Posts Tagged ‘Interferon side effects’

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

“The weak can never forgive. Forgiveness is the attribute of the strong.” Mahatma Gandhi

Posted: June 29, 2011 in Uncategorized
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Woke up feeling refreshed and recharged, better than I have in several days. Probably because I worked out a small feud with someone whom I really never had anything against to begin with, but whom I did repeat a nasty rumor I’d heard, thus inciting a grudge that lasted way longer than it should have, and had farther reaching ramifications than I could have ever imagined. We made amends to each other and damn if I don’t feel 10 times better for it for my part.

Reminded me of a christian value that I wish I had followed earlier, because it really did bring an instant peace and calm into my life as soon as we were done talking.

Matthew 18:15 “Moreover if thy brother shall trespass against thee, go and tell him his fault between thee and him alone: if he shall hear thee, thou hast gained thy brother.”

Pretty moving stuff… and just a few sentences later:

Matthew 18:19 “I tell you that if two of you on Earth agree about anything you ask for, it will be done for you by my Father in Heaven. for where two or three come together in my name, there I am with them.”

Well that parable to me, sums up the magic of an AA meeting perfectly. For years I would try to get sober all by myself and never get more than 2 weeks, tops, and then my very first half ass try into AA, where two or more people are trying to accomplish the same goal, and lo and behold I was able to stay sober for a month… and that was without getting a sponsor or working any steps… The forgiveness thing, for me anyway, is more in the Masters / Phd realm of AA, as my anger, once up is really hard to get back down… but I don’t have to think my way into right action, I have to act my way into right thinking, and the act of forgiveness, humility and an open conversation with my brother in sobriety, brought about the forgiveness I wouldn’t have thought possible.

And even if you must discount the religious mumbo jumbo, I found science to back the claims as well, the positive affects of forgiveness transcend even religion, and stab deep into the heart of science as well.

“Dr. Robert Enright from the University of Wisconsin–Madison founded the International Forgiveness Institute and is considered the initiator of forgiveness studies. He developed a 20-Step Process Model of Forgiveness.[4] Recent work has focused on what kind of person is more likely to be forgiving. A longitudinal study showed that people who were generally more neurotic, angry and hostile in life were less likely to forgive another person even after a long time had passed. Specifically, these people were more likely to still avoid their transgressor and want to enact revenge upon them two and a half years after the transgression.[5]

Studies show that people who forgive are happier and healthier than those who hold resentments.[6] The first study to look at how forgiveness improves physical health discovered that when people think about forgiving an offender it leads to improved functioning in their cardiovascular and nervous systems.[7] Another study at the University of Wisconsin found the more forgiving people were, the less they suffered from a wide range of illnesses. The less forgiving people reported a greater number of health problems.” 

I am glad it is behind me, once and for all, I truly wish my brother in arms, traveler on Earth with the same disease of addiction as me, the best sobriety has to offer.

Jared Bryan Smith

Living Sober – Exercise, Insomnia, AA, Dr. Amen and Chemical Imbalances (SPECT Scans)

Posted: March 14, 2011 in Uncategorized
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In 2008 I had just finished over a year of grueling, miserable Interferon Treatment which cured my Hep C, but which was hell. Even after quitting the Interferon I continued to suffer extreme headaches and it felt like some days I was better off while on Interferon. All you can do at that point though is just power through and hope for the best. For me that meant praying the treatment would be successful and it hadn’t all been in vain. For me, it was worth it, I was cured of Hep C, but for far too many, or roughly 50% of the people who do the year-long Interferon treatment, they don’t get cured and still must suffer all the long-term horrific side effects that the scientific, or maybe just the pharmaceutical community downplay so effectively here in the states. I’m lucky because at least my constant headaches, aches and pains mean I am at least cured of Hepatitis C. But in that first month when I wasn’t quite sure yet, since they must let you be off the Interferon for six months before they will pronounce you “cured”, I just had to wait, suffer and wonder. During that time I saw a PBS show that covered the science of the brain.

