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).

RETURN OF ARTHRITIS (IT'S 2020 AFTER ALL)

Figure I should finally update this blog, it has been a while! Shortly after my last post I had my liver function test (LFT) come back significantly elevated. They had been slightly elevated a time or two over the last few years, but nothing like the spike on this particular test. Unfortunately, this is a somewhat common side effect of the leflunomide. As a result, I had to stop taking it and have everything checked out to make sure it was really the drug causing the increase in LFTs.

So I stopped taking it and braced for the worst. It's been six weeks off the drug now, and the psoriatic arthritis is definitely creeping back in. It took maybe two or three weeks before I started getting definite symptoms and then it has slowly gotten worse ever since. It is still only like 25% of what it was back in the day when I was trying to figure things out, but give it another few months untreated and I'm sure I'd be right back there. It's tempting while you're on the medication to think about stopping it and it just not coming back... but yeah, it's there. Shit isn't going away!

I ended up taking a bunch of tests, including an ultrasound of my liver. They all came back completely normal, which was a relief. You start reading about what else it could be, especially something like autoimmune hepatitis, which would fit my health profile, and you start getting very antsy for those results. Luckily everything came back completely normal, other than the elevated LFTs. So, still just the one chronic illness, thank you very much. The elevated LFTs should creep back down to normal over the next few months. They spike up way quicker than they go down.

As a result of all this, I have to start a new drug. Unfortunately, I've ran through the first line treatments of methotrexate and leflunomide, and the one other drug they use in that class tends to have even worse liver results, so it is onto the next class of drugs, the TNF blockers. So I get to start on the #1 revenue drug in America, Humira! I'm not thrilled with this, but I don't really have a choice other than not treating it and limping around. Without insurance it would cost $96,000 a year. My insurance has negotiated treatment at $60,000 a year. I pay $5 per month. USA #1?

Anyways, I should be starting that some point this week. It's another injectable medication which doesn't bother me, I injected the methotrexate for eight months or whatever it was. I did a bunch of research on it and the nastiest side effects tend to appear in people that do not match my age, disease, or "drug cocktail" profile. So hopefully it'll work and I'll take it without incident. I'll update the blog here once the treatment is rolling and hopefully I can get back to where leflunomide had me... in complete remission.

In regards to running... I am still doing it, but any speed or distance I had built up is completely gone. The silver lining of all this happening in 2020 though is that I don't have a marathon to worry about. If I had to do New York at the beginning of November I'd be completely fucked. As it is, I can stumble four miles and call it a day. Maybe I'll leave the "running with arthritis" post for another day. It is a quite interesting experience. 

WEIGHT LOSS 2020

Thought I should post something other than a monthly recap, so let's talk about my recent weight loss. Unlike my eleven pound mission in 2015, I did not document this one on the blog from week to week (obviously). Apparently I also made an effort to drop some weight from August to October 2017. I have no memory of that, but I have a bunch of weigh in and food logs in My Fitness Pal so I guess that was a thing. Basically the pattern is every two or three years I have to make an effort to get back to goal weight by losing about ten pounds.

Day to day I do not count calories in any formal way. Many days I just roughly track them in my head, ballparking stuff, and that is pretty successful. I think I did the math at one point, and let's say I need to eat 2200 calories a day to maintain my weight. If I gain ten pounds over two and a half years, that means I'm eating something like 2235 calories a day on average. Which is pretty dang good when you think about it! Basically, the weight slowly creeps on, which makes it really hard to notice. I don't regularly weigh myself or anything, so usually the first alarm bell is my pants being noticeably tighter. I'll ignore it for a month or two, then one day I'll step on the scale and that usually sets something into motion.

Tracking with MFP.

This time when I stepped on the scale my weight was 180.4. Anything over 180 for me is definitely "red alert" time. I had stepped on the scale every so often over the years and my weight usually was no more than 176. I'd like to be at 170, but when I'm only six pounds over I'm not ready to "buckle" down. Most of my pants still fit fine at this weight. Once I'm more like 178... then the pants get tight. Anyways, I knew weight had slowly crept on, I could see it in the mirror,  and now faced with the scale reporting over 180... I went into immediate action.

My goal weight is 170. When I lost weight back in 2015, I set it at 165. If you go back to the final week or two of that series, you'll see that I figured out 165 is too low. Anything under 168 and my pants start falling off my body and my face gets all angular and I don't like the way I looked. I could buy skinnier pants, but naw, I like how 170 looks and my entire wardrobe is based around that. So 170 it was! That meant I needed to lose 10.4 pounds. Easy enough.

