charlobo-a-go-go

So I’ve been lagging on the methotrexate posts. This usually means it’s a good thing. And then it became a bad thing.

So I’ve been sitting on taking 15mg a week, and that’s been working really well. Then all of a sudden, I started to get that familiar itch. So familiar, I didn’t think twice to ask myself what it was. And then I started to panic.

What started to happen was the return of the spots, the return of the itch that never dies, the fear that yet another therapy didn’t take. Great. I thought about calling my doctor to update her, but I thought I’d let it ride and see where the disease was going to take me. Funny, isn’t it. I’m so used to riding it out that I didn’t think to call my doctor. I was going to see her in two weeks, and who knows, maybe it would turn around. It did, sort of.

So I decided to bump the dose up to 20mg. My doc and I discussed it and she felt that it was a good thing to do. So whereas I was stable and not needing to get labs done twice a month, it was time for me to get labs done weekly again. I’m at the facility so much, the parking lot guy doesn’t charge me anymore. Pity the sick girl. Thanks dude. I really do appreciate it. Parking there is expensive.

Anyway, so I’m back to weekly blood labs, and the dose got bumped up. My doc asked me what happened, and I said, “oh, the students came back to school.” So basically, it’s work. Eep.

Oh well, that’s life. I’m feeling stable right now, but I’ll update you in a week to let you know how it’s going.

Char

So here we are, five weeks in. Things being the way they are I wound up with less than my normal dose. I left a msg for my doctor, but things being the way they are again, I haven’t heard from her yet. No biggie. 

I am very happy to report that the part of my body that is most difficult to clear is almost clear. There are still stubborn spots, and there always will be, but I’m feeling really good about my decision to take this sometimes scary medication.

Just never read the side effects.

Apparently all sorts of bad things can happen with medications, and legally, I suppose, they have to list each and every single thing that’s possible.

What has been one of the more bothersome side effects is just being knocked out tired most days. My normal want to stay up late is now severely tested around 8PM. Not fun. But life’s demands require me to slow down, and this only helps it happen.

On the good side of things, clear skin is clear skin. It’s interesting to see myself with “new skin” - and as I’m getting older, it’s also equally interesting to see how my new and normal skin has aged - no longer all snappy and elastic, not as smooth, and the color of it all has changed too. With psoriasis clearing and going away, it sometimes takes on the appearance of bruises (it’s darker than my normal skin tone, not so much the black and blue). Ask me and I’ll show you one day.

Well, that’s the good news. Bad news? Not so much. Let’s keep it that way. Happy 2012 all. Be safe, be happy, and be creative!

Char

So one month in, things are looking up. I can tell where things have improved. Very much improved. 

I’m going to maintain this dose for another two weeks, then, doctor permitting, bump it up from 15 mg to 20 mg. 

Side effects so far that I’ve been noticing/feeling - headache here and there, a persistent nonproductive cough, and am I losing hair? Great. Someone said to me, “bigger picture.” Sure. I can handle this.

What’s been interesting is getting back into my own skin - that is, trying to break old, hard kept habits like wearing sweaters in any weather to cover up - getting used to the feel of smooth skin. These things might sound weird to you, but that’s been my life for many, many years. Social situations were (and still are) very difficult.

Now what would help a lot is a tan to even out these splotches. Tell you more about that another time.

Char

So I goofed up on my scheduling and decided to post when I have time. Things have been busy all around, but laundry’s done, chicken pot pie for dindin was a success, and I have a few minutes to do my thang.

I took 6 tabbies of that awesome methotrexate on Wednesday, so that’s 15 mg of action coursing through my system. I got the nod to proceed with upping the dose after my labs came out clean. So I’m going to sit here at 15 mgs for a few weeks until after the holiday. I will bump up to 20 mgs in January.

It’s hard for me to tell if things are working - my disease is so random and sometimes it’s awesome all by itself and sometimes it’s hell when I’m hopped up on meds. So I’m being cautious with my glee because I don’t want to be all pumped over nothing. Let’s talk in a few months and maybe I can tell you how I’m really doing.

