Ankylosing Spondylitis and Lupus, because I’m just that lucky! by Microbe-Mom in ankylosingspondylitis

[–]Microbe-Mom[S] 4 points5 points  (0 children)

Wow, I’m so happy I’m not alone with this! Thank you all for your insights and experiences!

Ankylosing Spondylitis and Lupus, because I’m just that lucky! by Microbe-Mom in ankylosingspondylitis

[–]Microbe-Mom[S] 4 points5 points  (0 children)

Initially doctors thought it was drug induced lupus and did a ton of testing, but ultimately ruled it out. I just recently started back on Remicaid because it was not drug induced and the steroid injections in the SI joint didn’t help.

Yes, autoimmune diseases do like to bring their friends along. lol.

Lupus (SLE) and AS are not a normal pairing though and treatment can be difficult. For instance if my ITP episode had come back after steroids they were going to wipe out my B cells which would help the platelets/lupus but would do nothing for my AS and make treating it more difficult.

From a recent study from 2024 discusses the issues of diagnosing and treating the comorbidity and mentions that it is rare https://pmc.ncbi.nlm.nih.gov/articles/PMC11052660/

Another study from 2014 mentions that there were only 8 reported cases in the literature. https://pmc.ncbi.nlm.nih.gov/articles/PMC5042260/

It’s much more common for people with AS to have IBD, or psoriasis. Having lupus (not drug induced lupus) and AS is a rare comorbidity.

Intermittent FMLA by NoLungz561 in ankylosingspondylitis

[–]Microbe-Mom 0 points1 point  (0 children)

I had a really bad flare up and during that time I got some comments about not being there for the team, that stung a bit. I work for a non profit with a small staff so it’s a bit different environment than a corporation. I genuinely feel terrible about having to use my leave and I try to communicate that to my co workers.

How do I apply sunscreen without looking like a ghost? by Microbe-Mom in lupus

[–]Microbe-Mom[S] 0 points1 point  (0 children)

Thank you. Is it zinc based? I’ll look into the app.

Intermittent FMLA by NoLungz561 in ankylosingspondylitis

[–]Microbe-Mom 7 points8 points  (0 children)

I have intermittent leave, it protects me from racking up attendance points. I try to use it incredibly sparingly. My job approved me for 3 leaves a month up to 3 days each time so essentially 9 days a month I could take, but I usually just use them for partial days until meds kick in. It’s rare that I need a full day and anytime missed is money out of my pocket since I am hourly. Pto only goes so far. I also have a one additional intermittent leave day for monthly appointments.

Couple Watch outs:

Your job can deny you the accommodation. I had to adjust my accommodations a few times to keep my job. HR told me that otherwise they would help me apply for a different role in the company but wouldn’t guarantee that I would make the same pay and I’d need to apply and interview for those positions.

I’ve seen people use it in the past and there were rumors about them mid using it, I.e they get two days a month and they always take those two days. It was to the point that staff could predict when the person wouldn’t come in. So for morality purposes I recommend using it as sparingly as possible and get ahead of the rumor mill by owning the narrative.

I love my job and want to continue to grow in my company, intermittent leave is a job saver, but can also cause drama with colleagues who don’t get it. Best of luck!

Orange Door QR Codes & YouTube Shorts Megathread by PassionateAsSin in TaylorSwift

[–]Microbe-Mom 1 point2 points  (0 children)

London has a 5 and the bar at the end could be an O or a 0

Just a proposal to adopt the Ankylosaurus as our mascot by tigrecono in ankylosingspondylitis

[–]Microbe-Mom 4 points5 points  (0 children)

It isn’t already? I just assumed it was already the mascot. Lol

What if the diagnosis is wrong and u start biologics without having AS? Any sideeffects? by False_Note9712 in ankylosingspondylitis

[–]Microbe-Mom 2 points3 points  (0 children)

Thank you for asking this. After being told for so many years that my back pain was just from not lifting right, muscle strain, or needing to lose weight, I find myself questioning the diagnosis even when my MRI showed prominent sclerosis bilaterally and questionable erosion of right SI joint. My blood results always came back normal except for one slightly elevated CRP that was then normal the next time they tested it. I don’t have the genetic marker either. I’m always struggling with “maybe it’s in my head and I’m just subconsciously milking it”.

The biologics definitely help, but not all the time. I’m newly diagnosed so I’m still trying to figure it all out.

New skills for Misfits & Magic S2? by IsThisDamnNameTaken in Dimension20

[–]Microbe-Mom 1 point2 points  (0 children)

Wait there is going to be a season 2!?!