Whew

I guess I am glad my treatment is over and that my rashes did not get to a systemic stage...My therapy has killed several people recently: Fatal Rash from Hep C drug Incivek.

3 months

My 3 month blood results are in. All is good! Liver enzymes have settled into a lower part of the reference range (in fact, alkaline phosphotase is a couple of points below that, perhaps indicating that I need more zinc in my diet). Everything else is normal, with the exception of platelets, which are still low, but have climbed 15 points or so in the last month and a half. Hurray! One more test left, in January, to check for the presence of the virus.

Of course, I still get tension and aches in the general liver region, but I suspect I am going to have to learn to live with that...and my libido is still largely broken. Otherwise, energy levels are climbing, cognitive function is increasing, irritability levels at idiots are dropping!

An update

So, while they were performing the little surgery on me last Friday, I had my blood-work done. Finally--something new to report!

Essentially, I am recovering quite well: my H+H are still a little bit low, but not bad. My platelets are low, but above pre-treatment levels already. The best news are my liver enzymes. Initially, they were high, but not horribly so. Once the treatment had started, they went down to almost normal--reflecting the fact that the virus causing them to elevate was rapidly going extinct in my body. Later, they climbed up a bit, due to side-effects of my medications. Now they have dropped again: my AST is perfectly normal, my ALT is about 8 points above reference: not bad at all, and indicating that my liver function is approaching normal. All good and promising. The next test is in November.

In other news, I have been officially cleared to drink some alcohol. No fifths of whiskey, of course, but reasonable amounts (defined as 2-3 drinks a day) are perfectly fine. Basically, I am human again.

Liftoff!

OK kids: sorry about the long silence, but nothing drastic, life-threatening or otherwise out-of-the-ordinary has happened over the last month. There was a minor alarm when my complaint about intermittent abdominal pains (more like liver aches, ribavirin-correlated) coincided with slightly increased lipase levels and my doctor thought that I could have interferon-induced pancreatitis (it happens, but rarely). Anyway, that was not my case, but now I know that my lipase seems to run about 4 points above reference point. That's all.

Anyway: Last Saturday I took my last shot of interferon--painful as always. Last night I ate my last little blue ribavirin pill--nasty as always. I AM DONE WITH THE TREATMENT! (And not a day too soon!) BUST OPEN THE BOTTLES OF BOOZE! :)

So here is the current state of play. On the POSITIVE side of the balance sheet: I guess that the viral levels are still undetectable (almost 100% certainty of that) but I will not know for sure if I have been cured until 6 months from now. The virus may still be lurking below detectability threshold, but it is quite unlikely considering that I was an early responder: if the little bastard had mutated from under the treatment, we probably would have seen the resurgence by 12 weeks. So considering my history, I would say that my chances of being cured are somewhere over 95% or so.

On the NEGATIVE and NASTY side of the balance sheet:

A lot, actually, but supposedly it all shall pass.

1.I am weak as a kitten. The last two weeks were actually quite nasty: I was falling asleep all over and generally had problems moving and thinking. I am ridiculously glad that I did not have to do the whole 48 week shebang: I can see why people take medical leaves of absence from work at this point and spend the next 24 weeks in bed. Not for me, luckily!!!

2.My blood is still all sorts of fucked up, with strong anemia (hemoglobin at 10.1 last two times I did labwork) and suppressed red and white blood cells, leading to fatigue, difficulty concentrating and oodles of little skin infections. Last batch of tests were done on Friday and I will not know the results for a couple of days but I can assume that they are essentially the same and will remain that way for another few weeks.

3.I lost about two thirds of my hair, and still come up with a big clump two-three times a day. Shedding like a dog in the summer, essentially, This is interferon-related and now that I am off it it'll grow back soon. But considering that I'd started with two years' worth of a chevelure, what is left right now is pitiful and sad.

4.Over the last couple of weeks I'd started developing a second rash. This one is likely ribavirin-related; it is in the same places as the first one, but more diffuse and itches less. Now that I am done it should improve rapidly.

So in short, I still feel quite crappy and this will last for a little while, at least. BUT IT IS OVER. There is no way to go but up!

Today me and my honey will go out to have a good fancy exotic meal...with beer!!! And I have several ciders stashed away as well as a bottle of Viking Blod mead and will partake a bit of each tonight. I will report on improvements in my attitude as they happen. Especially my cognitive function: I have stacks of literature on climate physics, macroeconomics and mathematical ecology that I simply could NOT process for some time now due to cognitive side-effects. Hopefully, the old brain will kick back into gear soon! I am also planning on learning Yiddish so I can complain about, well, everything, in a language properly designed for that. Also, I should be able to start exercising to get rid of the fat accumulated over the last 6 months and to regain lost muscle mass. And no more high-fat diet!!! Cheers!

An interferon-less future?

Interferon-free treatments

Although one sentence here is a bit misleading: "Interferon is a fierce drug". It may be, but I find it to be almost tame compared to incivek, although your mileage may vary, and it depends on what kinds of side-effects you find more nasty.

But yes, I am a bit pissed off about possibly having just missed an easier treatment. Incivek may be worse, but only a fool would forego a chance to give one of these motherfuckers up if they could.

On the 19th week of treatment, my dear meds gave to me...

...a whole lot more of the same: mild nausea, abdominal aches (liver region), skin problems of all sorts, etc. A new development, however, is a pain in the ass (if my head is an ass): ALOPECIA.

I had started losing a bit of hair halfway through treatment but the process has accelerated now. I lose a handful each time I take a shower, and the top of my head has some rather silly-looking bald streaks by now. Apparently, this is due to interferon, which affects hair follicles. Also, it is supposed to grow back when the treatment is over (unlike hair loss due to cancer chemotherapy, which is largely irreversible), so unless I shave what I have left off completely, a couple of months after the treatment I should have a natural feathered do, multilayered!

I am almost at the point where I can write objectively about incivek--being able to separate its side-effects, now gone, from those of the other two meds. Soon! But, in a bit of good news, my hemoglobin is up to the point where my blood can actually leave stains. A month ago or so, my bloodstains washed out without a trace in laundry; not any more. (That was the time when my rashes bled a lot...and before then, when my nosebleeds were haunting me as well).

Of course, currently I am not doing much of anything but taking my shots and eating my ribavirin twice a day, and keeping my fingers crossed that viral levels will still be undetectable on Aug 10th. Chances are good; general success rate for the therapy is something like 78%, but that includes non-responders, and those who have missed their meds repeatedly, etc. I would like to see statistics that show success rate for those like me who were diligent about their meds and whose viral loads were undetectable at both 4 and 12 weeks--that is, a Bayesian estimate, adjusted for known conditions. Of course, I cannot find any information of this sort.

And, an article I'd found, dating from Apr 25th, said that Vertex were at the time in the middle of Phase 2B testing for incivek and Hepatitis C-1 (which is what I have). No wonder I didn;t have to pay for it: I was, after all, a guinea pig, although not one of the brave Phase 1 testers.

