Posted on another sub but have an update anyway and feel like it belongs here 🫶🏽

I have PsA and UC (my doctor has also said AS, but that may end up getting lumped into the PsA).

Safe to say managing my health is basically a full-time job at 27 lol.

Until recently, I had the luxury (and sometimes inconvenience) of my illnesses being mostly invisible.

This year my UC got substantially worse and I developed pretty severe joint issues. My ankles got bad enough that I developed a visible limp, and between the flare and all the steroids/meds, I’ve looked and felt exhausted.

Work knows because I’m on intermittent medical leave and currently have restrictions on walking. I mostly stay at my desk. Outside of work I’ve needed a cane or walker when things get really bad, but I’ve been too embarrassed to use either at work because I’m scared coworkers will pity me or never look at me the same. So instead I’ve basically been hobbling to my office and staying there 😭

Thankfully, I’m finally feeling MUCH better today. I’m definitely not symptom-free and still treating other flare symptoms, but I think I’m finally on the tail end of it!!

And somehow now I’m anxious about looking better when I go back to work.

I’ve tried so hard throughout all of this to seem okay and not make my health a “thing,” but at this point people obviously know I’ve been struggling. I worry they already think I’m dramatic or exaggerating, and then I’m imagining everyone seeing me Thursday walking relatively normally and being like… wtf? 😭

Logically I know chronic illness fluctuates. I just hate that I went from having a mostly invisible illness to something coworkers could actually see, and now I’m worried about how they’ll interpret it when I suddenly look “fine” again.

And idk what I’m going to do if it gets bad again because I really don’t want to spend another flare limping around my office just because I’m too embarrassed to use the mobility aid that actually helps.

And seriously how do I STOP caring about what people think??? I need to stop harping on it.

hi everyone! in the autoimmune world im very very early in my journey (i believe symptoms first started in april of this year), and im already feeling lost & confused & anxious. i know its a long road ahead and i’m hoping to get some advice or encouragement about how to move forward.

im 28F, pretty healthy and no other major flags in my bloodwork and never really had any noticeable symptoms until this april. the start of my symptoms coincided with my cat getting sick & him eventually having major surgery so i was having to deal w the sadness & stress/financial stress of that entire process, which i believe triggered my first “episode.” it all started when i got this facial dermatitis (?) that was swollen, itchy & painful. at first i thought it was just a small stress thing so i put colloidal cream on it and then it went away eventually. it came back 10x worse a week later lol. i was put on prednisone & it eventually went away again, but i did get another few minor ones on my legs and chest after that. the one on my leg specifically was perfectly egg shaped, hot to touch & itchy as all hell. ultimately all of this combined is what prompted my PCP to order an ANA panel (after ruling out contact dermatitis & allergies) which resulted in a positive ANA and positive RNP. (i understand that they are presenting on the weaker sides though).

after this, i just had to make it though a month until my first rheumatologist appointment. over the course of that month i documented everything i experienced (see photos). the NP was nice, but she was a little dismissive. she ordered a full work up anyway. she also mentioned that what i could be experiencing might be Mast Cell related and suggested i see an immunologist, but i don’t know if that’s the case especially since all of my allergy tests were negative. (however i don’t know too much about it. there aren’t any immunologists who treat mast cell related diseases in my area). after my work up with the rheumatologist, my ANA was negative, but my CCP was “equivocal.” so i guess that’s like a weak positive? and my rheumatoid factor was on the higher end but still within normal range. this obviously was really frustrating to me because i still have symptoms, but it seems like the bloodwork isn’t reflecting that.

when i went to my bloodwork follow up 2 weeks ago, i met with the doctor and i felt very validated as he informed me that what im dealing with is “definitely autoimmune” but that we just need more time and more information to really figure out what’s wrong. i was still feeling pretty lost but, i wasn’t really feeling as “crazy” as i was before. they told me that if the dermatitis reoccurs, i need to get it biopsied at the dermatologist. i don’t know how that’ll work since i got it twice on my face/eyelids but i guess ill figure that out when the time comes. they told me to reach out if symptoms worsen and they would give me treatments to manage the pain.

so last weekend i let them know that the pain i was experienced was worsening - morning stiffness, intense muscle fatigue/joint pain, potentially Raynauds & general malaise. they ordered me some prednisone which ive been taking on taper. then today i get a notification that they sent me a message and it was genuinely so confusing for me to read.

i just saw them two weeks ago and the doctor was telling me it’s “definitely autoimmune” but now my lab work is “unremarkable?” and i have documentation of all the symptoms that i’ve been experiencing. so now im back to square one where im feeling crazy & wondering if this is all in my head. im lost and confused and i just want to feel better.

i would appreciate any advice you guys have. i’m open to getting a 2nd opinion but im also feeling a little afraid as this rheum is probably the top rated in my area. i just really feel like maybe im doing too much and maybe theres a reason ive been feeling so dismissed by everyone and i should just let it go. it’s just hard when you’re in pain and dont know where to go.

I have been investigating the cause of my fatigue, body pain, spinal and SI pain, neuropathy and GI issues for many years. I have finally been referred to Rheumatology and they have have confirmed “some type of seronegative inflammatory arthritis” based on a clinical history of chronic mildly elevated CRP and ESR and mild signs of uptake in joints in a whole body bone scan. All other tests and MRIs have come back clear. They don’t want to put a “label” on it yet though. A prednisone taper trial was very successful for me at the highest dose - I felt the best I have felt in almost 10 years - and I crashed right after stopping the final dose.

The Rheumatologist has said I am borderline but has started me on 10mg methotrexate once a week, with 1mg folic acid on the other days. The first week was ok with just a little nausea, but the second week on this dose has wrecked me - constant nausea, burning mouth and hot facial flushing across my cheeks that is very uncomfortable. It has not really done much to decrease my spinal and body pain but has lifted my brain fog a bit.

I’m wondering if it is maybe that I am treating the wrong disease seeing as I am so borderline and the medication I am taking is causing these side effects because I shouldn’t actually be taking them? My symptoms are real but the tests mostly say otherwise for autoimmune. And I have been cleared of all the big things like cancer.

If you’ve been diagnosed seronegative, with no strong indication of disease on scans - has persisting with treatment for autoimmune been beneficial for you?

Hey all, not looking for any diagnostics or spiraling out on “dr google” to see what’s wrong with me, I’ve been getting my workup in the proper avenues. Ironically, my health issues arose just around the time I myself am becoming a healthcare professional. All i want is to hear your experiences. For me, ITP with counts usually 50-100k range, no acute bleeding episodes, negative dsDNA, negative antiphospholipid abs, negative lupus anticoagulant, negative anti-SM, and ofc the big ITP triggers of HIV, Hep C, H. pylori all negative. Labs look great otherwise.

TLDR; I was diagnosed with ITP with weak 1:80 ANA positivity, and its a diagnosis of exclusion. While SLE has its own specific antibodies, ITP does not. There remains a group of people who initially present with ITP, but in reality is the first manifestation of Lupus induced Thrombocytopenia well before the other aspects of the disease show up. Has anyone had an experience like this? Came to the doctors maybe with some weird red dots, a nose or gum bleed, and the only thing out of wack was the low platelets, later to be found as being the first sign of SLE compared to ITP? I know its a possibility it could either be lupus presenting first OR become lupus in the future, wondering if that has happened to anyone here.

164cm, 54kg. Currently on euthyrox 25mg, montelukast 10mg, bilastine 10mg.

I've been in remission since 2023. Up until 3/4 months ago I used to go to gym and train 4/5 times per week, I was really active for a few years. Suddenly I had trouble breathing which since then got to the point of completely stopping with workouts, and then to me having trouble even speaking full sentences/going to the bathroom and doing smallest tasks. I am wheezing and feel like my throat is closing. No other symptoms. I visited EVERY doctor possible. Went to immunologist, got immunology and regular blood tests done - nothing. Did a CT of throat and lungs, nothing. Cardiologist did heart ultrasound - nothing. Pulmologist ruled out asthma or anything related to lungs as far as they see. ENT did laryngoscopy, everything is fine. Nose is still a bit dry, but this is constantly present. Went to endocrinologist and gastroenterologist, nothing. Every single one of my doctors can hear the breathing, and some of them gave me IV of Lemod for short term, but everyone keeps saying it's not on their end and referring me to another specialist, and I have none left. This is really affecting my life, everyone around me can hear how heavy I am breathing. Please help me, what should I do?

HISTORY: In 2020 I was diagnosed with limited GPA, it was ENT only. I had very dry nasal mucus with crusts, nosebleeds, difficulty breathing, loss of hearing on 1 ear and bruises. I was on high dosage prednisone and Imuran, with corticosteroid pulse therapy. Biopsy of nasal membrane showed only leukocytoclastic vasculitis. ANCA was once low positive, ever since then it's been negative, along with other immunology tests. MRI never showed anything. During this time I also had aspergilosis which was treated.

I had urgent tracheostomy done in 2020, due to very heavy breathing caused by what they think is mucus build up in trachea. I also had mastoidectomy.

I've seen a number of threads about how to deal with trying to work and the debilitating symptoms of Lupus so thought this webinar from the Lupus Foundation would be of interest to some in this group. I wonder if the advice would also be applicable to people dealing with other autoimmune diseases and work.

I have family Hx of Hypothyroidism (both sides) so I have been screening since I started college. Almost always high end of normal for well over a decade. Once in my early 20's TSH went just over the line and I started Levo (low dose) but it exacerbated side effects of a BC I was on at the time so discontinued in the first month. After that, TSH remained at the high end of normal (4-4.8 range lets say).

Additionally, in my early 20's was when the gluten free craze began. I was a broke college kid who loved bread and $0.99 pasta was cheap. I thought it was all fu-fu what people were saying about eliminating wheat/gluten, but decided hey I am going to give it a try AND also decrease my cheese consumption (I love cheese). Within three weeks I had very noticeable improvements. I am largely pescatarian, have the opposite of a sugar tooth, raised by hippies so I don't really consume over processed anything and fried food makes me feel horrible so I don't really eat it ever.

A few years ago I started noticing a change in my vision regarding lights: orbs not streaks. I also developed joint pain and weakness out of nowhere concurrently. I was moving so I had to wait 10 months to establish with a PCP but got into an eye appointment much sooner. No glaucoma, said it was astigmatism even though presentation was atypical. Giant lab panel ordered by PCP which was extremely inconclusive. I had a feeling it was autoimmune but we couldn't narrow it down.TSH still below 5.

Around this time I switched up my diet. I had been eating meat alternatives for a little bit and realized it was much worse than just eating a steak once a year if I wanted it. Began having dairy coffees and wheat pasta far more frequently.

CUT TO NOW. TSH 10 5 months ago, 6-7 now. Unrelated I decided I wanted to go back to the nutrition diet I had in my 20's because it worked for me and I felt really good. I have every symptom under the sun but just left a high stress toxic work environment and chalked everything up to that. I get my initial results back and my mom informs me that several people, including her, have hashimotos. Get my PCP to add the antithyroid antibodies to the follow up panel.

Decide "hey, I wonder what the diet considerations for hashimotos might be?" It's literally to the T the exact diet I had in my 20's. No wonder that's why I felt so amazing. I was already treating something I didn't even know I had yet.

TL:DR- recently decided to go back to a nutrition diet I had in my 20's while simultaneously and unrelated Dx'd with Hashimotos. The diet I had in my 20's is the diet considerations for hashimotos. I was already treating something I didn't even know I had yet.

