Monday, June 05, 2017

WAIT AND SEE

To follow up on the dosage issue, my pharmacy is "special" and has been under filling my prescription but won't admit it or realize their mistake. I think I'll be switching to the local Walgreen's. It's plainly obvious that the prescription is for two vials of 2mL of MTX. Safeway, however, is reading the "Qty: 2" as one vial of 2mL. Literally the bottle fucking says:

Description: 2mL methotrexate (25mg/1 mL)
Qty: 2

Aka, two vials, enough for five weeks of treatment.

Like when you get a pill, it would say:

Description: 10mg Fuckadex™
Qty: 30

And that would be your monthly prescription of once daily Fuckadex™, not 10 pills.

Same level of expertise as the local
Safeway pharmacy.
ANYWAYS. Completely stupid and confirmed with my rheumatology office as so. So that's pretty annoying.

Meanwhile, the injections are going okay. I managed to bruise myself two weeks ago but last week I did it much smoother. I think I was trying to jam it in too quick and went at too deep of an angle. Anyways, it's still not pleasant but it's entirely doable. I'm still monitoring whether or not I get fatigue as a result of the injections. Sometimes it definitely feels like it but then again I could also blame it only getting like six hours of sleep (not enough for me).

As for the results... still in a "wait and see" type of deal. I was able to hike around all Memorial Day weekend and feel pretty okay. If anything it was my out of shape muscles that complained and were sore. The knees haven't been a huge issue in a while. That doesn't mean they are feeling great though. A couple times hiking I could definitely tell the power and flexibility is not where it needs to be. In places where before I would just bound in one step, I'd take three smaller steps to avoid bending my knee in a certain way or request too much "power" from it.

Right now I'm seeing how active I can be without causing issues. I'm trying to be active enough where I can do something and not get super sore from it. So I'm trying to exercise enough to get to that point. When your legs are sore from a three mile run it's hard to tell just how "recovered" you knees are. So hopefully I'll really be able to monitor the knees here soon. They still have a long ways to go before they are anywhere back to normal but at least I'm somewhat functional.

Tuesday, May 16, 2017

ANNOYINGLY SMALL (#)

Well, I found something out last week when I went to give myself my third shot. Turns out the vial of methotrexate they give me is 2mL and each shot I give myself is .8mL. So basically I have to go to the pharmacy every two weeks because each vial is only 2.5 doses. I'll be calling the doctor about that one. Ain't nobody got time for that. It has to be available in a larger vial.

Anyways, I didn't realize this when I went to give myself my third injection. So I was able to get up to 0.5 (hey an extra 0.1 for free!) before I ran out. I was confused for a second but then I did a little math in my head and was like "oh." Annoying. It was like 8:15pm, the pharmacy closes at 9pm and who knows if they could even accommodate me. So I injected the partial dose and then took some leftover oral tablets I had to make up the difference. So this week was a mix of the two. I'm sure that's fine in a pinch, don't see why not.

That did remind me that the pills suck though! I was nauseous almost immediately after taking them. It's this low level nausea that just make you feel crummy for an extended period. Anyways, boo to that. I am very much looking forward to my full injection this week even though I seem to feel them more and more each time. Less adrenaline pumping because I'm not scared maybe? Anyways, even when I do feel them it's no biggie.

Am I getting better? That's the question. I'd like to think so. I can swear I do feel an improvement. The arthritis is still very much there, but I haven't had a flare since being sick, even if my joints haven't felt super fresh. I was able to play soccer with Brandon and go on a run the next day last week without anything major happening. It seems my knees "warm up" faster once I start walking around.

So who knows. I've convinced myself it's getting better before and every time I've been wrong. So I'm on a very wait and see approach at the moment. I'm going to Iceland in one month (soon - yikes!) and plan to do some decent hiking, so I really hope I can do that comfortably!

Thursday, May 04, 2017

A WEEK LATER

Just a quick update on where things are. The second injection was a lot easier and I was a lot less nervous. Still a little hesitant at "the moment" but nothing major. I even felt this one a little and it didn't even hurt a bit. Just like a slight pinch or something. Honestly the needle is so short and thin it's no big deal. So that is no longer an issue. Officially over needling myself.

The issue right now is results. And I am still waiting on those! It's frustrating, I felt so much better when I started methotrexate and it got to a point about four weeks in when I almost felt back to normal. I then went skiing and did a run or two and my knees didn't feel very fresh. Not a huge flare, but not happy. And then I got deathly ill for two weeks. All the while my knees still didn't feel great.

Recently they flared up because I spent a few hours outside scrubbing my deck. Lots of bending and squatting and stuff. And that is the most fucked up they have been since starting treatment. So it's really not impact activities that flare them up, it is just use. Day to day bending and using of the joint. That deck scrub flare up was pretty bad for almost a week. It felt pretty much back to the point before I started treatment.

So here I am, a full ten weeks into treatment. And I would say my results have been "meh" at best. Now, I am at the point where I can function and walk around just fine. I can do day to day life and I'm mobile. So that's good. I really don't want to complain too much, a lot of people would kill for that. BUT, the goal is to basically put this crap into remission. And it should be possible. Assuming the diagnosis is correct. And I really hope I don't have to chase another rabbit.

Anyways, I've been trying to not do activities and let my knees recover. We just bumped up the dosage and that will take a couple weeks to really kick in. So I'm going to try to stay positive. However, right now, it's kind of a bummer. The weather is about to turn and I'd like to be able to go outside and do stuff to enjoy it.

Thursday, April 27, 2017

MY FIRST INJECTION

Hey look, this is what I did.
Felt like a total druggie on my bed with all the needles and vials and stuff. Haha, but seriously, it wasn't bad at all! Let's start from the beginning though.