4 weeks post-Incivek

..and one week post-transfusion, my blood was patchy. A lot of the changes can be partially attributed to the transfusion, of course. Bad: white blood cells down, at their lowest since April; liver enzymes are up--both by about 15 points. Neutrophils are down. Most of that is probably a reaction to my vampirism, so will pass. Better news: H+H and RBCs both up--partially, but not entirely due to transfusion. They seem to be improving, and even though now that the transfusion had worn off I am feeling a bit crappy, it is not as bad as it was two weeks ago. Looks like I am out of the dangerous zone at least.

The most positive and surprising in a good way result is my platelet levels: they are up to 98, up 30 points in 4 weeks, And they have nothing to do with any new blood: I only got RBCs. So that is good and an indication that as Incivek is leaving my body, my bone marrow function is returning closer to normal.

And I feel better in general: I can do 3 or 4 Tigger-style bounces before becoming exhausted, when two weeks ago I could not do any!

Of course, the effects of other meds are still nasty. For two-three hours after eating my ribavirin I still feel like being thrust head first into a shit-hole while being belaboured about the ribs by sticks in slo-mo. Although, whereas in the past it was baseball bats, now they are rubber-encased metal clubs: hurts a bit less and leaves less memories, at least. And interferon is increasing in nastiness each week. Only 7 of those left, however! Getting there!

I don't know about that awesome-looking rum, but several ciders will be in order when I am done, Again, I will still be under observation for 6 more months, so will not be able to debauch until then at least...but I suggest that at the end of it, everyone should meet me in London for a nice pub-crawl.

No news is good news

Today, I ran to catch a bus and did not black out! Not even close!

A week after transfusion, I am slightly weak, a bit out of breath on occasion and a little pale, but oodles better than I was at the same time last week. What's more, with the new baseline of decay, side-effects of meds are not as nasty either. Like I said, no news is good news. Had more bloodwork done today (and, incidentally, my platelets must be up: my bruising now is minimal) and will know the results in a few days. I suppose that the results are not going to be exactly indicative of the true state of affairs, due to the continuing effects of the transfusion. Initially, it probably bumped my hemoglobin by about 4 points. So at most, I'll have to subtract those 4 points to arrive at the true levels, and actually it'll be less than that since it has been a week since the transfusion and my hemoglobin has probably dropped a bit since then. Anyway, that's all for now. It is weird, feeling at least closer to normal: I'd forgotten what it felt like!

Vampirism is good for you

I am back, having ingested a pint of AB+ and another one of AB- blood. I am not sure whether is was riboflavin-flavoured, but it certainly was NOT carbonated. Minor rash around the injection side that is subsiding as I type this. No other detrimental effects. On the other hand, I am now rosy-cheeked (literally!), bushy-tailed, bright-eyed and with a freshly stiffened frontal member. I can move faster than a snail without panting for air, and my lungs are no longer burning after 10 steps. Also, actually thinking and reading does not automatically make me drowsy. All in all, a good bargain, I suppose. But it took a goddamn long time, will probably cost me the rest of my yearly deductible and will last for 10 days at most. I hope that my hemoglobin rebounds at least a little bit by then: I don't really want to be spending most of every other Saturday at the outpatient transfusion center (which is now located in the cancer center) for the next two months. On the other hand, the nurses confirmed what I already suspected: I am fucking tough. They say that many other people have side-effects worse than mine (including anemia) and that most people with my hemoglobin levels would be whining and demanding a wheelchair rather than hoofing 2 miles to work and back daily. So yes, though I walk through the valley of death, I have no fear because I am the toughest meanest motherfucker in the whole damned valley! Hurrah! :D

Vampirism in reverse and other blood matters

The latest bloodwork results are in; apparently there is no depth of depravity to which my hemoglobin would not be prepared to sink. It is at 7.5 (or was, last Friday) which is well into the region of "severe anemia" and I have an appointment with reverse vampires now. On Sat Jun 9th at 0900 they will pump two units of someone else's red blood cells into my veins. If I do not report afterwards, consider the possibility that I may have exploded like a tick or a mosquito who'd sucked too much blood. But probably not.

In better news, my white blood cells, at least, have begun to climb back up. My doctor thinks that it is a sign that my bone marrow, ravaged by the triple therapy attack and now only forced to defend itself against double therapy attack, is beginning to recover somewhat. The effects of the transfusion will last for up to 10 days, during which time RBCs/hemoglobin will also have a chance to recover to less worrisome levels, Or so the thinking goes.

Finally, in completely bizarre news, my left arm had shrunk! The rash on it was much more severe than that on the right one, and it appears as if incivek had just eaten the muscle mass from under the rash! It still itches as well. Anyway, I'd lost about an inch from my bicep and my tricep is barely detectable. The arm feels like a ramshackle construction of skin, bone, dried-out cartilage, and bumpy rash scars. Whatever muscles are discernible are weak and flabby, and somehow hollow. This means that as soon as I get some oxygen in my bloodstream it'll be weight-lifting (and bicycling, but that's a different story!) time. Hurrah! Damn the anti-matter relativistic torpedoes! Onward, raving lunatics!

I really really REALLY REALLY want an Isestegi cider.

New Horizons of Pain

Haha, now that the deadening pall of incivek has been lifted from my body I can more properly appreciate the special effects produced by the other members of the team. I was already familiar with the icky burning sensation and mild nausea that was the hallmark of brother ribavirin, but uncle interferon had largely ignored me for the first 14 weeks. The few mild production touches had hardly prepared me for last night's full-on wall-of-pain treatment. Mssrs Inter-Phil-Ron Spector woke me up at 3:30AM, about 5 hours after taking my injection, with shuddersome muscle aches, horrifying thirst, some headache and the general feeling of having fallen off a bridge at some point previously. His show lasted for a couple of hours, and still there are traces of ache now. The permanent "flu-like" symptom appears to have settled upon me. Motherfucker! Still, nine more shots only. And, according to the doctors, side-effects are in many ways an indication of the efficacy of the medicine: the worse it hurts now, the better the chances of complete success eventually. Very Calvinist of them, but I suppose I'll take their word for it, provisionally.

Interesting rash detail

Although the incivek rash is almost gone after two weeks, little traces of it (occasionally itchy) still persist in the spots on my body where it first appeared. Apparently, almost everyone gets it there. Mine are oval spots, about 3x1 inches, along the upper side of the elbow: apparently where the extensor tendon is. It is so weird that that particular spot is specifically affected and that it happens with everyone. Fascinating: what is the physiology of it? Why that particular spot and that particular tendon (assuming it is the tendon) out of so many other possibilities? Fucking mystery of the human body; the etiology of the rash is, as I have said, unknown. Makes me want to study, erm, relevant subjects. :) And potentially figure out which part of the incivek biochemistry causes it...

Also, once more, belabouring the point somewhat: I am so fucking glad to be done with incivek. It did its bloody job beautifully, and I would, at this point, certainly recommend it to anyone, but egads! it is an awful poison, and the last two weeks were the absolute worst. I am the shit, however: didn't even miss a day of work! Hah!

