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|Liver Biopsies, MTX Dosing,
and Tabloid Update
Hi Ed: Thanks for posting my input on your site. Everything I told you was as accurate as I can remember and a lot has changed in medicine since 1983 when my curse was first manifested, although insidiously, with the medical opinion of methotrexate (MTX). At least I suppose that to be the case. My derm seems to lean toward going back on it, over Cyclosporine, but I remind her of my liver enzymes elevations and she backs off. My numbers regarding maximum dose may be misinformation, it may mean, as you pointed out, that it is the level at which a biopsy is required. My memory is fuzzy about that. Although my source (in 1983) was copies my derm gave me of med journals.
At any rate, what I DO remember is that I never want to experience a liver biopsy again!
My biopsy was done as part of a double whammy. I arranged for it to occur at the same time I was scheduled for arthroscopic knee surgery (both procedures require an overnight hospital stay, explanation follows). I was hoping the biopsy could be done while I was under general anesthesia. No way, they won't do that, you must be awake and alert at the time of the biopsy! Mine was done in my hospital room, under local anesthesia, immediately after I returned to the room from knee surgery. I got stabbed (my description) twice for two samples ($200 per stab). The stabbing doc put the samples in a small vial of liquid, then laughingly says to me, "look river samples" (no SIC on "river"). After the second stab, I said to him, "how many more times are you going to stab me?" My research prior to that experience revealed that sometimes they get kidney tissue instead of "river" tissue. After the stabbing is done, you must lay on an ice pack for many hours (eight, I think) and they check your blood pressure every 15 minutes to make sure you are not bleeding to death internally because maybe the doc got a piece of some artery along with the liver. Again, this is the true reason for the local anesthesia. That was how I was introduced to methotrexate. It was a prerequisite of my derm because my liver enzymes were elevated prior to using any MTX.
Regarding MTX dosage, my derm (at that time) had two options for dosage, 20 mg/week all in one shot, or two pills (5 mg) on the first day then one pill (2.5 mg) per day on two successive days. I did extremely well with my P on that regimen for about a year. Enzymes got elevated, derm got scared, referred me to an "expert." The expert took me off MTX and put me on the original Soriatane study. Years later, back on MTX "expert" derm uses your dosage 20mg/week all in one shot. Effect on my P was minimal. Mentioned, to the derm, the dosing method my previous derm used (20 mg/wk spread out over three days), "expert's" response was "that method was found to be more toxic" than the one time shot per week. Translation, MTX stays in the body for less time during the week; therefore, less blood level concentration, less therapy! Believe me, there was a difference in the effectiveness of the dosing regimen. Just thought I'd pass this on regarding MTX and liver biopsies.
Update: Tabloid (thioguanine) regimen (trial)
I've been on it almost one month, no weird side effects yet. Flaring is in progress, full body spots, all new, from dot size to dime size, fingernails flaring madly, palms, soles, and fingertips peeling an erupting. The old P is getting thicker scale, itching too. I am also still taking Soriatane (25 mg every other day) probably an ineffective "placebo" level dose. My lips get weird, like chapped. That's usually due to the Soriatane but not at this low level. Could be the combination. Anyway, it's probably too soon to make a fair judgement on Tabloid. I don't know if my derm is experimenting or what. I go there next week. After four weekly blood tests, maybe there will be an indication of lower creatinine (I hope) and perhaps I can plead with her to return to the only thing, that we all know works, Cyclosporine (with adequate dosage). It clears me completely (almost) and returns me to a normal life of not being ashamed to shake hands with people, etc.... I've become very clever at hiding my hands in staff meetings.
There is a lot of stress going on in my life right now (buying a new house, and all the FUN that comes with that) on top of the stress of the new flare. As you can see, by my checking in, I'm thinking about psoriasis again and sitting in front of my computer at 6:20 AM (been here for hours) sighing the blues about P. I wish it would just leave my fingertips alone so I could pursue my lifelong passion of playing the guitar! I haven't touched that for almost a month. It hurts to finger a chord.
Gee, I was just gonna thank you for posting my stuff. I guess I've been watching too much Dennis Miller! Sorry. -Stealth
Ed’s Response: If you haven’t read this yet, you must: Rejection & When the Dr. DOESN’T Know Best. This is a story about a liver biopsy gone awry.
Thanks for the update on the Tabloid study ... keep us informed.
I should have guessed you — the librettist of the FlakeHQ Anthem — are a guitar player. That just catapults your hand P, in my mind at least, to the stage of debilitating. And by the way, I became pretty adept at hiding my hands, too ... but it just didn’t work all the time. Check out "Intrigue at 30,000 Feet". -Ed