Tuesday, March 30, 2021

SOMEWHAT SUCCINCT SECOND SIMPONI SHOT SUMMARY

I've never looked forward to getting shots so much in my life. Between the COVID-19 vaccine and my second Simponi shot, I've started to get hearts in my eyes whenever I see a needle.

Flashback to the weeks after my first shot... I felt almost immediate relief. I was very suspicious of some sort of placebo effect because relief that quickly off the first shot seemed suspect. The proof was in the pudding though, and I was able to go for some short runs and stuff without any sort of ill effects. I did feel much better across my whole body. While the worst of the flare had subsided before the shot, I still didn't feel great. After the shot, I almost felt normal. I still wasn't normal, but I was much closer.

Over the weeks it seemed like the effect slowly faded. I guess that makes sense when the shot is only once a month. I looked up the half-life of Simponi and it is two weeks. So if I'm doing my math right, that means at the month mark you are rocking about 25% of the original shot. There is the potential that I could start feeling arthritic a week or so before each shot, which would suck.

Before the second shot I did feel much better than before the first shot though. So I was still getting some effect. What I'm hoping for is eventually, after a few doses, it will have tamped things down to the point where I don't start feeling stuff again before my next shot. Let's say a terrible flare is 100 on the "PsA scale." Before my first shot, I was at like a 50. And let's say each shot you can subtract 50 points. So I was at 0! I felt great! But slowly it crept back. But let's say every month I only gain 35 "inflammation points" back. So after my shot yesterday, I went from 35 to -15! And before my next shot I'll only be at a 20. So a few shots in, I'm suddenly not in the positive "I feel arthritic" territory.

That's my hope at least. That's what I going to tell myself will happen. I mean, I did feel immediate relief again after my second shot. So much better. Hopefully by the time my third shot rolls around, I'll feel better than before my second shot, even if I am feeling a little arthritic again. And then four or five shots in, maybe I'll have it back in remission status. That would be great. Because I'm having no bad side effects (that I know of) to Simponi and the fact that it is only once a month makes things really easy.

Anyways, that's the update. I'm getting out for runs twice a week. My long run right now is four miles. I'm completely out of shape again. Oh well!

I made a thing in MS Paint. Please clap.

Friday, February 26, 2021

NEW YEAR, NEW DRUG

I had my appointment with the rheumatologist and she agreed that Humira was definitely not working for me. Not completely unusual, sometimes a person might have to try 2 or 3 drugs before finding one that "clicks" for them. So she recommended I switch to Enbrel, to which I readily agreed.

It's funny, when she originally put me on Humira, she thought my insurance company would reject that and try to put me on Enbrel instead since it was slightly cheaper. Well, when she tried to get me onto Enbrel they rejected it! Fucking insurance companies. Seriously a worthless, needless, profit sucking extra layer of bureaucracy. ANYWAYS, they want me on Simponi first instead. Fine, whatever.

According to the doctor, these are all pretty much the same thing. Humira, Enbrel, Simponi... it's whatever. There's no way to tell which is going to work for one person and not work for another. If for whatever reason Enbrel didn't work, we would have tried Simponi next anyways. If for whatever reason Simponi doesn't work for me, then we should be able to get coverage on the Enbrel.

Simponi is an auto-injector pen just like Humira but the injection is only once a month. So maybe that will be a good thing. Less shots, although I don't really mind them. If I do end up doing Enbrel, that is once a week. I don't really care as long as long as it fricking works!

I did my first injection of Simponi last night and it was pretty unremarkable. I did "feel" this shot more than Humira though. Not sure if it has a bigger needle or the medicine just burns more for whatever reason, but it was definitely more noticeable than the Humira injection. Still though, in the grand scheme of shots, very minor and almost painless. And I'm done until March 25th! So that's good. Although, the numbers person in me wants clarity on this "once a month" thing. Because months have different days. Is it every four weeks? Or sometimes it is just 31 days between shots and other times it is 28?

So yeah! Like all of these drugs, it can take a couple of months before it really kicks in. Which kind of blows, because I've already felt like crap for a couple months. Silver lining though, if there was anytime in the recent history of the world to feel so crappy you just want to lay around in your house, it is right now.

Sunday, January 31, 2021

HUMIRA IS AN EPIC FAILURE

On Italian train w/ non-Fed up knees.
So, shortly after that last post things got pretty bad. I went and played basketball and while I was able to do so without too much pain, it left me in a horrible inflammation spiral. I was literally limping around for four days and my whole body hurt. The basketball reaction was just a symptom of a larger problem though, my medication not working.

Even after things quieted down after the basketball fiasco, other things started to go wrong. I started getting arthritis in joints I hadn't felt since before being treated. It was back in full force. Honestly, Humira seemed to be doing nothing. I had never felt even close to that bad since I started treatment. Eating hurt. Typing hurt. Basically just existing hurt when it was really bad. Also, with a raging auto-immune condition, you get fatigue. And that has hit me hard too. I am tired all the time. I'll sleep for ten hours and then be ready for bed eight hours later.

So yeah! Needless to say, running has gone by the wayside. Luckily with COVID there are no races to fuck up, so it's whatever. I am managing to go out there once a week and run a 5k. That seems to be tolerated enough by my body and at least let's me feel like I'm doing something. But other than that it is a lot of sitting around on the couch. Even just walking around and doing stuff for any extended period of time can irritate my knees, so I'm laying pretty low.