Dr. Daniel Amen as it turns out was using a new technique to study the brain, and I found it absolutely fascinating, primarily because I was facing so many changes in my own mind, having suffered from the disease of addiction and alcoholism, literally losing my mind, and then in 2008 at roughly 1.5 years sober, recovering from a year-long assault on my mind in the form of Interferon, in the name of curing Hep C. Some of the things his scans showed, called SPECT Scans, were freaking amazing. Mainly that the alcoholic brain in the SPECT scans looked empty and riddled with holes for roughly 12 months after the alcoholic quit drinking! That it took over a year for the alcoholic mind to get back to normal blew my mind, but it made perfect sense. Also he had data showing clearly worse recovery rates of the brain of people who used harder drugs like methamphetamine’s, Cocaine and LSD (lucky me). To me, this looked like conclusive evidence, and the only data I’d ever really seen portrayed as efficiently. Having gotten sober myself, and thinking, hell after 30 days, or 90 days I should be just fine, be right back to normal, and that obviously not happening, I was very glad to see hard data showing that it took longer than I had expected to return to a state of normalcy, and furthermore he had done even more research into the mind, and even delved into looking at the Pharmaceutical Industry’s cure alls, anti depressants, ADHD medication, and even anti anxiety medication. This guy had really done his research with thousands of patients, and the data he shared on the PBS special I was watching was mind-blowing. For one thing I fully expected him to endorse all the meds out there thrown to the American populus but in fact his data refuted it.

I don’t have the charts or the graphs he used in front of me, but let me just give you the gist, and if you’re in a similar situation as I was back then, at least do yourself the favor of researching Dr. Amen’s data yourself, as I include a link at the bottom of this blog.

As I was recovering from a year long fight with Interferon, depression, and roughly 20 years of addiction and suffering from terrible bouts of sadness and more acutely headaches, getting on antidepressants or medications was a serious consideration. The only thing holding me back from it was the experience I’d had with it just before I began Inteferon which was that when I began taking Wellbutrin my cravings to drink and drug went through the roof. As my sponsor told me it was disconnecting me from the spirit, just like a drink or a drug would do. But still I was suffering so I was still considering trying the softer easier way of medications again, especially now that I had over a year sober. I wasn’t making the decision lightly though, and watching this special ultimately made me try exercise instead. As I remember the presentation, what he basically said was that, yes, you could get temporary results against depression and ADHD from medicines but the chart basically showed that like with any drug, to continue experiencing the favored results you would need to continue increasing your dosage, and also you would experience side effects that came along with the drugs, and as you increased your dosage, you would increase you side effects. One of the major side effects being sexual. Well, sorry folks, but fuck that. I like my sexual prowess to remain unaffected, haha. That basically sealed the deal for me but he continued, showing the same chart of moods, but instead of countering them with medicines and pharmaceuticals, countering them with an exercise regimen, that also increased along as your body became more and more capable of handling the work out. The data was spellbinding to me. Basically, the mood stabilizations were equal if not greater than that of the same patients using medicines, except that sexual side effects weren’t experienced, in fact quite the opposite, sex became more enjoyable in my case once I got in shape, and also exercise is free, as well as you didn’t have the other side effects of dry mouth, nausea, etc. and more importantly, you weren’t becoming dependent on chemicals. The effects of exercise long-term, were more effective at creating the natural chemicals in your mind that ultimately make you feel better.

And to back it all up he shared brain scans of different patients using the two different methods, of exercise vs chemical dependency, because that’s what anti depressants become, even if they are prescribed by Doctors, and low and behold the patients with just exercise mind’s were much better in those scans a year later than those who were relying on pharmaceuticals. And yet people still choose the softer easier way and come into the rooms of AA overloaded with prescriptions and anti anxiety medicines, and ultimately, if they make it and that’s a big if, they’ve just switched dependencies.

