Posts Tagged ‘Post TX Side Effects’

So I made the move back to civilization from the mountain house, and I’m loving the new apartment and the new job. More than anything, all the fear wrapped up into not being able to perform at the new job is beginning to dissipate as the Post Interferon Syndrome headaches have been so diminished with the new meds. After Interferon I was so shocked to have that brain fog penetrate through and destroy my quality of life for many years after I stopped Interferon. I mean it sucks even worse because the doctors won’t admit it’s happening, blame it on other things, and tell you such idiotic things as, “Just take a multivitamin” or when you tell them about your symptoms kind of look down their nose at you and state “Well, if you say so.” I mean it’s quite remarkable really, how online you can find multiple people suffering from an almost universal diagnosis, and then go to three educated doctors in a metropolis like Atlanta, and have your General Doctor, your Gastroenterologist and your Neurologist, all basically say Interferon has no lasting side effects, so this must be an anomaly or just in your head, or even that you’re being a hypochondriac to the point you almost question it yourself. But I wrote about it, I journalled and I was even able to stop working for a while, move out of the city and see if it was allergies, pollution or something I hadn’t thought of, and the headaches persisted. I was still, 3.5 years later suffering from brain fog type headaches at least 66% of the time, which made selling, or making cold calls very tough if not impossible. So in 2012, facing a new job, a highly micro managed job, I was really scared I wouldn’t be able to perform because of the headaches. Two or three weeks into it, I was still suffering 2-3 days during the week, so almost out of hope, I decided to take a scientific practical objective look at what meds might possibly do for me. This is despite my being a member of Alcoholics Anonymous and opposed to being on any mood altering substances. I had tried anti depressant while I was beginning Interferon and I had been so early in sobriety, I felt like it made me more squirrely and even so uncomfortable that it made me think of drinking more often, and trust me at one year sobriety, I wasn’t in a position to be flirting with that possibility. Especially as I was just starting my battle against Hep C, the disease which attacks the very organ my liver uses to process alcohol. So my attempt at mood altering substances, or anti depressants had gone so bad I just was afraid they would make me want to drink again, but at 5 years sober, the headaches practically making me an invalid, I finally decided, hell or high water, I would give several different substances, 90 days or so, give them a fair shake and see how much better or worse I felt, just so longed as I didn’t drink or drug, it was worth the experiment. I’m glad I did.

It’s mind boggling how well Celexa works in combating my constant headaches. I mean it just doesn’t make sense it’s so effective. The first week or two was weird as I was adjusting but after I got over the hump, I mean to tell you the brain fog headaches I would rate as an 8 or so, fell down to around a 2, and the frequency of around 66% of the time or 2/3rds of the time walking around trying to function in pain has been reduced to around 1/10th of the time. They also gave me Prodrin to combat the migraines, the other kind of headache that actually significantly went away when I quit smoking 2 years ago, and it’s basically caffeine and a ton of Tylenol, but that too does the trick on that particular kind of headache. I am just so grateful I held out and waited, and found something that finally worked. I will give this another 90 days or so, or maybe even after that explore other ones to see which one I function the most highly on, but this is like a minor miracle to me, because I was suffering for so long, in so much frustration and pain, and I thought it would never end. I still don’t understand it. Could it be I was so depressed, or so chemically imbalanced it actually caused physical pain to my brain. I mean that looks like the case but seems far fetched and unlikely, however, I am not a chemist, a doctor or even educated about such things. All I know is it killed my headaches, made my life functional again and I am grateful.

I was written too by someone recently stated they had to go back on oxys because of their post interferon pain, and let me tell you man, I can relate. I was an opiate addict for a long time, and I write about that part of my life significantly in my book Hippopotamus Sea, however, I am not going back to that shit, ever again. Not saying I haven’t been tempted over the last 3.5 years though, I thought about it at least once a week for sure. It just isn’t an option for me anymore, I’d sooner eat a bullet. Just like any drug, I need more and more, for less and less effect, and it’s what caused all this bullshit to begin with. I’m not ever going back to that, and if you’re suffering I beg of you to quit the opiates and try Celexa, for some reason it really helped me with my post interferon symptoms. Opiates and drinking, relapse in general is not a viable option, period the end. Other than catastrophic surgery and taking the meds with sponsor supervision, we with the disease of addiction can not flirt with pain meds or drugs effectively, and even with the Celexa, I was in constant contact with my sponsor and letting him know exactly what I was trying, and he was aware of every decision I was making. Accountability is key in sobriety, and no matter the pain, there is no excuse to going back to opiates, drinking or any kind of narcotic. With us to use or drink is to die.

That being said, I do still feel a bit anxious from time to time on Celexa which makes me want to try Lexapro because I hear that it has an anti anxiety portion, and now my mind is much more open about the capabilities of these meds, whereas before I thought it was a block to your higher power, and the sunlight of the spirit, now I’m glad my headaches are gone regardless. Actually the Doctor had suggested Lexapro, but they didn’t have it in generic, and therefore the insurance company changed my prescription, or rather made me call and get the Doctor to change the prescription, which in itself is news worthy. Who the fuck gives the insurance company of none doctors the ability and power to change my medications, solely based on cost. I mean, it’s really an outrage. They say Lexapro will have a generic within the year though, so I’ll just continue on Celexa, record the symptoms, and then compare once I switch over later on.

I am still glad I found a baseline before using them, but I mean, Post Interferon, meetings and step work just wasn’t killing the headaches like it killed the urge to drink early on for me. Everything happens for a reason I suppose.

– Jared Bryan Smith

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