A plug

You know, now that I have officially attained SVR and am essentially cured, I can do my obligatory Big Pharma plug.

To wit: I have seen people on Hep C boards who have had a serious adverse reaction to incivek, had to discontinue treatment and are now quite understandably pissed off. But their anger goes overboard. They say things like "incivek should have been black-boxed from the beginning" and even "it should never have been allowed on the market".

I can respond to that in a rude and a polite manner.

Rudely, and simply: bullshit.

Politely, and with consideration for them: a medicine is black-boxed if there are deaths associated with it, and there have been none until several months ago. I also suspect that the deaths in question resulted from people continuing treatment even in the presence of some horrid adverse reactions. It sucks: ultimately, nobody is to blame for the side-effects; we are all victims of genetic lottery. I feel sorry for those who had to discontinue treatment, but why would they want to deny it to others? It has worked for many, including myself, after all. Spite? Jealousy? Blech.

So yes, I am officially plugging incivek here. Yes, it is a dangerous drug with nasty side-effects. yes, you may be unlucky and have a nasty adverse reaction (I will probably have the scars from medication rashes on my elbows for the rest of my life--and that was a "mild" reaction)--in which case, stop the treatment immediately! And yes, you may be unlucky and have a strain of virus that is resistant to it. But 4 out of 5 chances, on average, are better than none.

Stop holding your breath.

If I told you you had a beautiful body, would you hold it against me? I am no longer infected!

Yes, the final results are back and the damn things are apparently gone from my body. Some damage to the liver has been done, of course, both by the virus, and, I suspect, by the treatment, so i can no longer drink like I used to. But then again, a handle of bourbon a day is not really recommended for anyone!

Would you like to come to my place....bouncy bouncy? One drink cover.

It's beginning to...

I waited for a few days after my cidery Saturday to go and have blood drawn for the last batch. So far, everything except for the viral counts (the most important one) is back and is normal. Of special importance are liver enzymes: perfectly fine. I guess I'll have to wait until Monday or so to find out the final results. I will hold my breath and sit in the corner, building up blood pressure and popping capillaries. On second thought, I'll have a drink of dry cider.

Interferon problems

I certainly hope I won't have to do this. My final tests are next week; everyone pls to hold their breath. I certainly am.
Chronic hepatitis C: Interferon may be harmful in re-treatment

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.