I have an appointment with the rheumatologist on Tuesday, so I'll be reporting this all to her then. I have a feeling I'll be switching medications. Which, I'm all for. I am FOUR MONTHS into Humira treatment and I've never felt less relieved while being medicated for psoriatic arthritis. So Humira can go fuck itself. I mean, it's probably not the medication's fault. Whatever "pathway" or whatever it is called is being blocked is obviously not the main cause of my inflammation. Methotrexate and leflunomide basically just slow down your whole immune system, while Humira targets one part... I'm pretty sure it targets the wrong part for my specific cause. Which is why it works for like 2/3rds of people and the other third have to find something else.

Happy 2021 I guess.

Wednesday, December 30, 2020

POST HOLIDAY UPDATE

Hope everyone had a good holiday season! It was a bit weird this year and I look forward to things (hopefully) getting better next year.

In regards to running, things are going alright. Just alright. The Humira has not gotten me back to 100% with the arthritis into remission. I'd say I'm about 80% of the way there. If I wasn't doing anything physical and just going about my day I might not even notice it. However, I can't deny that this psoriatic arthritis is still there and affecting my running.

So that's been a bummer. Mostly it is just leaving me sore and creaky for much longer than I should be. Once I am out on a run it usually feels okay, but my recovery times are not where they need to be. It's also making the runs themselves harder because I'm battling whatever inflammation is still in the knee. Between this and the weather going to shit... I'm not feeling particularly motivated. I skipped my long run three weekends ago because I was wrecked from the long run the previous weekend followed by the mid-week runs. And then two weekends ago it poured nonstop and I wasn't going to go out in that. I did manage to get out there and do ten miles this last weekend... and it was much harder than it should have been.

Overall I feel like my body was in a better spot six week ago during my last post. I don't know if the weather is contributing to the joints not feeling great, but I definitely have not improved. I would say I have slipped backward to be honest. Again, the arthritis is basically gone on just a day to day functional level, but I can't really run at the moment without being sore for days.

Humira has officially been put on check. When you are an $8,000/month medication I expect you to work decently. So if it turns out it can't give me the full relief that methotrexate and leflunomide then that's really disappointing. I'll give it a little more time... of course they say it can take 3-6 months to take full effect, blah blah blah... whatever the case I don't feel like I should be backsliding at this point. Also, it seemed to be working quickly when I first started it so I have no idea why it would work great, suck for a while, and then work well again.

ANYWAYS, that's where things are. I'll give Humira a little more time and see what happens. I have an appointment with the doctor at the beginning of February, so that should be a good time to make a call.

Saturday, November 14, 2020

SIX WEEKS INTO HUMIRA TREATMENT

Well, the election ended up being a little closer than my prediction, but I'm going to go ahead and call it good as I whistle and walk away!

The other night I had my fourth Humira injection, six weeks to the day of my first injection. The treatment is going really well. The "sorta" headaches I had when I first started have completely dissipated. There are no other side effects that I am experiencing. So that's very encouraging. When I was rocking and rolling on leflunomide I had my arthritis in remission without any side effects as well. My hope for Humira was to achieve that same thing, and it seems to be coming to fruition.

I'm not going to declare 100% remission yet... I have to get my mileage back up and make sure everything holds up. However, I think I have a pretty good shot of that being the case, given that Humira is a more aggressive treatment than leflunomide and methotrexate. It would be really weird for them to work great and have Humira come up short. But who knows! I am back up to eight miles on my "long" run... I think once I am running 10 or 12 on the regular without any issues, it will be pretty safe to call it a success.

As for the injections themselves, I just want to mention how freaking easy they are again. This last one I literally did not even feel. Normally you feel a little something, but I honestly could not feel it at all. So that's been a huge relief. I haven't had any bad injection site reactions or anything like that after the fact either. With the injectable methotrexate I was coming to dread the injections... I honestly could not care less at this point with the Humira.

The only thing I really seem to be fighting is the weather. Daylight Saving Time just ended, meaning all evening runs are in the dark now. Oregon weather has switched to "winter" mode, which means a lot of rain I am trying to work around as well. I just don't have the motivation to get out there when it is cold and wet. This is a tired, old song though, nothing new. Most years I at least had a race to look forward too, however, with the pandemic, obviously those are all gone. So for now, each time I get outside and do a run it is a small victory. As long as I can keep getting out there three times a week, I'm calling it good.

P.S. My liver tests are back to normal and I can drink again. Not that I'm a huge drinker, but it will be nice to at least have a beer here and there again.

Sunday, November 01, 2020

2020 PRESIDENTIAL ELECTION PREDICTION

Well, it's time for this exercise in futility again. Every four years try my hand at predicting what will happen during the election, failing miserably half the time (2/4, 50%). I try to get my prediction up a few days early and have a couple differences from the "conventional wisdom" (which these days, is mostly 538).

If you want to look at the older ones, here is 2004, 2008, 2012, and 2016. Below is this year's prediction. My next post will be back to running and how Humira is going as I just had my third injection on Thursday.



There it is. As of right now, the differences from the 538 model are Iowa going for Biden and Georgia going for Trump. Also, 538 is saying an 8 point margin nationwide for Biden, I'll go with 9. Tipping point state will be closer though, so it's clenchin' time!

Electoral Vote

Biden/Harris         341
Trump/Pence        197

Popular Vote

Biden/Harris         54%
Trump/Pence        45%