r/Autoimmune • • Aug 26 '25

FAQ Rules

86 Upvotes

Good morning! We’ve had several posts lately that are tiptoeing on the line of what is and is not allowed, so I wanted to take a moment to clarify one of our rules, in particular, and also add to them.

Posts with pictures of rashes and questions like, “Is this autoimmune?” break our rule on asking for diagnoses.

We are no longer allowing stand-alone labs posts, either. These also tiptoe on the line of breaking our rules, and frankly, they are very annoying for a lot of our members.

It doesn’t matter if you say, “I’m not looking for a diagnosis”, if you then proceed to fish for one. We will be enforcing this rule more strictly in the future. We, and Reddit, can get in legal trouble for this so we must be more careful so we have a subreddit to go to.


r/Autoimmune • • 9m left

Advice help with navigating?

• Upvotes

hi! tldr for context:

i saw a PCP who did my labs and i had positive ANA so i got sent to a rheumatologist who basically said (poorly paraphrasing) that he thinks based on my symptoms that i could have psoriatic arthritis. for additional context, i believe that i may be suffering from pain as a result of hypermobility and possibly hEDS but idrk because im not a doctor.
anyway so the rheumatologist gave me some prednisone to test if that helps and basically after said that i should get on hydroxycloroquine to see if it helps without running any additional tests except blood work which i had already had. i decided not to take the medication and i ended up moving states, getting a new job, etc.

THAT ALL BEING SAID, im looking for advice on next steps. should i seek out a rheumatologist in my new area first since ive had all these previous background tests or should i start with just finding a PCP or like both at the same time? my insurance does allow me to go to a specialist without a referral

thanks for any advice!!


r/Autoimmune • • 13h ago

Advice Anyone tested for myasthenia gravis (MG) while dealing with unexplained weakness, fatigue, and neurological symptoms? how do you cope in between visit without feeling defeated?

5 Upvotes

Hi everyone! I'm 31F, and I'm currently going through a difficult diagnostic process. I'm hoping to hear from anyone who has experienced something similar.

For months, I've been dealing with multiple symptoms that have significantly affected my daily life. Lately, I've become so physically exhausted and weak that I spend most of my time in bed. Sometimes even walking around the house or holding my phone feels exhausting.

Some of my symptoms include:

  • Extreme fatigue and muscle weakness, especially with activity
  • Heavy, weak-feeling legs and difficulty walking for long
  • Occasional difficulty swallowing and a lump-in-the-throat sensation
  • Feeling breathless with minimal exertion
  • Dizziness, imbalance, and lightheadedness
  • Brain fog and difficulty concentrating
  • Occasional tingling sensations
  • Rapid heart rate, sometimes while resting or sleeping
  • Chest discomfort, muscle aches, and nausea
  • Feeling physically drained even after resting

My testing and diagnoses so far:

I've had numerous ER visits, EKGs, an echocardiogram, heart monitoring, routine bloodwork, and neurological imaging.

My echocardiogram was normal, and much of my routine bloodwork has been reassuring. My recent heart monitor recorded my heart rate reaching 189 bpm.

My cardiologist suspects inappropriate sinus tachycardia (IST), and POTS/dysautonomia has also been discussed. I'm currently taking ivabradine.

I've also had brain MRI and vascular imaging that reportedly came back normal.

I'm currently undergoing further neurological evaluation, and bloodwork has been ordered to investigate possible myasthenia gravis and other causes of my symptoms. I have not been diagnosed with MG.

The hardest part is the uncertainty between appointments.

I genuinely feel unwell almost every day. Sometimes I feel too weak to do basic activities, and I've started relying on a wheelchair for longer outings because I get exhausted so easily.

I also struggle with health anxiety, which makes it difficult to know when a symptom is something serious or when my nervous system is amplifying how I'm feeling.

I've visited the ER multiple times, and I'm often told my immediate testing looks okay and to follow up with specialists.

It's frustrating because I don't want to keep going to the ER unnecessarily, but I'm also scared of ignoring something important, especially when experiencing weakness, breathing discomfort, or swallowing symptoms.