More on incivek

Another good thing about incivek (besides the undeniable fact that it works awesomely at clobbering the virus) is that in comparison, ribavirin/interferon treatment is only a mild annoyance. Nausea? "Flu-like" symptoms? Random aches and pains? Vague sensation of having been poisoned that persists for several hours after taking the meds? Bah, humbug: it's all nothing.

Energy levels continue to increase. Walking is easier (but not easy yet!) On the other hand, more insomnia, intermittent and random headaches, and occasional drowsiness are still with me. AND I am getting more and more irritable and short-tempered by the minute. I am sure there will be more in the next 10 weeks. I am only glad that--so far--I do not have to go through the full-length treatment which would add another 24 weeks of riba/interferon on top.

Shriniking side-effects

More incivek byproducts bite the dust: over the last 2 weeks of taking it, I'd developed and intermittent sore throat and, even more uncomfortably, a sore roof of the mouth. 10 days after finishing it, these are gone. Excellent! My general energy levels are up as well; it's a pity that my hemoglobin is so low that 5 seconds of activity leaves me exhausted and out of breath. The general achiness in muscles, probably due to interferon, is becoming more prominent. Also, in general, muscle fatigue is ever-present: walking my 1 mile or so from the MAX to work and back makes my legs sore, my chest tight and even an occasional spinny sensation. I am pretending that walking that mile very slowly is my equivalent of cardio exercise and is actually good for me. In fact, it probably is, and I sometimes even get a bit of a second wind towards the end of that walk...:) Yes, I feel decrepit!

My GE recommended against having any surgery, no matter how minor, while on treatment. So I rescheduled my granuloma removal for September. It seems rather insignificant now, since it has healed and barely bleeds nowadays. Ah well!

12 weeks

Bloodwork back! First, some not-entirely-awesome news: my hemoglobin is down to 8.7, making it rather difficult to walk...and necessitating an extra unscheduled blood test next Friday. If it drops below 8, my ribavirin dosage may be cut--or I may even be up for a transfusion. I hope not.

On the other hand, the rest of my blood appears to be stabilizing; WBC/RBC are hovering around same values, and my platelets are actually climbing: they are at 67 now, up 10 points from 4 weeks ago (still ridiculously damn low, though). My bilirubin and ALP are on the low end, actually, and ALT/AST are slightly elevated--which can be accounted for by a variety of reasons, from my fibrosis to the fact that I am getting fatter, while losing muscle mass. So my total weight remains pretty constant, with muscle being replaced by belly fat. Urrrgh!!! Of course, due to my low hemoglobin/hematocrits I cannot exercise--as I have said, I have problems walking for more than 5 minutes at a time, and yesterday it took me about 10 minutes to recover from pacing briskly to catch a train--not even running! :(

Anyway, of course, the most important news: viral counts are still undetectable! That makes for total suppression at 4 and 12 weeks, and is reason enough to celebrate--for everyone but me. :( I found out that one shot of booze is sufficient to neutralize interferon's activity for up to 4 days, giving the damn virus a chance to replicate and escape from under the treatment, especially since I am done with incivek now and there are no barriers to replication and mutation for the viruses that are left in my blood--the most resistant ones, of course.

Ribavirin notes: awful thirst and itching, especially in scarred areas and fresh cuts, about 4-5 hours after eating the pill. Lasts for 1-1.5 hours on average. Gah! At least the rashes continue to shrink, leaving scar tissue behind.

Decline and uplift

It has been 4 hours since I would have normally done my incivek, and there are noticeable changes. For one, I am not as tired and drowsy (although not yet back to being a weeble, at least I do not run out of breath getting out of bed and walking to the kitchen). Yes, the general weakness seems to have subsided somewhat. Next, I itch less, and the swelling and the rash are reduced noticeably. Amazing! Science fiction!

On the other hand, ribavirin still makes me a bit achy and nauseous, and the itching is not gone entirely. Overall improvement, however...Also, now I can move my ribavirin to every 12 hours, spreading the nastiness somewhat.

A step in the right direction

No more incivek! As of this morning, I no longer have to eat $250 worth of pills every 3 hours but only an $25 pill twice a day (+an $200 shot once a week)! (Sorry, the surreal nature of the prices involved is still addling me...) Anyway, I get to find out exactly which side effects belong to ribavirin alone! Of course, I fully expect the rash to be gone within 15 minutes....why is it still here??? :) (At least I remembered to have some pictures of it taken yesterday--at what I suppose would be its greatest extent). Also, from all reports, I gather that my general energy level will go up a bit now. Yay! We shall see; so far I am still in bed.

PS, Paul McCartney's "Ram" is of course the greatest album that silly motherfucker has ever recorded, and the new, remastered and expanded, version is even more silly and wonderful. And sounds awesome.

News, costs, and experiments

One drug less on my prescription! I picked up my latest batch of meds today--and no incivek! Yay! However, my out-of-pocket expenses are still exactly the same as they were. That means that I did not pay a dime for my 3 months of incivek--and that is about $48000 of meds! Whatever my insurance did not cover was taken care of by the manufacturer. Of course that confirms my suspicion that despite having been approved by FDA almost exactly a year ago, this treatment is still pretty damn experimental. If tentacles start growing out of my ears I'll let you know.

Went to the cheery lab vampires to squeeze out several tubes of blood. Blood cell counts, etc; viral loads (if detectable), thyroid function. The results should be in by Wednesday--I am waiting with bated breath and on the verge of blacking out. If they are good, perhaps I will allow myself that half-a-beer I've been craving lately. Yeah: the other day Erin was having a beer and I took a sip of it. (Mind you: it was a very tasty beer, yet I am reasonably sure the same thing would have happened with Coors Light). Anyway it tasted SO GOOD I nearly fucking cried! I still have 12 to 36 weeks ahead of me until I can actually have a couple of my own! AIYEEEE!!! Everyone will be invited to that one; I'll let you know the details as they develop.

And, finally, the rashes are nasty. Lots of them bled last night. Once more, they are supposed to start getting better after this weekend. Huh! They'd better!!!

Psychosomasis

You know, I have gotten to the point where even touching the pills--when I pop them out of their childproof packaging and stick them into my pillbox--is enough to make me shudder in revulsion and have a bout of nausea. Goddamn it! Conditioned reflex!!!

Otherwise, I know why they prescribe incivek for 12 weeks only: any longer than that and it would kill more patients than it cures. I am surprised I can still make it to work. The only time I feel moderately OK is when I am laying down. And then I get itchy. Three more days of it. My elbow rashes are a mass of open bleeding sores. Not infected: more like a clutch of nasty mosquito bites. They are supposed to go away as soon as I am done with incivek, though. I hope.

occupations

Some people may find enjoyment in sitting and watching paint dry; I watch my incivek rash turn red. No, seriously: when I wake up (around 7AM, it is pale pink, soft to the touch, almost invisible except under a certain angle of light. Then i swallow two vile purplish-pink pills at 9AM. Within half an hour, the rash slowly becomes redder, begins to itch, and changes to a dry, eczemous feel, and raises significantly. Fucking horror film. (My sheets are covered with small blood-spots from bleeding rashes: I surely hope that my viral loads are still negative. don't want to be a biohazard any more!!!)