Like all the times previous, I simply counted calories. This worked for my initial weight loss back in 2011 and each time since. I set my goal to lose the weight in six weeks, so I had to lose between 1.5 and 2.0 pounds per week. This put my daily caloric intake at 1700ish. The first few days I was starving. All the memories of weight loss were flowing back. However, I was determined to stick it through. I knew if I did it, it would work, and I would be done in six weeks. So onward I pressed. After the first few days, I was no longer ravenously hungry.

Honestly, it was pretty uneventful. Maybe even easier this time around with the pandemic, I was stuck at my house all the time and didn't go out to eat much or anything. So it was very easy to control my meals and stay on track. By two weeks in or so, the 1700 calories actually felt satisfying. The results were matching the calories in/calories out math almost exactly too. Funny how that works. Anyways, I ended up hitting my goal in six weeks, just like I had set out to do.

I will say that the last week or two, when I was a pound or two away from 170... those were hard. For whatever reason my mental game let up and I started to crave gorging on food and all of a sudden I wasn't satisfied with 1700 anymore. So they kinda sucked. However, I was determined to stick with it. Over the Fourth of July weekend my family did some socially distant camping, so I knew I was going to pig out and live it up then. So that "reward" kept me on track to hit my goal.

Anyways, it is now a month later and I am still right at goal weight. I have continued to track in My Fitness Pal to maintain. I don't know how long that will last, but it has definitely helped me stop snacking a couple of times. Previously, I could house 400 or 500 calories of Ritz and cheese at night as a snack. Now, I'll look at my tracker and have a popsicle instead. Little things like that can really help that slow weight creep from happening. I'm sure it'll eventually happen again, but maybe I can last a little bit longer this time around.

MID-SUMMER UPDATE

Things are ticking along. I've been good about getting out for two runs during the week and the long run on the weekend. One difference this summer is that if I'm out of town on the weekend, I'm not doing my long run that weekend. I'm not training for anything, so there's no reason for me to to scramble to get those done. Normally I'd do twelve miles on a Monday night or something to make up for it, but not this year. So I've missed two weekends because of that. Otherwise, perfect attendance. I've even thrown in a half marathon distance run in addition to my usual 10 miles.

Ten miles in the heat last weekend.

My body is definitely back to one hundred percent. So that is nice! Heart rate is back to where to used to be and my legs are officially back to normal. FINALLY. For a while they were like 95% of the way there, but on some long runs they would ache and bitch dramatically toward the end. Kind of felt like the end of a twenty mile run or something. However, in the last month or so, that has gone away too. Ten mile runs now feel like the ten mile runs I am used to. I honestly feel back to normal other than the fact I am slower than I used to be. That is definitely a thing. However, I have time to work on that. Hopefully by marathon training time next year I'll back back to my 2019 shape.

It has been HOT recently. The other day it hit 100 degrees for the first time in two years. I almost wanted to go out and run just for fun while it was triple digits. However, a three block walk left me sweating like a pig, so I decided it probably wasn't the best idea. The day before that it hit 99 degrees. This also happened to be long run day. Fun! I meant to get up and out the door earlier... but you know how it is. When I left at 11am it was 80 outside already, and by the time I finished nearly two hours later it was 90. Phew! It was manageable though. I just ran slower and tried to stay in the shade as much as possible. I also had a pit stop at home for water at mile six. I just combined my six mile loop and my four mile loop to keep things simple.

WELL, GUESS I'M NOT DOING A MARATHON

Not a whole ton new to report. I'm continuing to tick along and see marginal improvements here and there. Nothing major, but my true "easy" pace is slowly dropping, my speedwork is going well, my heart rate has come back to where it should be... all good things! I recently even worked my long run up to twelve miles without issue. Compared to where I was just three months ago, this is huge progress!

The New York Marathon was unsurprisingly cancelled this week. I had been expecting that and neglected to start officially training in mid-June like I normally would have done. I could see it coming miles away. I'm glad they cancelled it now though and didn't string us along. I won't seek a replacement, because, frankly, there won't be any. I also don't want to do a virtual marathon. Big "hell no" to that. Long story short, I will have no marathon in 2020. I'm cool with that.

So much winning. USA #1!

The New York Marathon will be giving us the option to defer our entry to 2021, 2022, or 2023. Which is great! The lottery odds are not good, so I'm glad I don't have to wait until I "win" it again. I plan to defer to 2021 and do it next year, assuming it happens. This year was supposed to be the 50th anniversary and they confirmed they'll be celebrating that next year instead. So hopefully it happens, I can do it, and I come back with some sweet 50th anniversary swag.

Other than those options, it is just the same old, same old over here. Definitely getting sick of the whole pandemic thing and a little angry that the United States has handled it so very poorly. I've been a very "good boy," but a lot of my fellow countrymen have not. So now we are all going to get punished because apparently some people thought everything was a hoax or plot by Bill Gates or something. So that's cool.