I’m not a Dr. and AA doesn’t have an opinion on medications, but the data Dr. Amen showed was clear and I’m glad I saw it. Please check out the scans at the link below and I’ll also add his blog to my blogroll as it is fascinating information. And yes I am fully aware of his critics and those that discredit those SPECT scans, but the arguments seem to me much like telling Columbus the world was flat. People on the forefront of technology are constantly getting attacked, and also, for someone so blatantly talking about the ineffectiveness of the pharmaceutical industries cure alls that are over prescribed wish lists of symptom treaters, I would expect nothing less than a full on counter attack. Fuck em the data makes sense to me because I lived it.

Based on his data and the show’s I’ve since incorporated exercise into my program of recovery, and it makes a HUGE difference. If I don’t work out even just for a couple of days, I become prone to depression, and thoughts, although they pass quickly, of the chronic “Fuck It’s” we in recover are prone to. Nothing like the obsession of early recovery mind you, as I am free of that obsession, thank God, but still, if I don’t work out, I definitely can feel a difference. And again, my experience with meds was that they made me feel less connected, where as working out, I experience endorphin rushes, runners high, and after wards often feel as good as having just had sex… well maybe not that good, but closer than I ever have with the meds I’ve flirted with in recovery. Bottom line, though our literature only mentions exercise in one book, “Living Sober” it sure as hell has made a huge difference in my recovery, and I wish we had more studies regarding it’s long term positive effects, versus that of prescribed medications because though Dr. Amen’s data was conclusive to me, there is still a lot of debate out there, and I’d love to see the issue settled, with hard conclusive facts.

I would really also love for Dr. Amen to do a specific study of the brain effects, before and afterwards of both Chemo and interferon patients, and maybe he has and I just haven’t seen it. Because the scientific community claims it doesn’t affect the brain but I’m here to tell you there are long term ramifications to interferon, I can no longer do math in my head, remember names as well, and more and though they may not be able to prove it through blood work, I wonder if Dr. Amen’s scans show a difference.

Oh the other thing I definitely wanted to mention, and if you’ve ever spent ANY amount of time in the rooms of AA or NA this is something you constantly hear, “but I’m an insomniac, or I have trouble sleeping.” Exercise is the BEST way on Earth to counter insomnia. Nobody, and I mean nobody on Earth goes through boot camp, and can’t fall asleep at night! Yesterday I ran 13 miles in two hours, and guess what, I slept like a baby. If you have trouble sleeping, before you go get nyquil, or good forbid prescription meds to go to sleep, incorporate exercise. Those chemicals are mood changers and I’ve taken them and know for a fact they change the way you feel that night, but also for the day or two following, and we are too sensitive to be flirting with that kind of disaster. If you have bad knees and can’t run, join a gym and swim. The human body spent hundreds of thousands of years wallking, running and exercising on a daily basis and evolution hasn’t caught up to the fact that we no longer use our bodies for survival and therefore all of us generally have pent up energy at the end of our days. Add to that scientific fact, the fact that we made ourselves pass out to go to sleep for years on end, and OF COURSE YOU HAVE TROUBLE GOING TO SLEEP, we all did early on, and I’m here to tell you, simply add exercise daily to your life, and you will find you no longer have a problem sleeping. Even if you just start out by walking a mile or two a day, start some where, this is scientific fact… and if you’re around me, and don’t work out, don’t whine about not being able to sleep. It’s simple cause and effect. And it’s really simple, as Nike says: Just do it!

http://www.amenclinics.com/brain-science/spect-image-gallery/

– Jared Bryan Smith

A minor operation is one that is done on someone else – Dr. Richard Selzer (Hep C, Interferon, Pegasys Side Effects Reported to Roche Genentech)

Posted: January 25, 2011 in Uncategorized
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So in the interest of conspiracies and full disclosure, I did just formally complain to Roche Diagnostics, or a division of Roche called Genentech via an 1-800 number and case number *ahem 1462, because I was led to do this by an underground advocate of Hep C and Interferon treatments who are still suffering serious side effects from his Hep C treatment, Interferon and Pegasys, just as I am. So if I disappear mysteriously, let the bread crumbs start here! haha… He also forwarded me the side effects document that I posted on the left side of my blog here under Hep C Side Effects, and I’m grateful this guy is doing something, because 3 years out I am still suffering major headaches, daily and wake up every morning with a crushing pain in my skull, and I have to take 4 advil every single morning. At three years out I’m concerned that this is never going to go away, and in fact has been getting worse as of late.