The etiology of rash is heretofore unknown.

Minor rant

1.Incivek is a protease inhibitor: it suppresses viral replication. Under regular conditions, the little buggers make about 1 TRILLION copies of themselves each day; for each one there is a possibility that it will mutate and evolve from under the treatment: one example. So suppressing replication rates prevents that from happening.

2.Ribavirin attacks viruses directly (in fact, it is often the only hope for people who contract such nice diseases as ebola and Marburg hemorrhagic fever). Yes, it makes you feel like crap in the process: it IS a bloody poison, after all.

3.Interferon boosts viral-fighting properties of your immune system, allowing your body to stomp the virus after it's been kicked in the balls by (1) and knocked down to the curb by (2).

Got it?

So it pisses me off when I see blogs and reports by the people who claim that the treatment is "this long" only to give pharmaceutical companies a chance to make more money (no, it is long because an attempt is made to eradicate ALL viruses in your bloodstream, and ending it early is functionally equivalent to ending your course of antibiotics early: you are essentially breeding new, resistant bugs). Or when people claim that the treatment is not doing anything to heal their liver and that they do not need it: it is NOT SUPPOSED to! The purpose of the treatment is to wipe out the virus, which is the main agent damaging your liver (often aided and abetted by alcohol). Or people who make startling claims that they know what's good for their body better than any doctor. When they learn a bit about virology and biology (most of them seem to be completely clueless on those) and when they figure out how to observe a virus with the naked eye, they can talk to me. Until then, they should stop whining.

Phew. One of the side-effects is irritability. Obviously. :)

A tip

Sorry; it looks like interferon has begun to fuck with me for real and I can barely muster the energy to get out of bed most of the week. The good news are that I only have 6 more days of incivek left--one less poison after this Saturday! Hurray! My 12 week blood results will be done then; I hope the virus is still below detectability thresholds. The not-so-good news are that the rashes are continuing to spread. My elbows are the worst, slabs of red eczematic masses that are especially scary in computer monitor lighting. Otherwise, patches on my back are slowly moving down onto my legs. Supposedly they should be gone within 3 weeks of stopping incivek. The good/bad news--depending on your POV--is that apparently many people get it much worse than me. Pretty much everyone I've talked to that had had this (or earlier) treatment was sicker than me so far. I still have 12 more weeks to go, of course, but I keep on hearing horror stories about rashes over 80% of the body 5-6 weeks after beginning treatment, or people having to stop working because they were unable to get out of bed at all--and I keep thinking that either I am extremely tough or extremely lucky....:) Perhaps both!

A food tip: if you are going to go on this treatment, whole fat yoghurt IS YOUR FRIEND. Not only does it provide necessary fat with your meals, it also appears to be of great help managing side-effects--from nausea to diarrhoea. Live cultures FTW!!! Eat it at least once a day; yes, you WILL get sick and tired of it in a few weeks, but taking a break from it, even for a couple of days, leads to all sorts of extra nastiness.

OK, I'll tell you more about interferon later. For now, all you need to know is that it DOES follow a week-long cycle, and that the effects, despite what I was told in training, peak out about 36-48 hours after administration (not 7!!!) Anyway, over and out for now. Must go get my passport.

Some very interesting details

..including interviews and press releases: Hepatitis C drugs side effects

Rashy rashes no 1

Left arm rash at 10 weeks. That was one week ago; it's gotten worse since then and I will take some pics tonight.

Interefering rashes

Sundays after my interferon shot are getting to be quite a drag. After shot #11 I am barely able to get out of bed and move around. going out for a bit tonight, because this may be the last Sunday for 13 more weeks that I am physically capable of doing so. It's like battling some nasty exhausting flu: weak, achy, etc. And this persists into Monday and starts wearing off by Tuesday, and by Friday I feel almost human again (other meds considered), in time for the next shot. Ugh!

Meanwhile, the rashes are growing, even though it seems I am rather lucky, overall. I have two really nasty patches: around my elbows (and, frighteningly, scratching them is almost orgasmic in its intensity), and several small ones on my back. Other people started having them 3-4 days into treatment, and by the point I am at, some had them over 60-70% of the body, including their face. So overall, I shouldn't complain.

My platelets stabilized around 55-60, which is pretty damn bad but at least not dropping anymore.

14 more days of incivek: things should get a little better after that!

Too tired to type...:)...will post some pictures of rashes later!

9 weeks and counting anxiously

With 22 days of incivek left (riba/interferon will continue for 12 more weeks), here is a breakdown of my average 24-hour period. Conclusions first: it is the general distraction and inability to think and concentrate that bug me perhaps the most. I have never been able to use a basic astronomy text as a sleep-aid; today I can barely comprehend a paragraph after reading it three times. Pulpy fantasy is about the only thing I can read, and even that gets a bit blurry. THESE EFFECTS HAD BETTER STOP QUICKLY ONCE THE TREATMENT IS OVER!!!

Anyway, this is how a day goes:


0900 750 mg incivek
0900-1230 or so; flushed skin, mildly dyspeptic, burning thirst, general fatigue
1230-1330 symptoms subside; feeling almost normal
1330 drowsiness sets in
1600 or so drowsiness dissipates; almost normal again, just in time for...

1700 750 mg incivek + 600 mg ribavirin. 1st riba of the day!!!!
1715 side effects begin
1715-2030 or so: like being beaten about the head and the torso with a baseball bat, in slow motion. The pain is tolerable only because it is stretched ove ra period of 3.5 hours. Nausea as well, but mild. (At its worst early in the week, after interferon shot, and gets better throughout, to become almost tolerable by Friday...in time for the next shot).

2030-2200 almost normal
2200-0030 a bit manic--and drowsy at the same time. Cognitive impairment, massive itching.

0100 750 mg incivek + 600 mg ribavirin

0115 hopefully, get to sleep by then because the beatings begin again althought they are not quite as nasty the second time around.

0600 wake up, feeling almost human and aware, but soon after that a paradoxical 'drowsy insomnia" settles in. Brain too sluggish to get anything complex done, but unable to sleep most of the time. And so it comes to...

0900 and the cycle begins anew.

Note: Saturday night, adding insult to injury, I get 180 mcg of interferon stuck into my belly. So far, with a couple of exceptions, direct side-effects of this one have been minor compared to the other two, but a week-long cycle aggravating the others' effects is emerging--see above.

I am not complaining; in fact I am endlessly fascinated by the interactions of the cycles of the three poisons that I am consuming, and their effects. The rashes on my elbows (primarily) hold infinite wonder. It is a challenge to my powers of reasoning to separate the "incivek pain" component from a "ribavirin" one; and to distinguish between three different kinds of nausea. von Masoch would be proud of me!