My questions are:

  1. Did anyone with MG initially experience generalized weakness or fatigue before receiving a diagnosis?
  2. Did your symptoms fluctuate throughout the day or worsen with activity?
  3. Were your routine bloodwork, MRIs, and cardiac tests normal before further testing identified the problem?
  4. Did anyone experience POTS, IST, or dysautonomia alongside an autoimmune condition?
  5. How did you manage your symptoms while waiting for diagnostic testing?
  6. How did you work with your doctors to decide when symptoms required urgent evaluation versus monitoring at home?

I'm not looking for anyone to diagnose me. I'd just love to hear your experiences and how you handled the uncertainty.

I'm mentally and physically exhausted and just want to feel like myself again.


r/Autoimmune • • 10h ago

Venting Hi Y’all!

2 Upvotes

I was recently diagnosed with complications of Psoriasis.

Specifically, ocular. My left eye has been extremely red, sensitive to ALL light and worst of all? Chronic uveitis.

Been 2 years now and finally found the cause last month. I’ve been kind of reeling from it. 100% expecting this to be resolved with either surgery or medication.

None of that is going to work. Only management to keep me from losing my eyeball. 👁️ (there should be other colored eyes.)

Anyone else diagnosed with something like this? I wasn’t even given a name for it lol just a general “uveitis” diagnosis 😭😭😩😳👁️👄👁️


r/Autoimmune • • 6h ago

Advice Autoimmune symptoms, high ANA, but no diagnosis. Worsening pain. Please share your thoughts!

1 Upvotes

Hi, I’m 34F and have always been a very active person all my life. In the last two years, I felt my energy levels decreasing a lot but I just thought I was working too much. This year, I started getting knee pain and stiffness which I thought was because of the gym. A few months later, other joints such as my other knee, my elbow started getting affected. I also felt tremors at times, especially after using my arm for something simple like straightening my hair. Have had terrible hair loss too. Random swollen face on days, sometimes swollen legs and feet. Plus lots of stomach issues. Went to a consultant. She got extensive testing done based on my symptoms. Turns out I have anemia which I’m getting infusions for. But my ANA is also high. It came out 1:320 homogenous, and I just repeated it with another lab to rule out a mistake and the new (better) lab gave 1:640 homogenous. My consultant is great but the rheum dismissed me with possible fibromyalgia. My pain just isn’t settling and recently my back has also started hurting. I have days when I feel better and then I crash again. I no longer work full time either. All my other tests, anti dsdna, ENA equinox panel, liver, kidneys are clear. Heart function is perfect but they found a minor mitral valve leak and a hockey stick appearance of mitral valve. The cardiologist told me it’s nothing to worry about. At this point, I don’t know what to do. Also, I’ve always had dry eyes but now I have a very dry mouth too. Has anyone else been in a similar situation? And how did you proceed with it? Thanks!


r/Autoimmune • • 4h ago

General Questions Did anyone else’s rheumatologist tell them this?

0 Upvotes

Explanation first Bro I’ve been feeling like I’ve been dying for a while and it just keeps getting worse I have like 5 paragraphs of symptoms but I’m most worried about urinary stuff I have been experiencing uti like pain and discomfort for a while and I went to the hospital 3 times all bacteria culture came back negative so the doctor at the hospital told me it’s internal/lupus cystitis and I went to my rheumatologist hoping to get some help this was my first appointment I had to drive 1 and half hours to drive there and bro told me I have to go see 3 more specialist till I can see him again like bro I think I’m gonna pass (only the rheumatologist can prescribe it and also I have to consider so many other risks I just found out if u have (hsv/herpes) the steroids can compromise ur immune system and it can spread to ur brain) I have to wait so long to get predisone or another steroid I really gotta see a urologist, a optometrist to test me for dry eyes for strogens and a dermatologist to see if my 5 skin conditions have anything to do with my auto antibodies that came back positive I have positive ANA and Anti-RNP my doctor diagnosed me with SLE and I have to wait 6 more months to see the rheumatologist again like ur joking I don’t even know if I’m gonna live that long I’ve lived with undiagnosed lupus for like 4 years and I sleep 12 hours like every day because of the intense fatigue and pain no the emergency not gonna do anything just wondering if anyone else’s rheumatologist so booked and u gotta wait 6 months to see him again


r/Autoimmune • • 20h ago

Venting Why can’t they figure out why my blood counts are dropping? Feeling frustrated, confused, and alone.

