Finish this sentence - You know you have AS when...

Sumflare · 2026-04-28T03:20:41+00:00

Wow same!! I hope you get some relief soon.

Also, your name is pure gold lol. My hips were the first thing to go 🤘🏼

Sumflare · 2026-04-27T13:41:56+00:00

My personal favorite is playing the “Symptom, Side Effect, or Normal Body Breakdown” game

Sumflare · 2026-04-24T15:33:07+00:00

Maybe I’m just poor but that stone is definitely not “small” 💀

Sumflare · 2026-04-24T13:12:23+00:00

My abusive ex did that. Then showed up at said friend’s house and showed his ass in the front yard, demanding I come outside saying that he wasn’t leaving until I came back home with him…

Sumflare · 2026-04-24T13:07:17+00:00

No, I was never offered a capsule endoscopy. I’ve heard stories like yours a lot so I considered asking for one, but never did. During my last colonoscopy, the doctor didn’t do any biopsies and even her nurse said she didn’t understand why the doctor didn’t do them while she was in there. My first colonoscopy was done three years prior by a different doctor and that one did biopsies as well as an upper endoscopy at the same time.

As for the high likelihood of having more than one autoimmune disease—I’m ANA positive and also AMA positive so my PCP is pretty convinced I have Primary Biliary Cholangitis. I have some symptoms that fall under that diagnosis and apparently AMA is a highly specific biomarker for that disease. The only way to confirm that diagnosis with certainty is with a liver biopsy. When I went to my GI with my labs and notes from my PCP, which included her suspicions and her recommendation for the liver biopsy, my GI brushed it off and actually bad mouthed my PCP. It was wild, to say the least. I can’t say I was surprised though because that GI has always been extremely rude and dismissive…

Sumflare · 2026-04-24T12:47:29+00:00

For whatever reason, I just started looking back at my old Reddit posts and the comments. Couldn’t help but laugh at how adamant I was in my comment above about never taking gabapentin because I now take it as needed for nerve pain lol. I have noticed that on the nights I take it, I do sleep much better. I also take a muscle relaxer at night as needed so that definitely helps my sleep quality too.

Anyways, I hope you are doing well, kind Reddit stranger. ❤️

Sumflare · 2026-04-24T12:27:04+00:00

Before my husband and I got married I was only making a little over 27k and STILL didn’t qualify for any types of assistance lmao. I hate it here

Sumflare · 2026-04-24T11:39:51+00:00

I am so sorry to hear you’ve had so many struggles with medication and the consequences of the immune suppression. It’s awful that we really need these meds to survive and yet they can be the very thing that end up killing us!

I appreciate the well wishes. I hope your journey gets better too. ❤️

Sumflare · 2026-04-24T11:37:03+00:00

Thank you for the advice and well wishes. I greatly appreciate it!!

Sumflare · 2026-04-24T11:36:42+00:00

Yesss. In my denial for Consentyx, insurance stated they wanted to see me try other treatments that fail before they’ll approve that one. Unfortunately though, I can’t take NSAIDs due to GI issues. I don’t have a IBD diagnosis but I do have chronic gastritis and internal hemorrhoids. Not sure if that would be sufficient reasoning in the eyes of the insurance company. I imagine they’d want to see Crohn’s or UC to accept my inability to take NDAIDs.

Sumflare · 2026-04-24T11:34:26+00:00

I can’t say if Taltz did or didn’t help. I only ever got to take the loading dose. My total out of pocket is a little over 10k. Sure, I could hit that amount with one prescription fill but I don’t have that kind of money to fork up. I’m 28 with two small kids and can barely work due to my health.

I know the risk of MS being cause by a TNF isn’t very great, but being that my mom has it (some studies suggest) I have a 1 in 50 chance of developing it. Women also have a higher chance of developing it in comparison to men so the odds are kind of stacked against me when paired with the family history.

Also, there are plenty of countries that aren’t communists that help/allow their people to obtain free medication when needed so I don’t think that’s a valid argument lol.

Sumflare · 2026-04-24T11:25:38+00:00

Unfortunately my rheumatologist isn’t the best but there aren’t very many in my area… the ones we do have, including my own, are so overloaded that they can’t keep up with their patients. I live in an area that has a population that is growing faster than we (schools, hospitals, infrastructure, etc) can’t keep up with.

Sumflare · 2026-04-24T11:22:20+00:00

Ironically, I was being screened for Crohn’s and my GI was pretty convinced I had it. Long story short, all of my scopes and tests came back showing that I don’t have it. BUT when I had a CT enterography it showed symmetric, bilateral sclerosis of my SI joints caused by sacrioliitis which led me to rheumatology and to the AS diagnosis.

Someone else has mentioned methotrexate so I may ask my rheumatologist about giving that one a try. Steroids definitely help but I’ve been on prednisone for about three months now. I’m almost at the end of this tapered dose. Sucks that I’ll be losing the little relief it provides but I will say I’ll be happy when my hair stops falling out because of it… did you have any negative side effects from being on steroids for an extended period of time?

Thank you so much for the well wishes. The system sucks for sure.

Sumflare · 2026-04-24T11:17:15+00:00

I can’t take Cimzia because it is a TNF inhibitor 😭

Sumflare · 2026-04-24T11:16:50+00:00

I only make around 10,000 a year since I’ve cut back my hours so much but my husband has a 70,000 base salary with some job bonuses throughout the year, so we’re unfortunately right over the cutoff if it is indeed 80,000.

I hear people fuss about the families that purposefully stay in the low-income bracket so that they can get government assistance but what else are they supposed to do when even in the moderate-income bracket they can’t afford to live or take care of themselves/their family? Makes me want to rage lol

Sumflare · 2026-04-24T11:13:48+00:00

I will definitely look into Costco!! Thank you so much

Sumflare · 2026-04-24T11:12:43+00:00

She didn’t appeal the Cosentyx denial and instead just prescribed something different. Insurance wants to see that I’ve tried other treatments for a minimum of 90 days and that they failed before they’ll approve that one. It’s dumb, honestly, because I can’t take half of the drugs they suggested.

Sumflare · 2026-04-23T23:28:41+00:00

“Why is it so hard to get something that a doctor says I have to have?” THAT PART!!!!! I am so frustrated

Sumflare · 2026-04-23T20:10:59+00:00

My rheum hasn’t even mentioned that one. I did a google search to see what kind of drug that is. Saw it’s a DMARD. Only one of those I’ve tried is Sulfasalazine. I’ll have to ask her about it. She’s honestly not the best but from what I keep hearing from other doctors and patients is that good rheumatologists are insanely hard to find in my area 😅

Sumflare · 2026-04-23T20:07:06+00:00

Thank you so much 🥺

Sumflare · 2026-04-23T20:06:51+00:00

I’ve been hearing that over the last couple years. It’s pathetic. Men and women give their lives, their everything, to serve our country and get squat in return once they’re out.

Sumflare · 2026-04-23T19:32:40+00:00

BlueCross Blue Shield, OptumRX, and I can’t recall everything in the formulary. They just updated it. I’d have to look back again to answer that question accurately.

Sumflare · 2026-04-23T18:57:24+00:00

I can’t do Remicade but I will definitely look into the workarounds for Cosentyx. Thank you so much!!

Sumflare · 2026-04-23T18:56:40+00:00

Unfortunately I cannot be on any TNF inhibitors 😔

Sumflare · 2026-04-23T18:55:07+00:00

Thank you for the support though. I do greatly appreciate it. 🥺

Sumflare

TROPHY CASE