard at every level. Write letters to all your elected officials, organize groups & do your part to bring about change. I did the hep A&B vaccines & highly reccomend you get yours you don't want A or B on top of C. I did the Twinrix combo it's A&B together & saves you two injections by not doing the A&B seperately. My A took my B did not. I finally got the alternative to a biopsy it's called Fibrosure & is done at any Lab Corp & does not have the risk of a biopsy since it is done with blood. ( God Bless Us All )

My wife & I both have Hep C & have known for almost 5 years. I have done nothing but research since finding out & hope everyone that reads this will check out my Hep C Support Group Sites. We need to get the truthful message about this disease out. My wife & myself have been married 22 years & NEVER did IV drugs, have NO tattoos or piercings, NO surgeries or blood transfusions & fit NO at risk groups. This is MUCH MORE than a drug users disease & people need to know the TRUTH. UNITED WE CAN MAKE A DIFFERENCE. www.myspace.com/hepcsupportgroup http://groups.msn.com/HEPCSUPPORTGROUP

I would love to see someone on Oprah who has Hep C speak out and make it more widely known. People need to be more aware of this. More and more people are diagnosed every day and it's just as bad as HIV, yet so little is known about it. My fiance is 4 months post 48 week treatment and is still dealing with the side effects. Thankfully he cleared, we find out end of November if it still is. Fingers crossed! The treatment can help some people and some it doesn't take. Everyone is different. But it doesn't 'cure' anyone. The treatment can create a sustained virilogical response (in remission). Hopefully one day there will be a real cure for it that isn't as bad as the disease!! Everyone who has had this please, take care and inform yourself to the fullest. Those who don't - Get Tested!! Take care, Nep75

Hepatitis C!!! I contracted hepC in 1968 in vietnam from 1 of 3 or maybe all 3 transfusions of tainted* whole blood products. * contaminated with an unknown blood born virus. Treated in 2001 and I have been in remission 5+ years. Spread The Awareness Nationwide!!!!!!!!!

mimijill, It is sad that you are so uninformed. Of course, Steven Tyler had hepatitis c, genotype 1a and is now undetectable (no virus in his veins; i.e. cured). I, personally, know many that have had genotype 1 (a or b) and are now virus free. Many more will take interferon and ribavirin be cured. I am sorry this is not the case for you thus far, but misinforming others will not help your case or karma. I am on interferon currently, and share a common and daily dialogue with many current, previous and future users of interferon. We do win this battle, regularly. Many I speak with have. Even with its many side effects and contraindications, interferon (pegintron or pegasys) is the standard of current medical care. Yes, it is a difficult and, often, harrowing course of treatment. But, to devalue the worth of this treatment is to devalue the sacrifice of the many that fight this affliction daily. Perhaps, as a community, we might focus on encouraging people to get tested, inform our world of this disease and make some headway against a new treatment regime, rather than promoting discouragement. The person you discourage may die, when, in fact, they could have been cured were it not for the untimely reading or your words. There are fathers and sons, wives and daughters and young children dying everyday from Hep C and subsequent liver complications (cirrhosis and/or cancer). And while a significant number of these people may have contracted Hep C from at risk behaviors, at least 40% of us have no idea where we caught this disease—clearly from poor sterilization techniques and a doctor or dentist, the tattoo parlor on the corner, air vaccination guns, or blood transfusions from 1992 or earlier. To win this battle is our only hope; we fight for our families, or children, ourselves and our lives. Besides being clinically false; to say the treatment does not work, is to steal hope from those that suffer from, and fight daily, this disease. I am disheartened that someone with hepatitis C would chose to be part of the problem rather than focusing on being part of the cure. May your liver treat you well… Peace,

Great to hear more & more celebritues coming out with their own 'horror' stories of living with HepC! I too was on the interferon therapy, twice. I am a non-responder. One of the most powerful things I learned along my journey is that IF you get diagnosed, through blood tests that you have Hepatitis C, the very next test you should get is your 'geno-type' test. IF you find out out you have type 1, DO NOT waste your time on Interferon treatment. It is a medical fact that Hepatitis C, geon-type 1, does not respond to interferon or rebetron. Rebetron is a combination of interferon and ribavirin, which is the current and has been the common treatment for Hep C for years. I did the standard 3 million units 3 times a week, but after 8 months, no response, so my doctor stopped the treatment. I saw a doctor on an affiliate NBC channel out of Providence, RI and decided to go see him after thinking about it for almost a year. I then went on a c**ktail on interferon, ribavirin, amantadine and feloxin (not sure of that one's spelling, at the moment), anyway the interferon I was taking, was now up to 18 million units a week. Yes, it almost killed me too..One of the best $6.95 you could ever spend, should be on a book called "Hepatitis A to G" The facts you need to know about all the forms of this dangerous disease. Written by Alan Berkman, M.D., Medical Director, HIV Center for Clinical and Behavioral Research, Columbia University and Nicholas Bakalar. (Warner Books)