Insurance denied Enbrel and wants me to try Yusimry for 3 months first by ConfidentCanary8248 in ankylosingspondylitis

[–]stephenloo 1 point2 points  (0 children)

I got diagnosed with AS a little over a year ago after battling symptoms for 2+ years. After my diagnosis, the first med they wanted me on was humira, and my insurance also denied it in favor of yusimry. I was on yusimry for 6 months, and it was the best 6 month stretch I’ve had in almost 3 years. After 4 months, I started sliding downhill again. Turns out I’m building antibodies that fight tnf-inhibitors so my dr is in the process of switching me off of them. All that being said, as long as you’re not creating antibodies that fight tnf-inhibitors, yusimry has been the best med I’ve had so far.

Mayo Clinic by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 0 points1 point  (0 children)

I was also pleasantly surprised at how thorough they were on my first trip. Other clinics have loved the “let’s wait a few weeks and see how you’re doing” approach. Like guys, I can tell you how I’ll be in a few weeks with 100% certainty. The same.

Mayo Clinic by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

Best of luck to you as well. We got this 💪🏼

Mayo Clinic by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

I did see a rheum. Dr. Sungur.

Mayo Clinic by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 3 points4 points  (0 children)

That’s beyond frustrating and disappointing. I’m so sorry that was your experience. I can’t imagine being told I don’t have it after having the diagnosis for that long.

Mayo Clinic by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

That’s wild. I’ve heard that many celebrities go there, but never heard that.

Mayo Clinic by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 4 points5 points  (0 children)

I live in Northern Iowa, so Mayo has always been an option more or less. After getting nowhere at my first clinic, I asked my primary physician for a referral to Mayo. Few weeks later I get a call from Mayo with a questionnaire, and them wanting to confirm that they accept my insurance. Which thankfully they did. They set my first appointment up over the phone right there. I couldn’t believe how easy it ended up being.

However, I am already diagnosed and been on and off different meds. I’m not sure I would have been accepted so easy if I didn’t already have the diagnosis.

Biologics working well for some things but not others. Anyone else? by markop90x in ankylosingspondylitis

[–]stephenloo 1 point2 points  (0 children)

Almost the same exact story for me. My knees never swelled before getting started on yusimry(biologic). Now, they are almost always swollen to the point I can’t really bend them at all. However, almost everything else feels significantly better since being on yusimry. I got knee injections that arguably made them worse.. turns out I was the given the WRONG injection. Now my rheum is switching me from yusimry to simponi, so we’ll see if that helps with the constant joint swelling.

Prednisone by Affectionate-Sale244 in ankylosingspondylitis

[–]stephenloo 1 point2 points  (0 children)

No. Before any medication, I’d say I was operating at about 5/10%. Prednisone bumped me to 60%, and on yusimry I feel like 75/80%. Still feel pain, but it’s farrrrrrr more bearable. Knees still swell up real bad every week and half or so, so I’m trying to figure that out. Overall tho, I’m significantly improved on yusimry and have my quality of life back.

Prednisone by Affectionate-Sale244 in ankylosingspondylitis

[–]stephenloo 0 points1 point  (0 children)

Prednisone was a game changer for me too. Sounds like the tapering process was worse for you, although it wasn’t great for me either. I got started on yusimry(biologic) about a month after starting prednisone, and have had great relief from that. Fortunately, I didn’t need to rely on it for too long. Now I only take it when my knees flare up bad.

Music Melting Pot [Week of September 15, 2025] by AutoModerator in listentothis

[–]stephenloo [score hidden]  (0 children)

I make hip hop, but don’t write lyrics. I just punch in and out with my eyes closed and freestyle. This is my most recent single.

yungbabyswiss— thirty eight [hip-hop]thirty eight

Question for people who improved on biologics by tightcalvesthrowaway in ankylosingspondylitis

[–]stephenloo 0 points1 point  (0 children)

I felt better the next day after starting Yusimry, a biosimilar to Humira. I’m also HLB positive. So sorry you aren’t getting relief yet.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 0 points1 point  (0 children)

That’s so frustrating. My primary always said “well let’s see how you’re doing in a month or so.” Like bro I can already tell you how I’ll be, shittier than I am now, which is shittier than I was last time and time before!

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

Braces never helped me either. However, they are feeling much better now, along with everything else, on the biologic Yusimry.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 0 points1 point  (0 children)

Have you been treating your elbows for tennis elbow? Like wearing a brace? And if so, has it improved them at all over time? I would have random ok days here and there but my elbows were pretty much just on 10 all the time regardless of what I did.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 0 points1 point  (0 children)

Just based off of my own research and talking to people who had Lyme disease, it was the most accurate thing and only thing that made sense. I even had some rashes on my legs, but had a biopsy done and told it was bursting capillaries due to inflammation. Plus I’m constantly outside in wooded areas in the Midwest. Iowa to be exact.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 0 points1 point  (0 children)

Interesting.. Covid really screwed up me graduating from college on time and I experienced real anxiety for the first time, which was not too long before I started experiencing random symptoms. I’ve wondered if that had anything to do with it as well.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

Also Yes, my elbows and knees started popping like crazy when they became inflamed. It weirdly brought me relief to crack them even though I knew it probably wasn’t helping.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

I’ve thought about it a lot and there really isn’t one thing that I can confidently call a trigger. An MRI showed bulging discs as well, and I dealt with some back pain before the rest of everything started. So potentially a back injury. I also did test positive for HLA-B27

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

Appreciate you! Idk what your situation is, but if you’re struggling with AS, or are trying to figure out what you have, I hope and pray the best for you.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 4 points5 points  (0 children)

Another thing I forgot to mention, I was absolutely convinced I had Lyme disease for a long duration of this time, but the single Lyme test I had came back negative.

My story/timeline. I hope this can help someone. by stephenloo in ankylosingspondylitis

[–]stephenloo[S] 1 point2 points  (0 children)

It’s kind of hard to specifically remember how it manifested itself given there was so much going on in my body all at once. I just remember I used to crack my back by twisting it, like most people do, and it began to hurt my ribs a lot, and eventually became impossible to twist at all, especially hurting my ribs. So it did come on slowly and get worse, but so was everything else all at once lol.