The more concerning factor is that I’m now not alone, but have been hooked up with a group of at least 20 or so who are all experiencing these major side effects from Interferon treatment. It sucks, and mine, headaches, seem to be on the light side of the symptoms. There are people on this underground list with MS, fibromylgia, chronic joint and skin problems, and more. We’ve read doctors quotes talking about how it seems like anyone who uses Interferon is worse off than when they started. And yet I personally am obviously torn as to how to protest or be letigious, simply because I am cured of the disease of Hepatitis C, which now kills more people than HIV in the United States. So, I’m cured, but I suffer chronic pain. I wasn’t in dire need of Interferon treatment, I could have waited 20 years, but of course as Dr. Hutchinson told me, the young do better than the old, so I guess it does make sense to take the meds sooner rather than later. Especially in my case when you had the tougher version of the disease, which takes 12 months of Interferon and Ribavirin treatment, not just 6 months, and which of course is only cured 50% of the time, compared to some of the less aggressive strains of the virus which are closer to 70%. But had I known about these side effects and the advent of Telepravir which is supposedly right around the corner and lightens the load of the interferon and ribavirin one has to take, I may have waited.

I am very grateful to be free and clear of the virus of Hep C though, and what’s more, Roche actually paid for my entire one year prescription, which would have been 3k x 12, or 36k I sure as hell did not have. Still… my motivation is drained constantly. Fatigue is always with me, no matter how much I work out or don’t work out, and my memory, both short and long term are definitely affected. The irony is that the brain fog I have is so closely associated to a hangover I may as well have kept drinking. I often wonder if I did some cocaine or amphetamines like I used to (which is of course why I got Hep C in the first place) if it would reconnect all those neural synapses or whatever the hell. Who knows. I know a girl who went back out and used Adderall for a while, and she seemed sharp for a little while, but as fate would have it, she just last week got another DUI so there goes that one million and fifty fifth excuse to relapse, drink and take drugs… foiled again! haha….

Anyway, so yeah, I reported my side effects to Roche, though  I doubt anything will ever come of it, and to be honest, I am grateful the virus is gone. I mean I feel better than when I was on Interferon for sure, but what I wouldn’t give to feel sober, healthy and as lively as I was prior to the treatment. I mean it really was night and day, and I wish there had been an easier method of getting rid of the virus.

I wish someone would do an actual scientific study on Ozone, and Anthony Kiedis and Steven Tyler would both come clean about how and why they both choose to treat it differently.

I wish the tests would show that something was different with me, but all my tests come back saying I’m perfectly healthy, and yet hear I am, every single day, brain fog, tired, waking up with a headache and taking more than 8 advil a day. One day science will have something to definitely indicate the differences in patients pre and post interferon but apparently for now, the benefits, or being cured of Hep C, most certainly outweigh the consequences, or dying of hep c, and of course, not having any measurable side effects. Who can blame dr’s for thinking it doesn’t cause differences if here I am feeling like shit all the time, but completely incapable of proving it to anyone.

Oh the quote, haha, that refers to the Hep C, Liver Biopsy or sword inserted into your side, no fun at all, and though considered minor, very majorly painful. Read my book Hippopotamus Sea: My Viral Sobriety to hear my entire Hep C, Interferon, recovery journey through alcoholism, drug addiction, and of course Hepatitis C, and I give it away 100% free on http://www.books4free.com , it aint no scam, just a site that allows you to read my life story for free, and it’s also available for sale on Amazon and Smashwords for very cheap in hard back, and digital on smashwords.

-JB Smith