8 Upvotes

Hi everybody. 29F here. I’ve been chronically ill my whole life and was also diagnosed with psoriatic arthritis in my early 20’s. Stupidly, I thought that surely lightning wouldn’t strike a third time, but alas- I might as well be a kite in a thunderstorm.

Over the last year and a half, I’ve lost 150lbs and started working out 2-3x weekly. At first Pilates was difficult but manageable, then it started to get easier the more I trained- until it didn’t. It started to feel harder again. I especially struggled with lifting my arms overhead and hip exercises. I asked my physical therapist, who told me my hips are still very weak- something that feels like it shouldn’t make sense considering how I’ve been training for a year now.

My PCP flagged that my wbc was a little bit low around July, and we assumed I was recovering from a cold or something. Then, in August, repeated bloodwork showed a sudden sharp drop in my WBC and ANC- 2.2 and 1.0 respectively. She sent an urgent referral to a hematologist and rheumatologist. Upon reviewing my records, it appears that my WBC began a slow but steady decline around summer 2025. It never recovered or went up, just slid down. My WBC had previously been at 5 for years, so this is a huge decrease for me.

Then, my most recent blood tests showed low RBC, hemoglobin, and hematocrit- and my platelets, although still technically normal, have dropped by more than 30% in a month.

I started to feel awful all the time. I feel weaker- when I try to do Pilates, my legs would shake so bad by the end of class that I can’t even finish the class out. I became massively fatigued, but sleep has become harder for me, too. My whole body started to hurt, even the hairs on my head hurt when I wear a slouchy beanie for more than an hour. My feet swelled up at one point, becoming noticeably puffy, but have since returned to normal. My periodontal disease became active again, too, and my migraines have started more frequently.

They’ve run almost every test imaginable, and the only positives have been weird ones. First off- I’ve had a positive ANA my whole life. It’s always been either 1:80 speckled or 1:160 speckled. Now, I get this result- 1:160 nuclear dots pattern, which is apparently typically associated with Primary Biliary Cholangitis- a condition that wouldn’t even cause my counts to drop, which is what we were investigating in the first place.

My doctors told me they had no idea what that result meant. Including my rheumatologist. More than one said “oh they must have meant speckled” and I had to explain that it was an entirely separate ANA pattern. My rheumatologist straight up refused to do antibody testing for the antibodies associated with this pattern, saying “that’s not my specialty.” My hematologist ran some blood tests and did a bone marrow biopsy, all of which came back negative, so she said “maybe you’re just like this now.” Like, fuckin excuse me? I’m just like this now???? BUT WHY???? She told me there’s nothing she can do and dismissed me with no answers.

Luckily I have a stellar PCP who has taken it upon herself to run all of the tests the other doctors should have but didn’t.

Positive tests:
ANA 1:180 nuclear dots pattern
131 Fecal Calprotectin
1:40 ASMA
Skin biopsy confirmed psoriasis
Elevated MCV
Low WBC, Neutrophils, Hematocrit, Hemoglobin, and RBC.

Negative/normal results:
Lupus panel
Sjogren’s panel
Scleroderma panel
Salivary gland biopsy
Bone marrow biopsy
ESR and CRP are low, no inflammation
AMA
All liver enzymes are normal
Kidneys are working great
Muscle enzymes normal and unchanged
DAT/Coombs
LDH
Haptoglobin
All nutritional studies (b12, iron, protein, etc.)
Colonoscopy/endoscopy with biopsies
Normal Reticulocyte count

Symptoms:
Body aches
Joint pain and stiffness
Dry eyes and mouth
Fatigue
Muscle weakness
Nausea
Loss of appetite
Symmetric feet swelling
Migraines
Exercise intolerance
Bloating

And today I finally got tested for the two antibodies typically associated with the nuclear dots pattern- NXP-2 and SP-100. Im scared. I just want to know what’s wrong with me so we can treat something. I feel like I just keep getting sicker and my quality of life is already poor, I don’t want it to get even worse. The conditions associated with that ANA result are very serious but none of my doctors seem overly concerned about it. It’s obvious something is wrong but the only positives point towards a liver condition I don’t meet the diagnostic criteria for and that wouldn’t cause the blood count abnormalities I have.

