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!