For most of my life, starting in my early teenage years, I have dealt with general joint discomfort and pain. It wasn't until my late 20's that I learned I had a condition called Ankylosing Spondylitis, or AS for short.
AS is an autoimmune condition, which is believed to attack soft tissues in the body, thinking they're broken bones. In response to this, the body generates new bone growth, causing joints to fuse or develop other things like bone spurs. Typically it attacks the spine, but also can affect other major joints such as the hips and shoulders. A lot of people who have AS also suffer from things like inflammation of the iris (the colored part of the eyes), known as Iritis. AS also brings with it a somewhat random cyclical pattern of feeling good and not feeling good. The not feeling good part is usually filled with pain, stiffness, intense "brain fog", and intense fatigue.
I can say that I have experienced all that I have mentioned above at some point throughout my life. If you look at the older posts here, you'll see some of my grumbling about my health, and that's been mostly due to AS.
AS is a degenerative condition. That means it gets worse progressively over time. While it can't be stopped, there are things that can slow down the progression. I've been on some of these treatments over the years. The first treatment was Celebrex and Plaquenil.
Celebrex is an anti-inflammatory, working similarly to Ibuprofen. In fact, it's in the same family as Ibuprofen, a non-steroidal anti-inflammatory drug (NSAID).
Plaquenil is something that has gained visibility recently as some people claim it to be an effective treatment against COIVD-19, but it was originally designed to be an anti-malaria drug. When it was prescribed for me, Plaquenil worked really well at keeping the AS at bay, in an off-label use scenario. I was on it for a long time, but it eventually started to show up during my routine optometrist visits. First it looked like I had early glaucoma signs, but as technology improved and my optometrist got new equipment, she was able to determine that it wasn't glaucoma, but was instead the Plaquenil building up in my retinae. She made an immediate call to my rheumatologist (the doctor who diagnosed and was treating my AS) and had my Plaquenil treatment stopped immediately. This started a roller coaster of other treatments from a family of drugs called "biologics".
First, I was put on Humira. Humira is a Tumor Necrotizing Factor (TNF) inhibitor. The TNF factor is something that the body has that responds to inflammation. In AS, this is an attempt to stop the autoimmune response to suspected inflammation. For me, Humira seemed to work initially, but after about 6 months or so it stopped working. My dosage was increased, which seemed like it was going to help, but then it stopped helping and I went back to the other dosage. After another long span of this not working, my rheumatologist decided it was time to switch.
Second, I was put on Enbrel. Enbrel is another TNF inhibitor, but is a different formulation from Humira. While I was on Enbrel, I got two severe colds with fevers. Fevers while on a biologic are pretty serious, as they can lead to fatality if not controlled. Also, I developed warts on the soles of my feet. The warts were uncomfortable enough that I sought medical professional treatment for them, and the dermatologist (which I often typo as derpatologist) first hit them with liquid nitrogen, then had me use a chemotherapy cream on them. My body responded very aggressively to the cream, and I ended up having to get one of those knee scooter things to keep from having to walk on that incredibly sore foot all the time. I'd share pictures of it, but they easily qualify as "not safe for life". It was a miserable time, and I finally told my rheumatologist something needed to change.
For the third treatment, she tried to get me started on Simponi, but my insurance sent me and the doctor both a very angry letter saying they wouldn't approve it and that we had to exhaust their listed treatments before they would approve Simponi. So, my doctor put me on Cosentyx. Cosentyx is a IL-17 inhibitor. IL-17 is a genetic response which has similar function to TNF inhibitor, but is a different thing that fires in response to inflammation. When I started Cosentyx it didn't do anything for a while, but after about 6 months it started to work GREAT. I had a period of about 4 months where I was able to be very active, doing 10-20 mile bike rides several times a week, but then it all fell apart. It was like I hit a wall and the Cosentyx stopped working. By the end of the year I had to tell my doctor it wasn't an effective treatment anymore.
At this point, the rheumatologist decided it was time to try Simponi again. She fought with the insurance company and got it approved. Simponi is another TNF inhibitor, similar to Enbrel and Humira. I've been on it since February, and it's hard to say yet if it's going to be effective. At this point I haven't seen any evidence that it will be, but I need to give it a bit more time.
I can say that I'm glad that I saw a doctor for this, as the condition would have likely crippled me. But at the same time, I'm not confident that my current quality of life is up there and I've essentially been a lump on a chair. I have other things going on that contribute to it, but I have yet to figure out what they are and what the right treatment is. I want to do more, but I can't. I either spend my time in a lot of pain and discomfort, or I spend it drugged up to the point of wanting to sleep all the time.
Almost a month later than the authoring of this post and I'm in a lot of pain. This is most certainly an AS flare, which is common with autoimmune disorders. In short, the treatment isn't able to control spikes in the body fighting itself, and it happens periodically during treatment, usually lasting a few days, then back to normal-ish.
I'm starting to think that TNF inhibitors aren't working for me though. The IL-17 inhibitor worked well for a period of time, but then it didn't. This might have some diagnostic value for my rheumatologist, and I need to remember it for my next appointment.
My last dose of Simponi was back in mid June. I have not refilled it because my doctor wants me to try Taltz, which is an IL-17 inhibitor, and she wanted me to be off the TNFi for 4 weeks before I start on it.
Up until early last week, I felt awful. I hurt, I felt worn down, and I kept feeling like I was on the verge of getting sick in some fashion. Now that I'm about a week past when I should have done the Simponi shot, I can tell the effects of it have left my system and I have been feeling a lot better. Sure, I still hurt from time to time, and I still have whatever neurologic nonsense is going on, but I have an energy that I haven't had in months.
I'm quite hopeful that Taltz will be the magic solution. I want to do more, I want to stop being so sedentary, and I feel like there's a light at the end of the tunnel.