How common are bladder problems with ankylosing spondylitis?
I’ve had bladder problems since high school. I’ve variously been told that it’s endometriosis, interstitial cystitis, and the more recent term, bladder pain syndrome. However, hanging around ankylosing spondylitis (AS) forums has me wondering if there’s more to it than just another health problem for the list. Could my bladder problems actually be caused by my spondylitis? A pattern emerges The first I knew my bladder problems definitely weren’t normal was when I was in high school and had to use the bathroom constantly. I even had to get a doctor’s note to be able to use the bathroom that frequently at my strict high school. It’s not that I…
Coronavirus and biologics: Some good news?
The current coronavirus pandemic is concerning, but it can be especially so for people who take immunosuppressant biologics, including TNF and IL-17 inhibitors. Medications like Humira, Enbrel, and Cosentyx are known to suppress the immune system—after all, that’s how they stop autoimmune disease. Does taking these medications put someone more at risk for coronavirus? There’s a lot of information out there, and nothing is conclusive, but I’m going to share what I’ve seen. Some of it has even reassured me! For an updated report from 5/2/20, see COVID-19 and immunosuppressants: new data. It provides data on biologics, oral steroids, methotrexate, and Plaquenil. For current research on Plaquenil, see We don’t…
PLEASE TREAT YOUR KID’S ARTHRITIS (or other illness)
Should kids be taking medications like Humira, Enbrel, and methotrexate? If you think the answer is no, let’s look at the opposite side of that question. Should kids be facing permanent pain and damage to their body? Because that’s what happens if Humira, Enbrel, and methotrexate are taken off the table. Childhood autoimmune diseases aren’t something to mess around with. There are a lot of reasons they may seem less serious. After all, kids can grow out of some of them. There can be periods of remission between flares, so it’s easy to think the next one will last forever. And from the outside, many kids with autoimmune diseases look…
Acronyms of arthritis 1: Treatments
Being diagnosed with inflammatory arthritis—like ankylosing spondylitis, rheumatoid arthritis, juvenile idiopathic arthritis, and psoriatic arthritis—can seem like being thrown into a world made of cryptic letters. Acronyms are everywhere. Acronyms for types of arthritis like RA, AS, SpA, JIA; acronyms for tests like RF, ESR, CRP; acronyms for treatments like NSAID, DMARD, MTX—it seems to never end! Let’s unravel some of these tricky terms, starting with common drugs you might hear about to treat arthritis. Soon you’ll be using them like a pro! OTC OTC (over-the-counter) medications don’t require a prescription from your doctor. In the US, some fairly effective first-line arthritis treatments are available OTC, such as ibuprofen (Motrin)…
The system shouldn’t be this complicated: A reflection on CVS Specialty
I recently shared an extensive collection of my CVS Specialty Pharmacy experiences over the past several years of dealing with them. Within a month of writing about it, I already had more misadventures to add! It’s unbelievable how much they mess up. However, I’m currently writing to share my “expert” advice for dealing with them: just call and bother them! Unendingly. Until they do what they’re supposed to. Who knew it was so easy? (Sarcasm.) Coordinating my own healthcare as someone with a chronic illness is an unending list of tasks that, if delayed or missed, can seriously harm my health. I’m lucky that my dad is able to help…
You can get scholarships for arthritis!
I never thought that having arthritis would qualify me for any scholarships, but I was wrong. There are a few scholarships available in the US specifically for those with arthritis and other autoimmune diseases, and some universities and organizations offer scholarships to students with disabilities in general. Arthritis scholarships The two big arthritis scholarships are the Abbvie Immunology Scholarship and the Arthritis Foundation Arthritis Champions Scholarship. Abbvie Immunology Scholarship The Abbvie Immunology Scholarship is sponsored by (clearly) Abbvie, the makers of Humira. They offer variable amounts depending on what kind of program you plan to attend: $5,000 if you’re pursuing an associate’s degree and $15,000 if you’re pursuing a bachelor’s,…
My CVS Specialty experiences are certainly “special”
My insurance requires me to use CVS Specialty Pharmacy for my biologic medications. If you’re using CVS Specialty Pharmacy, I can only imagine you’re in a similar situation. I would not use them by choice. I’ve put up with a lot of incompetence from them only because I have no choice—I can’t take my business elsewhere when I’d pay $5000 per month for my medication without insurance. And since they’ve got a captive customer base, CVS Specialty doesn’t ever have to improve anything. To summarize my review of CVS Specialty Pharmacy, they are dangerously slow, convoluted, and apathetic. This is based on my experience with unreturned phone calls, delayed prescription…
Wait, spondylitis isn’t autoimmune?
Until recently, I felt confident telling people I have an autoimmune disease. After all, any inflammatory arthritis is clearly autoimmune, right? My body is attacking itself and causing inflammation, so it must be autoimmune. Wrong. I was surprised to learn about a new category of conditions that has been identified: autoinflammatory. Knowing whether spondyloarthritis is autoimmune or autoinflammatory will be important for finding new treatments. But what does autoinflammatory mean? Immunity overview The immune system has two parts: innate immunity and adaptive immunity. Innate immunity isn’t specific to any one threat that your body might face. The innate immune system includes barriers like skin and mucus as well as cells…
Applying for GRE accommodations
I realized rather late that I would need accommodations for the GRE. I hadn’t thought about it much, because I hadn’t needed accommodations for high school exams or during normal college exams. But 4 hours of testing with only a single 10-minute break really wasn’t going to work for my arthritis or my bladder. On bad arthritis days, my joints start to ache and even burn within a half hour of sitting down. And on bad bladder days, I have to use the bathroom every half hour. Since I didn’t have a urologist at the time that I was applying, though, I went through the process of getting extra breaks…
Spondyloarthritis’s link to the gut: biomarkers
This week’s research is brought to you by my inability to leave anything that can be researched alone. I recently had a blood test report that there’s a good chance I have ulcerative colitis (UC), a type of inflammatory bowel disease (IBD). Constant back and forth with doctors leaves me worried that this will end up being nothing, yet hoping that it will be something. Especially since I’ve already mentally accepted that it could (probably) be something. Countless times in the past I’ve had doctors get excited because a test seemed to show something. Inflammation! A positive blood marker! A little something here on this x-ray! And then they run…