Books of Blood, 8 weeks edition

Eight weeks into the incivek treatment and my anemia is kicking in! WBC/RBC/hemoglobin/hematocrit counts are dropping, although not horrendously low. Liver enzymes are hovering at normal (AST) and slightly above normal (ALT--actually went up 3 points, but that is likely a statistical fluke). The troubling parts are other signs of anemia: slight aniso- and poikilocytosis; and, potentially scary, slight toxic granulation and the presence of vacuolated neutrophils--which could indicate massive bacterial blood infection but most likely are yet another side effect of the damn drug. Yes, my immune system is compromised right now--funny,, considering that some of the meds I am taking are actually immune system boosters--but only in a very narrow way. In any case, since my doctor is not pulling me in to stick me onto an antibiotic regime, I suspect this is all within acceptable limits. Or perhaps they will pull me in today! :)

More on rashes: interestingly, they are apparently fundamentally allergic, and are triggered by overproduction of eosophils. It is funny that my drug cocktail suppresses the production of some blood cells while increasing that of others(and the chances of abnormal ones!). Still, only 3.5 weeks to go on incivek--after that things should get better. If my anemia keeps on getting worse, perhaps they will reduce my ribavirin dosage.

Speaking of ribavirin, reading a batch of monographs I find out that nobody really knows how it works! There are several postulated mechanisms, but none confirmed. The fact that is DOES work is not in doubt--for some diseases, like those nasty hemorrhagic fevers, it often gives the patient the only chance for survival--but it does so in mysterious ways. (As opposed to incivek, the action of which is quite precise--and the side effects, much more diffuse and general).

Latest developments: weekly report

The 9th interferon shot seems to have gone without a hitch and no unpleasant side effects. Could I have accidentally hit a muscle last week? Weird. Also, I seem to feel better in general--as long as I get plenty of rest. Did bloodwork on Friday to test for platelets/blood cell counts and since I did not receive a panicked call from any of my doctors, I assume that their levels are not in the immediately deadly range, and that they have stabilized--or perhaps even gotten better. Which is good, considering that I will be making the appointment for my minor nasal surgery on Monday--I really do NOT want to get a platelet transfusion on top of everything else.

And everything else includes at least one minor but uncomfortable development: my immune system is becoming more compromised and almost every cut, minor abrasion or pimple on my body becomes rapidly infected and difficult to take care of (with low platelets, it takes them forever and a day to heal, thereby increasing the chance of infection even further). Have to be more careful. I get paper cuts every day and used to not pay any attention to them--but now they are as likely as not to stay open for a week and turn all red and nasty. Lots of hydrogen peroxide and mupirocin ointment on everything!

The rashes are not getting much worse. In the two weeks since they first appeared, I have developed quite a few little patches that seem to come and go, with several major ones. The two biggest ones are, weirdly, on my elbows. These are not going away--at least not until the incivek treatment is over, in four more weeks. Smaller ones on my shoulders and lower back, but those are just small collections of skin-coloured bumps as opposed to the elbows, which are red and blistery.

Finally, I have not said it before, but I am developing a total hatred of most "alternative" medicine pushers--for this particular disease, specifically. It is mildly despicable to attempt to cash in on people's suffering by offering them "complementary" treatments and playing on their fears and ignorance--and those treatments are often quite expensive. It is thoroughly an asshole thing to imply, as many sites I have seen do, that the virus does not have anything to do with the disease itself (similar to HIV denial) and that mainstream medical approach does not work at all, exhorting people to reject it and instead use some ill-defined Chinese or some such treatment as not even a SUPPLEMENT but a SUBSTITUTE. I would lock those fuckers up and literally throw away the key. They claim that the pharmaceutical establishment is only making money off us poor peons; leaving the dubious scientific reasoning of their claims aside, I must note that their "treatments" are quite expensive (herbal supplements are not cheap, even!) and, for comparison's sake, my incivek (about $4000 dollars a month in real cost) does not cost me ANYTHING. As in $0: my insurance and financial aid from the drug company are covering ALL of it. (In some later post I really SHOULD rant at the scumbag charlatans who are pushing alterna-garbage on people--and I will!)

Oh, and a general note on insurance. If I may be so bold as to complain...:) In a real society, where my insurance was not tied to my job, I would certainly consider taking a medical leave of absence: the side-effects are gnarly enough to qualify me for being "sick" for the next 4 months, anyway (and I hope they don't get any worse). Of course, I cannot do that because I would lose my insurance--and be unable to pay for my treatments then, even with 70% discount that I have secured in case of such a happening. 30% of $6000 a month is still $1800--hard to do when one is not working...

Nose news

Went to see an ENT doctor today for my nosebleeds. He thinks that I have what appears to be a pyogenic granuloma (and a wiki article with more detail) in there, that has to be removed both to solve my bleeding problems and to make sure it is not something more serious. It may have been there for a while, and got aggravated by my falling platelet counts--and my meds. In any case, it is more settled down now and does not bleed as much as it did last month. They are waiting for my Friday bloodwork, to see what my platelets are before scheduling me into surgery. The doc wants them to be at least 100; 3 weeks ago they were 55...:) so I think it is a pipe-dream. I may have to get a platelet transfusion at the same time to promote post-surgery healing. So not entirely awesome news. On the other hand, considering that it may have been there for a while, a potential point of entry of Hep C virus into my body has been uncovered.

Ribavirin aches

Egag! I moved my ribavirin times to 0100 and 0900 to try to capitalize on the drowsiness it causes. And it would have worked, except...

The latest kick from ribavirin is nausea that starts about one-two hours after I take it and lasts for a couple of hours at least. It seems to get stronger with each application. I suppose I could sleep through that, and through the horrid parched mouth raging thirst that it causes, but it also magnifies every pain and ache in my body an hundredfold. There is a swarm of angry bees in my hands, where the papercuts are (and, adding insult to injury, the damn cuts take forever to heal, due to my low platelets). My right shoulder, where there is a little asymmetry as I type at the computer keyboard at work is a giant knot of pain and misery. In my nose, the bleeding spot is a burrowing toothed worm. Gah! Am I doomed to no sleep for 16 more weeks? I can see why many patients develop depression at this stage of the treatment.

This Friday, more bloodwork. We'll see if I have any platelets left...

Interferon catches up!

Up until today, my interferon side-effects were minimal, as it turns out. Tonight, with my 8th shot, I think that I finally realize what people are talking about. Just did it 10 minites ago; right now, I am lying down, achy and miserable. The weird vague abdominal hollow ache associated with flu, mild but horribly annoying background muscular pangs, general weakness and, for lack of a better word, discombobulation--it's all there, although the slight disorientation that attends the first few minutes after the shot has gone away--and the general feebleness seems to be dissipating. But WHOOO! rhis was a sort of a rush I'd never had before--and hope that it goes away quickly. I only have to experience it at least 16 more times...

A miscellany of decrepitude

Here are some interesting observations: each day, I walk from the MAX station to my work and back, about 2 km each way. Before I started the treatment, it took me a little less than 20 minutes and I arrived fresh and comfortable. Now it takes me more than 25 minutes, and I am out of breath, winded and generally miserable at the end of it. GAAAAH!