The issue with psoriasis for me (just FYI it’s different for everyone. It’s not like chicken pox where if you have A then you have B. For us it’s you have A and then C, maybe B, and on Thursdays when the lunar eclipse is going down you’ll have Q. And the next person just has C. Those bastards. I digress. It’s basically idiosyncratic…) is that I have SO much of it, and I have SO many versions of it (guttate, pustular, plaque), that it’s hard for my doc to get a sense for what’s going on. She has expressed interest in seeing me regularly to get a sense for what’s going on and what my disease looks like.

It’s tough because things happen over time, and I’m so used to the slow course and disappointment over something not working, so I’m trying to be positive with my freaky drugs. I’m also trying to be positive that I can’t get some of my christmas cheer on with my friends because of the no-drank clause in my meds.

Oh well. Drink well for me, friends.

I can tell you, that at this very moment, my arms look good, and they look clear. The rest, well, is the rest, and we’ll see how that goes. Some days I’m convinced I’m clearing up on my legs (the worst of it all), but on others I feel like nothing’s changed, or worse yet, that I’m not getting better. Oh well. Stay the course. 

My fave thing that my doc said? Don’t scratch. I almost laughed in her face.  A fact of life for me is how itchy I am, and I’m not supposed to do it. Oh boy. Remember how I told you that the disease is idiosyncratic? She also told me that some people don’t itch. Fuck them.

At any rate, that’s week 3. Labs next week and every week for the next month or so. I look forward to further securing my mayorship at the lab and engaging in weird conversations with fellow sickies. Update again next week.

Char

Decided to just call it Dose instead of Day. 

Anyway, I went to Kaiser and got the labs done yesterday. Cha-ching, became mayor of the lab. Was simultaneously sad and a bit thrilled to have the honor, but face it, who’s going to say “holler at me, I’m in the lab.” We’re not there to winky wink. We’re there because our health stinky stinks. My labs came back clean (whew), and nothing major changed from the last time I took them…oh, a month ago.

What’s been awesome is that my doc is great about following up. She emailed me at 3:30 yesterday asking me to do my labs because the results weren’t in…And at that time I was actually doing them. Good to know she’s on the team, right? So I get an email from her this morning, she’s viewed all the results and we’re good to go for the second dose. Last week was 5mg, now it’s 10mg. 4 little tablets of awesomeness down the gullet. Next week, 15mg. 6 tablets. Daily folic acid. Cabbage patch dancing.

No bumps in the road yet…I can’t say I’m looking better, but all things in time. Even if this doesn’t work out, at least I know it’s time to move on to find another solution.*

Char

*Most people will say “Go to Hawaii! Get some sun.” I did that 4 years ago and that’s when I had the second worst breakout of my life. But I wouldn’t say no to a trip, FYI.

So today I started my test dose of methotrexate, the drug the pharmacist freaked out on me over .

why are you on this drug?! it’s a cancer drug! - pharmacist*

Yah, it’s hardcore stuff, but it’s been used for years with psoriasis, and, well, it’s time to try something new.

This drug I’ve been dancing around for a few years now - I didn’t want to take it because I didn’t want to do some toxic mambo with my reproductive life, and in general it just sounds funky. But, I’ve done all the drugs out there, and this is a new territory for me, so who knows.

So right now it’s just a test dose - 5 mg. Then a blood test. then another 5mg for a total of 10 mg. Then another blood test. Slowly moving up the ladder of what-the-fuck is going to happen now until I sit on top of 15 mgs. And then who knows. I better be clear because I don’t want to make this a lifestyle.

Oh and here’s the sweet part - no alcohol. The drug likes to tickle the liver, so happy holidays, me. Enjoy it without so much of a sippy sip.

But here’s to new things and new possibilities. I’m looking forward to seeing what is next in the grand scheme of things, and I’m hoping this is the one that’s going to fix it. More updates to follow.

Char

*He looked like Beaker while saying this. So to make me laugh, I bring you: