MEMORIAL DAY MUSINGS

Well, I guess I have kind of settled into a once a month post rhythm. So welcome to your end of May Thomas update!

The monthly Simponi shot was effective even longer this time around. In fact, I got to the 25th of the month without feeling the need for it. My knees still felt A-OK on the 25th. So that was encouraging! I do think the relief is building in my system, so hopefully another two shots, six total, and I'll be at full effectiveness. If I am already getting month-long relief four shots in, that's probably a good sign.

I am not going to celebrate too early though. I thought Humira was working for a long time too. I was even able to get back up to 10 mile long runs (I think I even threw in a half marathon distance at one point). All of a sudden though everything went to shit. So right now I am still very much proceeding with a "wait and see" approach.

Last weekend I was finally able to get back up to 10 miles on my long run. I've been increasing it by one mile each week being very conservative and deliberate. It was really hard... I'm not going to lie, it was a huge effort to go ten miles and my body felt like I usually do after a twenty mile run. However, my knees felt 100% fine. I think I am just very out of shape. Ten miles is a LONG way for me right now. So I'm not too concerned over the fact I was pretty sore for two days after that. My knees were seemingly fine. Hopefully it is just the matter of getting my distance legs back underneath me.

The pressure is on though, because I got accepted into the New York Marathon for 2021. I was supposed to run it last year but it was cancelled due to the pandemic. So I deferred to this year (with 2022 as a second choice) and I got in for this year. Which... I'm not thrilled about. I was kind of rooting for 2022. I have to decide for sure in a couple weeks, so I'm going to continue to monitor my body. I have plenty of time to train, I just need to make sure my body is going to be up for it. And then I'll just need to run like a 4:45 or something. This will not be a fast marathon. I am so out of shape. If I can maintain a 10:30ish pace for 26.2 miles it will be a minor miracle.

So yeah, that's about it. Ready for summer to start!

APRIL SIMPONI UPDATE - SHOT THREE!

Well, the pattern seemed to continue this past month. The second Simponi shot had a bit more staying power than the first one, and I only really began to feel the need for the next shot about a week before I was able to take it. Down from two weeks the previous time. So maybe the "building efficacy" theory I proposed in my last post was on the right track!

I took my third shot on the 25th and again felt almost immediate relief. It takes about 24 hours or so to "kick" and then after a few days I feel like I have the full effect of the shot. I will say that it is similar to Humira in that I haven't felt "cured" at any point. So while I do feel much better and I'm able to do stuff, I do feel like a little creaky and old. I wouldn't expect full relief right away though, that is something that gradually built up through time with methotrexate/lefluonomide so if Simponi keeps working, maybe the back half of my first year on it I can get there.  It just needs to keep working and not faceplant like Humira.

As for running, I'm slowly getting back into shape. It is such a huge pain the ass to be back starting where I am again. It was kind of fun the first time around after getting treated to get back in shape ... now this is the third time I've had to crawl back from the clutches of "out of shape-ness" ... I'm over it. Running 11:00/mile is no longer cute. It is just annoying. Because I worked so hard to claw back to what I considered adequate... to have that taken away, AGAIN... ugh.

Anyways, I'm trying not to let that get me down. My mental game has to be on point! So I'm running by feel and just trying to ignore the numbers. My long runs should be at an easy pace, so if that means I'm running 11:30/mile, then that's the pace. If a 9:55 pace is tempo, then that's my tempo. If I am able to keep going then these numbers will come down. Patience is the key. As long as I ease back into it, listen to my body, and wait for the medication to kick in... hopefully by this summer I can be somewhat back to my normal self.

So yeah, that's about it. Nothing exciting to report other than Simponi continues to appear to be working, although I'll have to be patient and see if I can get the results I ultimately want. Oh, I did get both of my Pfizer COVID-19 shots this past month, so that was a very positive development!

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.

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.

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.

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.