A change in timing: moved my ribavirin med times from 0900 and 1700 to 1700 and 0100, leaving incivek times the same. Ribavirin makes me drowsy (and somewhat nauseous) so better to do at night. Helps me sleep...:)

There are two teams working on Hep C vaccine, and both promise one within 5 years. wonderful news, if it pans out, but of course we must not get our hopes up prematurely: such breakthroughs have been announced before, and if HIV research is any indication, optimism is not warranted at this point at least. Anyway, here and here.

The Wackiness advances

6.5 weeks into my incivek, with 5.5 weeks to go....unless either my platelets drop below 30, significantly increasing the risk of a stroke, or the rashes cover over 50% of my body. The night before last, I had 1 patch. Now I have at least 5; at least they are not too irritating...yet. My GE, ever an optimist, says that they are likely to grow and there is a non-negligible chance of getting one in my anus, which will certainly make it slightly less fun.

Otherwise, my anemia is certainly within acceptable (and even encouraging, since it indicates that the treatment is functioning as intended!) limits even though I can only walk for 2-3 blocks before stopping to catch a breath--and slowly, at that! And the aches and pains are growing, and cycling about, ranging from mild nausea right after medication to a thorough funk right *before* medication to everything in between.

Also, cogninitve effects: it is becoming more and more difficult to concentrate and process information. For the first time in my life, I am having problems reading: the effort puts me to sleep, as likely as not. Sensitivity to light has increased, together with some rather nifty visuals which deserve a post of their own.

But enough pissing and moaning! The good news are that the viral load remains undetectable and that I only have to keep taking incivek, which is the primary culprit, for 39 days only. The other meds will continue for at least 12 more weeks after that, and they have their own set of side-effects, but incivek is apparently the nastiest--and the most likely to work. So I guess my chances of survival for the next 5.5 weeks are relatively high...:D

New developments

I was definitely hoping to avoid the rashes associated with the treatment, but it doesn't look like I am going to be so lucky. First traces exhibited themselves around my right elbow on Friday, almost unnoticeable then. Since then it has grown into a patch covered in hard nodules, no strange colours or anything, only mildly itchy. Looking online, I find that it is common for such rashes to begin during the 7th week of treatment--which I am entering into now. Blargh. We shall see. So far, not red or blistery. Apparently, the treatment is continued while the rash covers less than 50% of the body. I guess there are ways to control it, and associated itchiness. I have an appointment with my GE tomorrow and will report afterwards.

Everybody, have a shot for me

My viral loads are undetectable, down from 15 mln 4 weeks ago. Have a drink for me; in a few months it looks like I'll be able to (cautiously) join you:

Hepatitis C Quant Not Detected <=43 IU/mL Final
Hepatitis C Quant Log Not Detected <=1.6 LOG 10 Final

A small text file

Something like 9.6 kB, 3000 amino-acids: a ridiculously small beast. The complete genome as an XLS file available here, for those who want to synthesize the damn thing themselves.

A quick update from Motel 6

My 4-week results came in today. The good news: my liver function is almost normal. The bad news: side effects are kicking in. My RBC/WBC are slightly low; so is hemoglobin and a couple of other things (potassium and calcium are barely below accepted limits). My platelets, however, continue dropping. They are down to 55 (from 110 four weeks ago, with normal range being 140-400), which accounts for bruising (the new Pro-Clik left a nasty and strangely-shaped bruise on my belly); low blood cell counts also account for fatigue and general blahness. Yesterday we hiked to Pfeiffer Falls in Big Sur and I was tremendously surprised at the difficulty I had climbing what is really not a very difficult trail. Today, right before my 1700 med-time, I had a fit of crushing fatigue, burning oppressiveness and general awfulness. However, upon devouring a large amount of whole-fat yogurt and eating my pills, I got second wind and finished the night in fair shape, even though a bit tired (I've been sleeping 10 hours a night this vacation). I am interested in finding out whether there is any possibility of developing some mild dependence on these meds, because tiredness seems to hit the strongest 1-2 hours before medication time. Fascinating. The viral loads are not in yet; I guess I'll be finding out soon, but at least so far nobody called me with directions to discontinue then treatment, which is what would have happened if they were still detectable. So in this case, no news are good news.

In other developments, I realize how difficult it is to plan one's vacation activities in one's old stomping grounds without involving going to familiar pubs and drinking endless pints of Strongbow and Boddington. I hiked and ate a lot, but it took some concentrated planning. Having kids along this time made it easier: there are many places that I would have been too bored and familiar with to go to by myself, but new and exciting for them. So it was not all bad.

Heading back North tomorrow...

4 Weeks

Had my bloodwork done today for the viral load. Will know in a couple of days, I guess. Blecch. Nose still messed up, even though it seems to be improving. Will likely have to have cautery done next month...:(

Tiny little shits

Small, even for a virus

The state of art in special, er, side effects

Currently, after taking medication (3x daily, 0900, 1700, 0100):

within 1 hour: serious pruritis in hands;
within 1.5 hours: horrible thirst (fucking parched! where does the water go?), burning/flushed skin sensation;
within 2.5 hours: a nosebleed (preexisting, aggravated by low platelet count and a bump in blood pressure?);
within 3 hours: fatigue, sleepiness (to the point that I often doze off on the Max on the way home from work).

All gone within 3.5-4 hours.

Recurrent and irregular effects: sore throat, strange abdominal discomforts (flu-like), easy bruising, etc.

WHO guide

...to Hepatitis C available here (a pdf).

Epidemic notes

Some interesting stuff here. I think the current estimates of total numbers have grown to 200 mln, but I find the hypothesis of West African origins to be most interesting.

Another funny thing

The meds are having a definite effect on my blood. I mentioned that my WBC's have dropped below standard range, and my platelets are pretty much in the gutter. The most pronounced (and disturbing) effect of that is when I get my nosebleeds: my blood it noticeably thin. It's like hot red water pouring out of the nose...:) rather than red soup, it's more like red tea.

Interferon note

The side effects of interferon are supposed to peak about 7 hours after the shot. Until tonight, I've managed to sleep through them. Today, I woke up about 6 hours after I took it, wondering why the fuck I felt like utter shit. OK, it took me a minute to figure out.

I note, however, that I notice the side effects more and more with each shot as well, and they do not all wait for 7 hours: 30 seconds after the injection, I get loopy. My speech becomes slurred and my train of thought, derailed in funny ways. Thankfully, these things only last for a couple of minutes...

Bloodwork Addendum

Liver enzyme levels continue to fall. Happy days, happy days.

Weekly Bloodwork 2

My 2nd week's results are in. According to my doctor, I am "handling it very well"; still, there are inevitable and predicted effects. My white blood cell count is now below normal--although not drastically so. Platelet counts continue to drop, and they were already below normal to begin with, due to liver malfunction. That exacerbates bleeding problems and makes my nasal infection goop blood all over.:) Otherwise, my neutrophils are a bit low, and my lymphocytes and monocytes are a tad high. Like I said, nothing special or unexpected, and I suspect, better than most people undergoing the same treatment.

A new side effect is flushing and slight sensation of heat—almost a buzz, albeit an unpleasant one—that hits as other side-effects, about an hour and a half after I take my meds.

Next week: Friday, the most important test of them all, so far, that of the viral load. It should be at least close to being undetectable, if not completely undetectable. If it isn't, it would mean that the treatment is not working and will be discontinued. Keeping my fingers and my toes crossed.

Day 18

Curiouser and curiouser: medications boost my blood pressure a bit, I presume. So the disgusting staph infection on my septum opens up and bleeds about 1.5 hours after I drop the pills. Thought you'd be interested; at least I am going to see a doctor tomorrow to take care of that.

For anyone considering this treatment, keep it in mind: these medications act as immunosuppressants, making one much more susceptible to all sorts of bacterial infections. One learns to pay close attention to any cuts and scrapes, and starts washing one's hands with warm water and soap 12 times a day...:)

In any case, being a biohazard, particular attention must be paid to cuts and scrapes anyway: bleeding on something is essentially leaving a little virological bomb that will be active for several days. Anti-viral wipes come in handy. With my recent nosebleeds I have learned and refined basic cleanup techniques, like forensic methodology.

Day 15

Wow. I must report that tonight's shot if interferon, my third one, knocked me straight on my ass. Almost immediately after taking it, I started xoning out, with rsndom pains and aches moving about the periphery of my awareness and now, two hours and a nap later, I still feel relatively immobilized. I hope it passes by tomorrow...

Day 14

Second week's blood test submitted today. Will know the results by Wed, I suppose. Most of the effects have mellowed out with more food with each dose of medication and after stopping smoking. Interferon injection spots itch like a motherfucker and are a bit rashy. Grrr. I am full of disgustupating diseases: in another related development (due to the suppression of my immune system by the meds), it appears that I have developed a staph infection on my septum that is irritating, disturbing, tc. Considering my past predilection for MRSA, it is likely to be one and shall be treated as such: another doctor visit on Wednesday, and probably some nasty antibiotic added to my regime of horse pills.

But otherwise I feel great! :D Really!

Weekly report

1st week blood tests are encouraging: my liver enzymes, although still high, have dropped almost by half since I began treatment! Yay for modern medicine!!! :)

Day 9

Some minor observations: I finally gave up on smoking, after realizing that half a cigarette multiplies the damn side effects by five. Seriously, all the fatigue and aches become much more intense and, you know, it isn't worth it. I've been considering quitting for a while now; this was the final impetus to do so.

And, I am not sure whether the lack of tobacco has anything to do with it, chalk up some mild manic states to cognitive side-effects. Even while aching and glumphing around, the brian races at a million miles a minute and I suspect I am what most people would call "animated" especially an hour or so before medication time (medication tends to put a damper on my jumping around). Interesting, and potentially productive, if can channel it properly.

Nosebleed persisting; it is not a side effect, having begun before I started my medication, but is becoming worrying. Going to see a doctor on the 14th about it. Hopefully nothing that a simple pack or, at most, a cautery, won't fix.

Week 1, Part 1: a ramble

Owee, I think I am discovering what "acceptable" side-effects are. Remember all those people who told you how harsh this treatment was? They were not shitting you. It ain't interferon, either!

Unlike poor people with HIV I am only going to suffer this horror for 12 weeks, at most. My heart goes out to them.

Anyway, this is a Saturday ramble, as opposed to a Sunday attempt to be rational. This is what happens, and what goes through my mind, especially in the 3-4 hours after I eat my incivek+ribavirin (which is about half of my waking time; side-effects begin about 30 minutes after ingestion, peak out around 3 hours later and fade rapidly. Notice that my essential disgust with the medications (which may still grow into hatred) does not affect my continuing rational approach: it is simply what must be done, and it will be done. However, I reserve the right to piss and moan about it.

Incivek is a rather dull purple colour, and ugly a priori--you should trust this pill no further than you can throw it in high-gravity environment, and perhaps not even that far; ribavirin is a pretty deep celestial blue pill (not sky-blue, unless you are on some poisoned world): the colour one associates with alien venoms, with toxic waste, with visitors from the planet where all organic life was brutally destroyed and replaced with self-replicating pretty bright blue pills. :)

Taste, irritability, flu!

Taste: as I was eating a chile verde chicken burrito the other day, I suddenly realized that it tasted like a cross between some swampy mushroom and the smell of a meat dumpster rotting in the sun. I thought that my burrito was off, but the next day, eating another one, from a different package, I realized that that is what all of them are going to taste like now. One of the side effects is the alteration of taste perception. So far avocados and peanut butter and cheese are still edible; thinking about Thai food (!!!) caused mild nausea yesterday. Thai food!!!!!!

Irritability: I have noticed that my default response to people is getting snippier by the minute. I have never had much patience with idiots, online or otherwise, but was polite by default in the past; I think that now I could be called a curmudgeonly militant atheist asshole with some justification. Finally! That's not a bad thing, really.

Flu-like symptoms: Since I have not had flu since at some point, er, sometime before I lost my virginity, I didn't know what to expect. This is what flu feels like? Flu-like symptoms? Fuck this shit. I feel sorry for all of you people who get it om a regular basis: from now on I shall never skip mt flu-shot, just to make for sure for sure that I don't feel like that ever again.

So that's a recap of my side-effectiveness this last week, the first of 12...:( And now, let's talk about the virus itself. The fucker is an amazingly nifty little beastie: it is not highly pathogenic, and is only weakly transmissible (you pretty much HAVE to take blood from an infected person and rub it into fresh cuts in your skin to get it) but yet, it is incredibly hardy. Here's a dichotomy for you: 25% of the people clear it by themselves. 8-28% develop cirrhosis (over 20-30 years). (Hah! look at that spread in numbers: that reflects the fact that heavy(ish) drinkers have almost 7 times higher risk of developing it). 2-7% die from cirrhosis and liver cancer. That's from CDC. Again, I am not entirely comfortable with such a spread. So yes: it is weak and not that big of a deal--at least until your liver hardens up and begins to scar, at which point things can deteriorate rather rapidly. On the other hand, the fucking monsterling can survive for a long-ass time outside of the body. As in, 48 hours or more; compare it to the wimpy half and hour after which HIV gives up whatever ghost it possesses. And, its systemic effects are also a cool demonstration of evolutionary principles: by interfering with liver function, it messes with your clotting factors and lowers your platelet count, thereby increasing the frequency with which you bleed (my nosebleeds are a good goddamn example!) and the amount you bleed out before it clots--thereby sending trillions more of copies of itself into the wild blue yonder, to look for another warm and friendly home to fuck up. Damn, I swear the viral colony in my bloodstream and liver is planning ahead, and not half-badly. The nastier side-effects are probably due to their attempts to manipulate my behaviour to get me to drop out of treatment. But I won't! Nyaah nyaah stupid virus!!!