I have an appointment with a new rheumatologist in Nov 5 and that’s the only thing giving me hope right now, but I’ve been dismissed by so many who were supposed to help me that I’m scared it will just happen again and I’ll be left waiting until I’m in a medical crisis for anybody to figure out what’s wrong with me.

Can anybody else relate to this? What did you end up diagnosed with, what tests did they run? I just don’t want to be in pain anymore. I’m scared the future I wanted- to be a mother- is slipping further from my grasp because I can’t get pregnant if my health is this poor and I have no answers.

Anyway, thanks for reading. Stay strong everyone.


r/Autoimmune • • 10h ago

Advice Should I continue on the journey?

0 Upvotes

Hello everyone! I am honestly just tired at this point of my health journey and I’m not sure if I should continue pushing to get more test or leave it to the unknown. I’m 28 F and last year I had initially seeked answers to why am I so fatigued constantly. I had my thyroid checked and a sleep study done with normal results. I also did have issues with my joints hurting and stiffness but it didn’t seem to alert my dr at the time as it was occasional along with few GI issues I kept sweeping under the rug. Then I got a kidney infection and went into early sepsis. Since then I’ve been chronically fatigued. I feel like all those once in a while issues I listed previously are more like every week or daily. I’ve since had a constantly high CRP for about a year now, recently found my IGa is high and had my ANA checked twice now the first one was positive with a 1.4 titer nuclear speckled, but now after checking again is negative. I seen a Rheumatologist earlier this year who thought my pain was result of my body still recovering from my infection as my autoimmune panel came back negative. I’ve been working with a GI provider as I’ve had on onslaught of abdominal pain since earlier this year. A lot of my test have come back negative recently when trying to figure out if this inflammation is autoimmune, GI related or just something I will have to live with. It also doesn’t help that some important test to see if inflammation is in my gut from a stool study got lost at the lab. So I had to do a CT scan this week just to find nothing. Honestly, I’m just so tired of being afraid to eat and to push my body into activities as I regret it for several days after. I keep asking am I just worried for nothing, and want to just drop it at this point. But I did drop my health problems previously and went into sepsis so… I don’t know. Just hoping to hear some outside perspectives and hear about others stories on their health journey.


r/Autoimmune • • 11h ago

Venting Been on HCQ for a year, and my labs are all normal for the first time in 20+ years, but...

1 Upvotes

I still feel awful. Mostly fatigue, body/muscle aches (seriously, even my hair hurts), brain fog, inability to sleep. Along with UCTD/leaning towards lupus, I also have fibromyalgia. My rheum says fatigue is the hardest symptom to treat. I'm on Adderall now so I'm able to function enough that I can imitate a normal human woman at work, but I'm still just absolutely wiped every single day. My brain is so slow, I'm constantly forgetting important things and I can't even remember simple words a lot of the time. I feel bad for my boyfriend and Mom and friends because after working an 8 hour day I'm literally incapable of doing anything but rot on the couch. I can't even stay awake to watch a show or movie. But then when it's time to go to bed I can't fall asleep to save my life. And when I do sleep, I'm usually awake within 1 to 2 hours. A lot of the time it's from the pain, but sometimes it seems to be for no reason. I'm averaging 4-5 hours of broken up sleep a night. I don't know the point of posting, I think I'm just getting very burned out from never feeling well and I'm absolutely burned out because I feel like I'm always at the doctor's, and I'm taking so many meds to treat my different health issues. I'm just done. I have an appointment on Friday to check basic things like iron/ferritin, thyroid, vitamin d, etc. I'm hoping there is a simple answer. Thank you for allowing me a space to rant.


r/Autoimmune • • 13h ago

Advice Rheumatologist that specializes in treating Dermatomyositis?

1 Upvotes

Does anyone have a recommendation of a rheumatologist that is an expert/specializes in treating dermatomyositis in the DMV area -

I know some trek to UPenn or JH, but was hoping there are great doctors in the area.