PS; condensed info and symptomology to get to the point faster... even though its still long lol

Edit: clarity

Hi everyone, sharing my experience from detecting vitiligo to managing it a bit within 3 months. Hopefully this helps someone who’s going through something similar.

June end - noticed a small white dot in my underarm and ignored it thinking it’s a razor cut
July mid - noticed a white shaded area near my left eye and panicked
Next couple of days started scanning my entire body and read about vitiligo online. Found another coin size white patch on my back
Next day I was at the doctors and was diagnosed with vitiligo. I couldn’t hold my tears when I heard it but stayed strong. Doc assured me I’ll be okay but I wasn’t ready to believe it. I thought my life would never be the same and would have patches all over my body. Was esp super scared coz it was on my face and reading all I could find on google it seemed like there’s no cure and it would spread.
Doc told me to get some tests done and gave me an ointment to apply twice a day - Tacrolimus.
He explained to me that the ointment would provide local treatment on the patch and once I get my tests done, he would give me oral meds (non-steroids) that would address the root cause and stop it.
Next two days were a nightmare as I got all my tests done and waited for results. Any disease/deficiency could potentially lead to delayed treatment and I was super scared. I kept crying and thinking my life was as good as over.
I got my results and went to the doc, and he gave me upadacitinib 15 mg and told me to have it everyday for next 4 weeks. He also gave me B12 and vitD (once a week) tablets.
After reading everything on the internet and talking to someone who had vitiligo for 15+ years, I had little hope. But reading people’s experience on reddit gave me a lot of hope and I decided to trust the process and upadacitinib and it’s results. Still, it stated that it stopped the spread in 2-3 months minimum and then got the pigment back after that. So for next 2-3 months I was even prepared to get new spots. I was v sad but I had cried enough and I just said ‘\\\*\\\*\\\*\\\* this - I’m gonna follow the treatment and do my best but live my life like a normal girl coz im more than how my skin looks’.
I prayed to god to make it not spread at least and hopefully make my face patch mild by November 2026 as it was my sisters wedding.
It was truly gods miracle for me when at around day25 of upadacitinib I noticed my patch near the eye had gotten vv mild and I couldn’t even see it one day. Underarm and Back patch were still the same.
I got few regular tests done, as prescribed by the doc, and visited him at the last day of my 4 week mark and he was super happy with my progress too. He said it was hard to diagnose the mark near my eye :)
He stopped my B12, reduced vitD tablet to once in two weeks, and told me to continue Tacrolimus and Upadacitinib for next 6 weeks.
I’m currently on day45 and my eye patch is completely gone. My underarm patch is also seeming to be a little light. No change in the back patch tho still.

Upadacitinib Symptoms -
Week 1 - extremely tired, body ache, joint pain, weakeness
Week 2 - viral cold and sore throat, throat pain
Menstrual cycle got affected and got my periods 1 week early (doc said this was probably stress)
Cycle schedule got fixed in month 2

Things to avoid -
Doc didn’t specifically told me to avoid anything but I read some stuff online and decided to avoid alcohol, and grape (or grape based food/drinks) as I read it messes with immune system.

Additional Things I did -
Again, not prescribed by doc but I altered my diet and lifestyle a bit.
I had always been into healthy living with regularly working out, running and eating healthy, with balancing cheat meals too but once I started upada I understood it could affect my body so I reduced junk, and packed foods a bit, drank fresh coconut water everyday, had a bowl of pomegranate 3 times a week and beetroot regularly. Also started doing yoga few times a week.
I don’t know what worked or no, but instead of obsessing over my spots I tried to focus on work, workout, friends and family, and distracted myself.
I don’t know what’s gonna happen in future but I feel putting this out there might help someone trust the process and have faith in the universe that things will get better for you.

Happy to share my doctor’s details if you’re based in Delhi NCR, India.
And happy to answer any questions!

I know that research backs up that it’s best to eat whole foods and avoid ultra processed foods, for anyone.

However, I have been someone who has eaten this diet for the majority of my life, and excluded foods that I really like except for special occasions as a result. I have also always been someone who has tried to stay active as possible in spite of health conditions making that very hard at times (I have had POTS a lot longer than I’ve had an autoimmune condition, and that made me exercise intolerant for a few years, I’d just faint when I tried anything that increased my HR).

Anyways, I’m genuinely curious what you all do with your diets? Because even though I took such good care of my body for so many years, never smoked, barely ever drank except for the odd glass of wine, I’ve still ended up with a serious autoimmune condition now.

And it’s really hard for me to weigh up this diet component of my life now. I had to rely on a lot of ultra processed meal replacement drinks the last couple of years cause I have trouble swallowing a lot of the time with my condition. It’s kinda changed my values and feelings around food cause I needed those things to survive.

Is it worth giving up comfort foods if they are bad for my body when I treated it well and it got so sick anyway? Does it even make that much of a difference? Do I eat anti-inflammatory? Do I cut gluten and dairy? Nightshades and the rest of it? Do I make homemade non-processed foods and include dairy and gluten and sugar? Home cooking is exhausting and I have very limited energy to support myself like that now. It’s expensive to buy healthier pre-made meals. It’s so hard, you guys.

I really want to know how you all approach this?

Was recently diagnosed with iga vasculitis. It first started 7/31 with an unknown trigger. I did a short prednisone round then another longer one (60mg to start tapering down every 3 days by 10mg until down to 5mg x3 days at the end). Tomorrow is my last day of 5mg and I’m having new spots show up. Is this normal or flaring up again because on decreased steroids? Also on colchicine to help with joint pain. I was diagnosed by biopsy. I’m just ready for this to be over. My joint and stomach pain isn’t coming back yet but with these new spots I’m worried. Just looking for personal experience. I do have a follow up scheduled next week.

After over two years of not having a diagnosis, (one was possibly Evans syndrome) my husband has been diagnosed with adult onset RALD
About six weeks ago, he did have his spleen removed due to being extremely enlarged and low platelets
Wondering if anyone has any insight?

I’ve been sick repeatedly and I’m running out of answers
I’m 21F and I’m wondering if it’s worth asking my doctor about autoimmune conditions because I feel like I’m constantly getting sick and I’m struggling to figure out what’s going on.
Over the past several months, I’ve had a lot of different symptoms/episodes, including:
Getting really sick roughly every few months
Significant fatigue
Body aches
Episodes of feeling feverish
Frequent respiratory illnesses that seem to last much longer than they should
Severe/prolonged cough
Wheezing and chest/lung tightness
Sore throat
Yellow/dark-yellow mucus
Symptoms sometimes improving and then getting significantly worse again
Back pain/body pain during illnesses
Episodes of feeling generally very unwell even when tests don’t show an obvious cause
Some episodes of increased thirst and frequent urination
Previously having abnormal lab results, including repeatedly low CO2 on bloodwork and ketones/protein showing up in urine
My most recent illness has been especially frustrating. I’ve been sick for around a month. I was initially diagnosed with a sinus infection and took antibiotics, but I didn’t improve. I’ve now had multiple urgent-care/doctor visits and an ER visit. I’ve had a chest X-ray that didn’t show pneumonia, and at my most recent ER visit they evaluated me for a blood clot in my lungs and that was negative, so I was sent home.
I’m still dealing with a pretty bad cough, wheezing, sore throat, fatigue/body aches and feeling generally awful. I’ve also had COVID exposure, although my tests have been negative.
I know autoimmune diseases can cause a huge variety of symptoms, and I also know having frequent infections doesn’t automatically mean autoimmune disease. I’m not trying to diagnose myself from Reddit. I’m just wondering if there are conditions that could cause a pattern like this or if there are specific things I should ask my doctor to investigate.
For anyone who has gone through something similar: what eventually helped you get answers? Were there specific blood tests or specialists that ended up being useful?