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.

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.

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%

HUMIRA TREATMENT FOR PsA - THREE WEEKS IN

I'm pleased to report I'm already feeling relief of my psoriatic arthritis symptoms with Humira. I did my first injection about three weeks ago and the second injection about a week ago. They say it can take 6-8 weeks to really kick in, but I'm already feeling a lot of relief. Since my case is more moderate, it might made sense that I am feeling it kick in earlier than someone with a really bad case. My knees almost feel normal again. I do overdo it playing basketball over this last weekend because I was feeling pretty spunky and was barely able to get up the stairs when I came back home... so I'm not all the way back yet.

As for the injections themselves, they are super easy and painless. I already injected methotrexate, so injecting Humira versus popping the leflunomide pills is not a big deal for me. It's pretty funny though getting calls from the nurse aide and pharmacist, trying to reassure me how easy it is, offering to walk me through the process, etc. I'm fine guys. I've been poked more than a pincushion these last few months, I'm over it. I definitely had some hesitation the first few methotrexate injections, but this time around... whatever. Jam it in there, I honestly don't care.

And not to sound like an advertisement, but these auto-injector pens are super easy. A little wasteful, the tree hugger in me hates the waste... but they do make it super easy. Basically painless as well; I could barely feel each of my first two injections. I'm sure at some point I'll stab it right into a nerve or something and it'll hurt more, but so far I've felt very little and the drug doesn't burn or hurt going in either. Overall it is definitely easier than when I was injecting methotrexate manually every week.

In regards to any side effects with Humira, the only one I have noticed, and this is the most common one people get, is headaches. I haven't gotten actual headaches, they are sort of almost like the start of a headache... but then I never get a headache. It's hard to explain, but I'll notice the feeling and it feels like I'm going to get a headache but then it never comes. It's just lightly threatening for a certain period of time and then it goes away. Not ideal, but honestly not that bad. If I was getting actual headaches, it might be a different story, as this is something I am feeling just about every day. Although, honestly, I don't know of I got a "sorta-headache" yesterday or so far today.

Throwback Thursday.

I'm hoping as my body adjusts to the medication, the headache side effect will go away. With leflunomide, I don't remember if I put this in the blog or not, but the first few weeks I had horrible diarrhea. That was basically the most common side effect for that drug too. I actually lightly shat my pants at work (TMI?) like the second day I was on it. And I would get five alarm poop alerts almost out of nowhere. However, eventually my body figured it out, and after a couple of weeks I was back to normal. So I'm hoping for a similar adjustment period here. Since these aren't "real" headaches, I could probably live with it, but I am hoping they go away.

Other than that, things are ticking along. I have another, hopefully final, liver test at the end of the month. That should hopefully show my liver enzymes back to normal. I haven't had a drop of alcohol in two and a half months. Honestly, I don't miss it. However, it will likely come in handy on election night, one way or another.

RUNNING WITH PSORIATIC ARTHRITIS (PsA)

So the last month or so has been a trip down memory lane. I stopped taking leflunomide about seven weeks ago after my liver function test spiked. For the first couple of weeks, I still felt basically normal. That medication has a long half life so it remained at a decent level in my system for a few weeks. I probably started to feel the first twinges of PsA after about two weeks. Slowly them symptoms have come back on, although, as I mentioned in my last post, they are nowhere near where they were before.

Here is a sample run over the last few weeks....

Mile 0.0:    I feel stiff and old. Not sure if I can do this today. We'll see what happens when I warm up.

Mile 0.5:    Warmed up and ready to go! Don't feel a thing! Do I even have arthritis? Shit - I think I feel better than I ever did even when it was treated. Maybe it magically went away.

Mile 1.0:    Still feel good! Four miles should be no problem. Maybe I can do five. Maybe I don't feel better than when I was treated, but this is no problem!

Mile 2.0:    Yeah, four miles is enough. Starting to get a little tired. Legs are feeling a little slow. Still, shouldn't be a problem. Still feel pretty good.

Mile 3.0:    I have to do ANOTHER mile? I feel like I'm running in molasses. My heart rate has spiked. God my legs feel heavy. I just want to be done.

Mile 3.9:    This is taking every ounce of strength to finish this run. I feel like I ran a half marathon. My whole lower body is zapped and sore. I hope I can walk up the steps when I get home.

To recap... I feel good when it starts but I peter out pretty quick. I think because my knees are inflamed and weak, all the muscles, tendons, and ligaments around my knees are working overtime to do some of the work a normal knee would do. This results in the more rapid "breakdown" of my energy levels and muscle condition. My breathing is also labored because I'm working much harder than usual for the same level of forward momentum.

This is all very reminiscent of when PsA first crept in on me back in 2015/2016. The first signs were definitely in 2015. I did a run on Valentine's Day with Coach Jim that I view as the first time PsA symptoms smacked me in the face. I was able to train and run a marathon that year, but my knees never did feel quite right. At the time the PsA would kind of come and go in waves, so I was able to train during the good times and ride the bad times out. I still ran 3:39 despite all of that.

In 2016 the symptoms started becoming more problematic. They definitely started to escalate after the marathon and by Valentine's Day of the next year, I could no longer ignore something was going on. By May, I had to shut things down and seek professional help. Take a look at this quote from a blog post back then:

"Something is jacked up and it's primarily affecting my knees. The my knees themselves feel fine, they don't hurt when I run or anything. So I don't think it is anything with the knees themselves. But whatever is out of whack is putting a lot of strain on the muscles and ligaments around my knees so afterward they swell up and complain."

Okay, obviously I was quite wrong about it not being the knees themselves, but those symptoms back then match exactly what I am experiencing now. My knees feel fine during the run, but afterward they hurt and a bunch of surrounding muscles hurt too.

Maybe someone is reading this and wondering if they have PsA based on the way they feel when running. I'm not sure if this is what most people would feel, but my experience has been very consistent over the years. It is very confusing because you'd think if your knees were fucked up they'd hurt while you ran! Well, they don't. And in my case, it led down a rabbit hole in the medical system and it took me another nine months or so to actually get diagnosed correctly.

Anyways, I look forward to my new treatment working and getting the PsA back into remission! I will have a post about how that is going after my second injection (they are every two weeks, I did my first one a few days ago).