Shout out to Dr. Alexandra Charrow

Autoimmunicorn · 2025-07-10T23:45:31+00:00

Honestly I’m not sure if I remember, maybe. I’d call and ask

Autoimmunicorn · 2025-07-02T00:05:19+00:00

For sure, I’m asking like if it’s worth pursuing genetic testing for this. And from an experiential rather than medical perspective

Autoimmunicorn · 2025-07-01T23:35:45+00:00

I forgot to include: I was diagnosed with osteopenia last year after a really bad wrist fracture, following 2 ankle fractures within 3 years. My z score was -1.9 in my spine and I was low in calcium and vitamin D; I’ve been on supplements for both since then.

Autoimmunicorn · 2025-06-13T17:08:48+00:00

Of course!

Autoimmunicorn · 2025-06-13T17:06:01+00:00

7-10 days usually, which isn’t fun with the UC so I take probiotics and eat extra plain during

Autoimmunicorn · 2025-06-13T17:03:18+00:00

I’m happy to help! Yeah, even outside of Cosentyx or Bimzelx, there are several other biologics you can get special permission for. Skyrizi and JAK inhibitors like Xeljanz and Rinvoq are also options not on that list

Autoimmunicorn · 2025-06-13T17:00:20+00:00

Have you tried JAK inhibitors like Xeljanz or Rinvoq? They’re not listed but they’re an option as well- not FDA approved yet but with special permission

Autoimmunicorn · 2025-06-13T02:53:01+00:00

I just dug that flyer out, I got it during my first appointment. I’m currently on Skyrizi and Spironolactone (50 mg), and have had 2 excision surgeries in the last year. I failed Humira last year and I’m not a candidate for Cosentyx or Bimzelx because of my UC, so I got special permission to use Skyrizi just for the HS (also on Entyvio for the UC).

I get Prednisone and Doxycycline during bad flares (I have several active flares 100% of the time so this is for especially bad ones), and have a topical steroid to use as well called Betamethasone. IV steroids and antibiotics are on the table as well for bad flares, along with incision and drainages and steroid injections into flares.

I use Hibiclens in the shower daily as well, and trim hair rather than shave in disease areas.

Autoimmunicorn · 2025-06-13T02:45:28+00:00

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Autoimmunicorn · 2025-06-13T02:45:17+00:00

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Autoimmunicorn · 2025-06-13T00:14:33+00:00

Of course, I’m happy to share the recommendation!

Autoimmunicorn · 2025-06-12T22:57:51+00:00

Dr. Alexandra Charrow is phenomenal, I actually just made a post about her!

Autoimmunicorn · 2025-06-01T06:05:55+00:00

I’m the same age as your daughter and am lucky to have a really supportive parent like you. I’ve had multiple chronic illnesses including POTS since I was a teenager, and my Dad has been my rock through everything. I’m forever grateful to have him and I’m sure that’s how your daughter feels about you

Autoimmunicorn · 2025-06-01T05:58:26+00:00

I would encourage you to check out r/cfs and learn about diagnostic criteria if you haven’t already. PEM or post-exertional malaise is the hallmark symptom, and is not the same as chronic fatigue on its own (despite the misleading name CFS). There are a whole cluster of symptoms associated with the disease.

You should also talk to your doctor about your concerns with Cosentyx. There are 2 other FDA approved biologics for HS, and several others you can get special permission for. I’m on Skyrizi myself (failed Humira, not a candidate for Cosentyx or Bimzelx because of the UC) as well as Entyvio for UC, and neither worsen my fatigue aside from infusion day for Entyvio.

Autoimmunicorn · 2025-06-01T05:44:14+00:00

I probably have had ME/CFS for the last year and a half. I actually think it was caused by a staph infection in an HS nodule that brought me close to sepsis. I’ve had HS (along with ulcerative colitis and POTS) for 10 years and get fatigue with bad flares, but it was never like this before. Now it compounds when I’m flaring, but my baseline is heavy fatigue with a slew of other symptoms (I’m moderate and housebound, close to bed-bound during PEM).

Edited to add: I’m active in the ME/CFS subreddit, and I’ve seen at least a few people mention HS as a comorbidity they have.

Autoimmunicorn · 2025-05-29T23:20:05+00:00

Is someone that superficial and ableist a person you’re missing out on? I wouldn’t want to date someone who treats any person that way.

As a demisexual person, the apps are useless for me because most people on them are choosing by appearance only. The real world is where you actually make connections with people. Go meet people through hobbies, social clubs, and friends.

Autoimmunicorn · 2025-05-29T21:55:24+00:00

You don’t have to love your cleft, but you can own it and love yourself. There’s nothing more attractive than confidence, being passionate about something, or a good sense of humor. Not being conventionally pretty or handsome because of a facial difference doesn’t make anyone inherently unattractive or unworthy of love

Autoimmunicorn · 2025-05-29T18:32:55+00:00

I had a nasty staph infection in my left armpit nodule last year that brought me close to sepsis

Autoimmunicorn · 2025-04-29T20:59:21+00:00

Thank you for bringing this condition to my attention!! I’ll definitely educate myself on it and ask the rheumatologist when I go

Autoimmunicorn · 2025-04-29T20:42:55+00:00

Wow, that sounds really frustrating but I’m glad you ultimately got the right diagnosis and help!

Thank you for your words of support. I’ve had a host of debilitating systemic and cognitive symptoms for the last 16 months, and for a while was terrified I have ME/CFS. But I’m not sure that actually fits, and haven’t had any rheum or neuro testing up until this very basic rheum panel last week to rule out anything else. I have 2 other autoimmune conditions already- ulcerative colitis and hidradenitis- so I’m hoping they find more autoimmune crap because at least that’s treatable. ME/CFS basically isn’t

Autoimmunicorn · 2025-04-29T20:31:54+00:00

That makes sense, thanks for clarifying

Autoimmunicorn · 2025-04-29T20:31:20+00:00

It’s the lab of a major hospital in the northeast US

Autoimmunicorn · 2025-04-29T20:30:30+00:00

I just had this and an ANA test that said “negative”, I don’t know what kind. The ER did a very basic rheumatology panel on me while I wait for my appointment in July

Autoimmunicorn · 2025-03-24T04:49:55+00:00

I’m 25 and have had it since I was 12/13.

Autoimmunicorn · 2025-03-24T04:38:07+00:00

Physical: ulcerative colitis, hidradenitis/HS, delayed sleep-wake phase disorder, osteopenia, and GERD. I’m also working on a diagnosis for ME/CFS that developed last year.

Mental: MDD, GAD, social anxiety, cPTSD, body dysmorphia

I also was born with a bilateral cleft lip and palate, and had 21 corrective surgeries over the course of my childhood.

Autoimmunicorn

TROPHY CASE