The funny thing is that I feel just fine mentally (perhaps even TOO fine--haha! heehee! on occasion, I do get quite manic). I am walking around, singing three tunes at once, while writing this and contemplating the problems of the effects of complex feedbacks on the albedos of Terrestrial planet atmtmospheres. All the while my body feels like it's been stuck in a blender with a half a ton of bricks and set to pulverize for an hour or so. Yet somehow that does not dampen my generally awesome mood. Weird, that. My hypothesis is that after the awful oppressiveness of achiness and spaciness and inability to remember my ABCs for about half an hour after my 1700 dose of medicine, regularly nasty "flu-like symptoms" come as a bloody relief and my mind responds with happiness and glee.

I can only hope that in 11 more weeks I'll be able to dress like John Cleese, and with a Hungarian phrasebook in my hands go to a tobacconist where I'll be able to tell some cute punky maid, "Come to my place, bouncy bouncy. I am no longer infected!" :D

Day 5

Side effects of incivek are beginning to kick in for real. Although they are mild, there is definitely nothing psychosomatic about them! :)

Incivek Side Effects

Yes, I realize this is a bit monotonous, but these daily updates are the best I can do on weekdays. Informative posts on the aspects fo the disease and therapy itself will be weekend fare...

Day 4

Things are a bit boring. I have decided to stagger my ribavirin dose so I don't always to it in tandem with telaprevir, to be able to separate out the possible side effects. Surprise: separately, neither of them seems to have any. Together, they stress the system a bit more. That just means that I ahve to eat more fat (20 grams is recommended each time I swallow any of these pills: without it their absorprion falls to less than 50%). So now, with 4 intakes a day (9AM T+R, 5PM T, 9PM R, 1AM T) I am guaranteed my daily RDA of fats, saturated or otherwise...

A Twilight 2000 aside

...before I go to sleep tonight, I jsut wanted to tell you that the medications I am on right now are so teratogenic that I am not even supposed to touch pregnant women with a 10-foot pole for 6 months AFTER I finish treatment. This is rather awesome, actually; makes me feel like a potential superhero.

Here: Telaprevir Pregnancy and Breastfeeding Warnings

Day 3

Blecch. Nothing much to report. Mild fever with occasional chills that peaks about 3 hours after taking the pills and goes away. Itching: especially hands, and definitely connected to ribavirin: it only happens after my 9AM and 5PM doses when I take that one, and, again, persists for an hour or so 2-3 hours after medication. Frequent urination and general thirst, as predicted. (Yesterday I drank probably 1.5 gallons of Crystal Light and seltzer water--that's what I call keeping hydrated). Finally, and probably psychosomatically: I feel more energetic at night, and more fatigued in the monring (no more Mr Morning Person? I hope so! :)), and last night I seem to have slept better than any time in the past few years.

Meh, like I said, I am tired, going back to take a nap, but here's a link to alcohol/hep C connection: http://www.hepatitis-central.com/mt/archives/2007/10/living_with_hep.html

Day 2

So far, so good. The experiences I can attribute to possible side effects are: brief trembling of hands, transient moments of mild nausea, and a bit of spaciness. An occasional feeling like a incipient anxiety attack. Of course, all of those could be psychosomatic. However, the working hypothesis so far is that ribavarin is responsible for most of them. Nothing bad follows 1AM, when I only have to take telaprivir, but the 9AM and 5PM pilly times are associated with these weird feelings. More data needed! :)

A bit of history

So here's a bit of background. I was diagnosed with Hepatitis C last September, during a regular physical exam. My liver enzymes were high, my platelets were a bit low, and my doctor, who is entirely awesome, followed up with more testing. Many doctors do not, surprisingly enough. And so I got the bad news...I still have no idea where I picked it up. It ain't IVs, for one. Not me...:) And, of course, years ago, when I had a full checkup last, there were no traces of it--although it could have been below the threshold of detection of a regular blood test.

Anyway, it isn't like I was feeling bad: a bit of tension in the lower abdominal region, and occasional bouts of fatigue that I had attributed to getting old and hangovers.:)

More tests followed: it was genotype 1a (the more resistant one, but also most common in USA); my endoscopy came back clean--I have several awesome pictures of my esophagus I'll post some time soon, and my biopsy came back with fibrosis, level 2 (or slightly above). That is not horrid in itself; serious fibrosis starts at level 3, when fibrous parts in the liver start connecting to one another. Mine apparently are still scattered, but I guess reversible--if I get rid of the causative agents, which in my case were alcohol (easily done) and the damn virus. Quitting drinking was elementary (and easier than I'd thought) even though for several months after the diagnosis I still had an occasional cider. No more of that now: it is counter-indicated with my medicine. (Alcohol increases the production of a protein called nuclear kappa-factor B in bloodstream, and that protein in turn increases replication rates of Hep C virus--my viral load was over 15 mln--and contributes to liver inflammation. What's more, alcohol also interferes with the action of interferon-alfa, making my shots less effective. All around a bad idea...but I love my cider! Grrr.) Anyway, a few nights of mildly disturbed sleep were all I had to go through (and I my sleep is already pretty disturbed).

So finally now, I got through my training class (medicine and injection information, etc.) and started the full course of treatment last night. Now, everything depends on my response to treatment in 4 and 12 weeks. If viral loads do NOT drop to undetectable levels in 4 weeks, the treatment will be discontinued. Contingency plans will have to be followed, which mostly consist of hoping a new different treatment comes on market before my liver decides it's had enough--which could take years, for both. :) If the levels drop sufficiently, another test, at 12 weeks, will determine further treatment. If they are still undetectable then, I will get another 12 weeks and then 6 months of observation to make sure the infection does not recur (hey! then I'll have a cider..or a few! :D)) If they rise from the 4-week mark, the treatment will continue for another 36 weeks. In either case, I will know if I am a part of the lucky 75-80% who respond to it within a month.

The treatment itself involves a 180 mcg subcutaneous shot of Pegasys (interferon) once a week (in the belly!); 600 mg of ribavarin (antiviral) twice a day; and 2x375 mg Telaprivir (Incivek) each 8 hours (between 7 and 9, but the closer to 8, the better). The timing of the latter one is very important; I suspect it is metabolized quickly and one needs to maintain constant levels of it in bloodstream. That last one is the awesome wonder-drug: it is a protease inhibitor that attacks the virus directly. Pretty awesome, but with a host of side-effects, on which more later. Basically, this is chemotherapy-lite. (Interferon was originally developed for cancer treatments...)

Day 1

Ahhaha, it has been about 7 hours since I ate my first dose of horse pills, and I suspect I am getting what may be first indications of side-effects. Achy!!! Finger a bit shaky! Weird, but not debilitating but certainly no fun. It could also be delayed response to the interferon shot last night...

It's beginning to and back again

So in order not to turn my FB page into a treatment blog, I am going to start a separate blog dedicated to nothing but medicine and my progress for those who are interested. Of course, I am approaching this as a science experiment, as I have mentioned. I have already learned oodles about the virus and the progress of disease in question, and there's plenty where that came from! I am especially interested in the specific details of the biochemistry of this little bugger, so in-depth studies of its genetics and etiology will also give me plenty to comment on. This is brand new, and I will try to get some content up here by tonight. Any questions should be asked here as well...Cheers!