So my insurance rejected the injectable methotrexate. I'm assuming they want people to take the oral tablets because they are cheaper. However, there are plenty of reasons why people may need to inject, including the GI side effects. Anyways, I was prepared for a fight. But then the pharmacist is like "but we just ran with the group discount card and it comes up to $8.64 without insurance." So one month of the tablets, covered by insurance, was $15. One month of injectable, not covered by insurance, was $8.64. Our healthcare system in a nutshell.

Anyways, I also had to buy some needles and some alcohol swabs. Both are really cheap, so all together it is cheaper than taking the tablets and with no insurance help. Anyways, at the doctor's office they gave me a quick demonstration of how to inject myself. It seems easy enough, so I was pretty confident I could do it when I got home.

I was a little scared, I'll be honest, but I just started doing all the prep and whatnot without trying to think about it. Swab my thigh with the wipe, swab the top of the bottle, insert syringe and inject air into the bottle to replace the medicine I was going to take out. Draw the medicine out. Tap the syringe to get rid of air bubbles, push until I have just the right amount, remove needle...

...shove needle in leg. Okay, so I paused a second. Palms sweaty, Mom's spaghetti. I had my left thigh pinched (plenty of real estate to work with there). I knew I just needed to shove it in there at a 45 degree angle. No need to hit the muscle or a vein, you just inject into the fatty layer. Honestly the easiest injection possible. I did pause a few seconds though and then just grimaced and plunged it in. And honestly, I felt nothing.

Instant relief. That didn't hurt at all. I honestly didn't feel anything. Maybe that's why they have you pinch your big fat fucking thigh up? Idk, but anyways, I then just slowly pressed the liquid in. It burned a little, but not bad at all. I just did it nice and slow. Once it was all in, I quickly removed the needle. No pain there either. Not even a drop of blood, just a microscopic red dot where the needle went in. Honestly, super painless and easy. And today none of the nausea I would often get with the tablets. Haven't had the fatigue yet either. So I'm feeling good about this method of delivering the methotrexate.

Now I just need the results I'm looking for! It'll also be interesting to see next week how much I freak out. Because even though it was pretty dang easy this week, I know next week I'll probably be freaking out again.

Tuesday, April 25, 2017

FOLLOW UP APPOINTMENT

Alright, had my follow up appointment with the rheumatologist this morning. Due to my condition getting slightly better overall but nowhere near where it needs to be, we are going to try the following:

  • Switch to injectable methotrexate
  • Increase dosage to 20mg a week from 15mg
The injectable form of methotrexate is fully absorbed unlike the oral dose, so really my doctor said it was like 22.5mg of the oral tablets. So I'll essentially be increasing my weekly "smack" against the inflammation by 50%. The injectable form will also get rid of the nausea I would often feel the day after taking it. So that's good.

One negative is that I have to give myself shots! I don't know how to do that! A nurse walked me through it and it's simple enough, but popping pills is a lot easier. Oh well. I'll just have to not be a baby and nut up. Not a fan of shots but also not someone who totally freaks out - just the ol' grimace and never look at what's happening method. Not sure I can do that here.

Oh yeah, give me the good stuff.
Some other notes... the doctor thinks I can get back to feeling more or less normal once we get the dosing correct. So I'm hoping that can be the case! If the increased amounts of MTX don't do the trick, then they can introduce another drug into the mix. Hopefully it doesn't have to come to that. The end of the road should be relief though, so just got to keep chugging along. Since my case is relatively mild we shouldn't have to use any of the hard hitting drugs.

I also mentioned my colds and sickness. She seems to think these weren't related to the MTX. A little side eye there, but hopefully it was just an unusual occurrence and I won't be sick 35% of my life moving forward.

Two weekends ago (aka 9 days) I scrubbed my deck to get it ready for wood treatment. I was out there for three to four hours bending over, kneeling, scrubbing, etc. And that pretty much hobbled me all week. The knees have not been very fresh feeling. So it's not just impact activities that are making them angry, it's simple things like that. I remember when they blew up after using the elliptical. So onward for answers we search.

Monday, April 17, 2017

I'M ALIVE

So that cold really sucked. All told I was sick for 15 days and hacking out stuff for a couple more. I'm back to normal now enjoying it very much. Not being able to taste... feeling like you were drowning in snot... not fun. Worst sickness in many, many years.

Anyways, I would say the progress on my knees plateaued. I've been on a couple runs since being healthy again and my knees are reacting somewhat. Not inflaming to the point where it hurt to walk down stairs like when it was really bad, but enough to hobble for a few steps and remind me that they are not normal. So I don't think the current set up is going to give me the results I'm looking for. Right now if I wanted to just exist and walk around it would be okay, but currently I can't ski, play tennis, go on a long hike, etc without bothering my knees.

I'll mention this at my next rheumatology appointment, which is in a week or so. Ugh. I'm guessing she'll just want to bump up the MTX dose (they can go up to 25mg, I'm taking 15mg) but I'm not sure if that'll fix it or if I want to take that much! I know MTX is the cheapest treatment out there because it's old enough to have plenty of generics... but I also wonder if there is a newer treatment I could take that is more effective. I'm open to whatever though. Who knows, maybe 25mg will end up tamping the inflammation all the way down.

On a funny note, the way I can tell how my knees feel is to just imagine jumping in the air. I can be sitting, laying down, whatever, I don't need to be standing or anything. Just the way my body physically reacts to this thought lets me know how my joints are. When it's bad, I almost cringe. When things are good, it's no problem. And when things are meh, like recently, it sounds doable but painful at the gut level.

Silver lining, I can probably get a medical deferment for the upcoming war with North Korea, so there's that. Maybe the nuclear fallout will be good for joint pain?