Posts Tagged ‘Boceprevir Telaprevir’

Natalie Cole’s Health Battle With Hepatitis C w/ Mary Hart on The Early Show… “That Interferon is really serious.”

Posted: October 21, 2011 in Uncategorized
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Great to see she is finally addressing her Hepatitis C. I wonder how many years total it lay dormant? What a hell of a disease. She walked around for 20 years just fine and then it hits her like a mack truck. Well I’m glad she’s speaking openly about it and doesn’t credit sloppy tattoo parlors like ole Gregg blames. Truth is one hell of a character trait these days, and Natalie seems to be facing things head on and without shame, and that is awesome. Also great news that she’s doing Interferon and not Ozone or Nitrus Oxide for Pete’s sake like Anthony Kiedis from Red Hot Chili Peppers, but actual Interferon like we all are told to do. I hope to hell she doesn’t suffer the post TX, or Post Interferon Syndrome so many of us are going through now. I blogged a bit about it on medhelp which is available via the link below, and basically as I state it seems to affect clear thinking, headaches, joint pain and the like. Nothing new, but still as far as I can tell being totally ignored by the medical community as a whole. And what’s good news for Interferon patients moving forward, is with Telapravir hopefully that number of people suffering from Post Interferon Syndrome will be even more dramatically reduced. It’s good news for people in general, but it doesn’t really help me or the others who are suffering extensively, from symptoms that are hard to prove, but exist in a multitude of us, as is reflected in this forum:

http://www.medhelp.org/posts/Hepatitis-C/Long-term-side-effects-of-interferon/show/866107

I just read someone state simply : “Had I known the fog Interferon would put me in, I would have made my peace with God and enjoyed what little time I had left.” Someone else stated, “Yes my husband beat HCV over 10 years ago but now lives in a constant state of depression.” Those are just in the last few handful of posts. I certainly don’t wish for Natalie Cole to experience any post TX symptoms as I have, but if she does, or if Steven Tyler or Gregg Allman did and spoke up about them, maybe somebody would listen.

On the forum it talks about the Mayo Clinic recognizing Post Interferon Syndrome as a real issue, but it was never documented, cited, ie proven. I would like to see real research done to see if it affects hormones, blood levels, immunity, etc. Everything seems to be out of whack for me and obviously we’re not imagining it if there are hundreds of people from all over the country explaining the same symptoms. I’m around 3.5 years out from Interferon and still wake up everyday with a massive headache, I mean, that is not normal. Perhaps Natalie Cole will experience some of those same issues and begin to be a voice for folks, for God knows nobody else has done it.

There is a Doctor who posted even in that Medhelp thread, but I reached out to her personally and she didn’t respond. Her explanation of side effects is stunning, it’s worth reading, but basically she talks about not being able to complete the multitasking she used to be so capable of and having to resign as a Doctor of Medicine. I mean, you would think she would have the leverage to get people to listen, but I guess you’re talking about a multi billion dollar pharma industry, and these guys have power. Pharma is the Crown Jewel of the American Industrial Empire, and I suppose they aren’t about to take down a multi billion dollar line of products, especially when no matter what our complaints, it’s better for public health to get rid of Hepatitis C, than it is to wait until the “cure” has less long term permanent side effects. For the greater good, better to cure it now, stop it’s spread, than worry about what that “cure” does to people’s brains, especially when on paper, and through standard blood work, it looks as though they are fine. Those permanent side effects are much more difficult to measure, in fact it would take comprehensive aptitude tests taken before and after, and that doesn’t really fall under the gastroenterology field, they would need to bring in Neurologists and maybe even Psychiatrists to really measure brain function before and after Interferon and again, it still wouldn’t be better for the public, greater good, than curing it, no matter what. Still, telling people, they will only suffer “flu like symptoms” for a 12 months, is a bald faced lie. If I’d known a fraction of what I know now, I’d have at least waited until it was a more pressing case of Hep C before starting Interferon. Now that we are here though, I just want to know if there is anything we can do to improve our state of mind moving forward. Hormones, steroids, vitamins, anything.

Sadly without a voice, I don’t believe a single study is being done to even qualify our issue as a valid one. It could all change in a New York Minute though, and I do read of lots of people who don’t suffer these symptoms. Maybe it was because I administered these shots myself for 48 weeks, maybe I overdosed a couple of times. Lord knows I’m an over achiever, and overdosed  a few times on the recreational stuff, though never significantly enough for death or a stomach pumping. Still perhaps my lack of health insurance and self-administering exacerbated the problem. I don’t know. Maybe it will clear after year 4 post Interferon. God I hope so, I really wish I didn’t get the headaches and brain fog. Maybe someone with credentials, or fame will give the syndrome a voice, and we will get studied and fixed. I don’t know, I’m gonna keep on keeping on, I didn’t get sober to bow out or give up, but this is certainly been challenging as hell, it’s persistence daunting.

And again, even with all that said, I am glad to be Hep C free. My liver enzymes were through the roof, and a friend of mine just had his come back after going through Interferon twice, once for a year, and once for a year and a half, and it’s come back. Now they think they’ll treat with Telaprevir. And he states he doesn’t get the brain fog, so it’s just weird. I’m glad it’s gone, and I’m glad he can treat now with Telaprevir with odds of 80% instead of 50%. God willing he’ll beat it, and God willing this fog and pain will fade away. I am grateful to be alive, I just wish more was being done to address the long term implications of Post Interferon Syndrome so many of us seem to be experiencing.

If you haven’t please check out my journey of sobriety, Hep C, and Interferon for free on http://www.books4free.com and of course on Amazon:

– Jared Bryan Smith

Gregg Allman – Hepatitis C – Latest CNN Interview

Posted: July 14, 2011 in Uncategorized
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I’m too lazy to go look but I wonder if his albums sell under the huge multimedia Time Warner banner?

He STILL denies having gotten the drug through any kind of drug use, and even adds, “It doesn’t much matter how you got it, you got it.” And this is true, but MUCH more people get Hepatitis C now a days via needles and or sharing straws, which never occured to me while I was out there drinking and drugging, than do by using dirty tattoo needles. Ironically, I just returned from Macon GA and for some reason I believe the bucket story now. That probably is exactly how he got it, and ohhh how disgusting.

It is still humble and cool of him to come out and speak about Hep C, and that he’d gotten a liver transplant of a 29 year old liver, and even more shocking I thought, was that the CNN announcer mentions that he still has Hep C, and that he is living with it. So he was not cured of the virus at all? I wonder if they will try and run him through the new Telaprevir with the higher success rates. I hope so, I hope they can clear him of the virus as they did me, but as Dr. Hutchinson from Duke told me “the young do better than the old.” I wonder what his prognosis is for Interferon with the new drugs, and if the liver transplant makes it impossible to go under Interferon or somehow prevents the full blown chemo like side affects? Still, I may have been a little harsh when I blogged about Gregg before, denying any drug use and stating that he’d gotten it from dirty tattoo needles. In the big scheme of things, it doesn’t really matter how you get it, none of us invented the disease, it matters what you do with it, and if you man up and fight it, quit drinking, and persevere through all the long odds to beat the nasty little beat me down.

Still, I’d be happier if he’d use his name to go out and promote free Interferon use with Telaprevir to all, I mean, they shortened the length of time, doubling the odds, but also doubling the cost. Most of us don’t have Rock Star retirement plans. And it’s the kind of thing that with a concentrated government effort, they could eradicate just like polio, instead of just bilking people left and right.

Let me tell you too, if I find out he’s working for Roche or Merck and this was a publicity stunt for some new medication they are charging triple for, and he still couldn’t admit he’d gotten it using needles, then I’ll be just as irritated. Or to find out his rock star royalty got him the transplant liver faster, that would be just as aggravating. On this one it is probably better I don’t do any research. For now, Gregg has my compassion and sympathy and even my thanks for doing this interview, regardless of if it’s connected to his record sales, and/or paid pharma giants, more than likely even if all that was true, his agent just tugged his heart strings and Gregg was just doing what he thought was right.

He’s still one of the baddest musicians ever to walk the planet. I pray his recovery from Hep C and his transplant stays strong and that he’s able to go through the new Interferon treatments with telaprevir and beats it.

-Jared Bryan Smith

Heart Warming Review of Hippopotamus Sea: My Viral Sobriety

Posted: June 16, 2011 in Uncategorized
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As most alcoholics, I am often childish, oversensitive, and grandiose.

I’ve spent a lot of time wondering if writing this book was even a good idea, and I constantly worry about the harm I’ve done in being so brutally honest about my life, and especially in my sobriety, but ultimately I always come back to if I’m honest,  I have nothing to fear. Even with that knowledge, I am often saddened by the misunderstandings I may have inadvertently caused, or complications my gut level honesty may have arisen. A friend of mine has a bumper sticker that reads “First do no harm.” Which is the beginning of the Hippocratic Oath, which Doctors take, but I take it personally almost every time I read it. I really never intended on ever hurting anyone, especially anyone I loved. But a lot of unexpected, uncharted things happen when you write a book, or when you write in general. It is not for the faint of heart. You open up a vein and bleed into a keyboard, then wait as everyone dissects and examines the blood telling you just what’s wrong with it all, just what blood borne diseases your carrying around and how it affects them somehow, who choose to read it. It is often times more pain that I would have imagined it would be. I’m not good at criticism, constructive or otherwise.

Occasionally I get a note that makes it all worth while though. A week or so  ago I heard from a friend that had cleared Hepatitis C as an early responder, and that was definitely one of those days. He had read my book, and so that was definitely uplifting, but this review that a perfect stranger left on the blog wall yesterday, is absolutely the best one I’ve received in a long time.

“I have read three books on recovery in the last 2 months. The other 2 by well known authors.

YOUR BOOK spoke to me.. The other 2 seemed like a lot of dribble.

After all their words maybe, just maybe… in the very end did they say anything  to me.

YOUR book touched my mind and my soul   from the very first sentence..

Thank you and please keep writing !! Your amazing.

cc golem ”

Thanks so much CC! I really do appreciate it. For all I’ve lost in writing this book, knowing that a few people have been moved by the story is enough to solidify leaving the book up.

In the process of self publishing I’ve learned a lot about the mechanics of the publishing industry. I am tormented by the thought of taking it all down and just walking away from it all. I think I am probably not the first writer to have these thoughts. I wonder if it’s a good idea for me to control the entire process. I know there are parts of the process that could be handled better by others. For instance, I feel bad pimping my own pain. Having a literary agent would help with that. I feel terrible publicizing the book title on my own in different forums, and after just a few negative comments from overposting, I stopped all together. Then I get bitter at the lack of commercial success, and wonder how many women I’ve known just in the last year who’ve been pushed away by the content or their misunderstanding of what it means to be cured of Hep C, and I wonder, should I just take it all down?

And then I get a decent review, and I remember, that I didn’t write it for glory, or vanity, but to help other struggling alcoholics, or better yet, specifically people facing the daunting challenged of Hepatitis C. There are more options than 4 years ago when I went through it, the pain and duration of Interferon has been cut in half using Telaprevir or Boceprevir Telaprevir, but of course as the pharmaceutical industry is apt to do, since it’s half the time, it’s twice the cost, and most of us suffering from Hepatitis C, weren’t exactly on the tail end of financial windfalls, so the odds can still seem insurmountable, I’m sure. But at every corner in my journey of sobriety, God was there, every step of the way, I knew what the right thing to do was, and I was rewarded every time I took the next right step. Today, at 4.5 years sober the next right thing is just leaving the book and the blog up, regardless of personal pain or loneliness it may cause.

The occasional reader finds inspiration and that must be why God so compelled me to write it.

Thanks again CC, I appreciate the kind words more than you know. Please do me a huge favor and leave the reviews on Smashwords as well, which the link can be found under the picture of the book. I have a ton of good ones on Amazon but Smashwords is a bit bare for reviews. Thanks again so much!

– Jared Bryan Smith