Thank you in advance!


r/Autoimmune • • 19h ago

General Questions Lymphocytic hypophysitis

2 Upvotes

Wondering if anyone here has been diagnosed with lymphocytic hypophysitis?

I was diagnosed in 2013, two months after giving birth. I’d begun losing my peripheral vision and was shocked to discover it was due to what doctors thought at the time was a pituitary adenoma. I had surgery on my pituitary which restored my vision, but only after pathology came back did we learn the root cause was autoimmune lymphocytic hypophysitis, not an adenoma. I was so scared I’d have to replace a whole host of hormones after having my pituitary carved up like a Christmas ham, but I got lucky and thus far have only required levothyroxine supplementation.

I’d love to hear anyone else’s experience, particularly in regards to whether you ever experienced recurrence after successfully concluding treatment? I was under the impression that the surgery would be the end of it (as long as I never became pregnant again) but I’m starting to wonder if I’m experiencing a recurrence and am dreading going through the whole ordeal again (though I guess steroids are the first-line defense so hopefully no surgery again). Anyway, would love to find some community, and am interested to hear your story!


r/Autoimmune • • 1d ago

Advice My relationship is on the brink of collapse.

16 Upvotes

I started having major autoimmune issues a little over a year ago, but they were somewhat manageable. Then in January of this year, my symptoms became chronic and debilitating:
- nerve pain in all extremities
- joint pain in both hands, wrists, elbows, feet, ankles, and knees
- fatigue
- muscle fatigue
- brain fog
- spasticity in hands, feet, and legs
- weakness
- burning and tingling sensations in extremities
- extreme cramps and pain in arches of feet that left me immobile for most days
- joint stiffness

……

All of which has left me unable to work and do pretty much anything outside of my house for the last 10 months... Which, in turn, has made/makes me feel like a burden, useless/worthless, a mooch bc I’m not contributing financially in my relationship.. I feel like I’ve lost my identity and purpose.. my quality of life has gone into the gutter and my mental health has deteriorated bc of it.
On the rare occasion I do socialize, I have nothing to talk about bc my life’s been nothing but 24/7 pain and dr appts… and who wants to hear about that? Plus, it just makes me feel like a Debbie Downer.

Bc of all of the above, the dynamic of my relationship with my boyfriend has consequently morphed into a patient/caregiver one- no intimacy of any kind, no joking, no affection, i feel his attraction to me has diminished, no emotional connection, no quality time, and only conversations that consist of him asking about my pain levels/symptoms and drs appts.

Over the past several months, I’ve expressed my concerns about him developing resentment towards me due to me not working, not doing my fair share around the house, being needy and emotional, and having to back out of plans last minute leaving him to have to go solo and feel guilty for going.

He consistently reassured me that that wouldn’t happen and we’d get through it and be stronger bc of it all. Welp, a few months ago it happened. Everything he’d been bottling up came to the surface during an argument.

Since then, any interaction I have with him is laden with contempt- even when he looks at me I can see it in his eyes- and it’s left me devastated. I don’t know what to do. I hate this undiagnosed monster that’s hijacked my body and is dismantling my life.

Any thoughts, insights, resources, or advice would be greatly appreciated. TIA


r/Autoimmune • • 22h ago

General Questions Migraines

2 Upvotes

Hi all! I was recently diagnosed with migraines but may have reason to believe it is a sign of something autoimmune. I just wanted to ask how many of you ended up diagnosed with migraines being the first really noticeable symptom. I know migraines and autoimmune disorders are frequently comorbid with one another but since the migraines came first, I’m just curious on y’all’s experiences. Thank you!


r/Autoimmune • • 1d ago

Advice how do you do it early on

5 Upvotes

i got blood test results a week ago. possible lupus or scleroderma. i was referred to a rheumatologist but was told that could take at least a month and probably longer.

I’m in my early 20s, I’m an artist, i was just starting to plan making a career out of it. the pain is worst in my hands/wrists. I’m really at a loss for what to do, i’ve been inconsolable for weeks. i am more immensely terrified by this than ive ever been. i know it’s too early to say this but i feel like my life has been ruined and i don’t know what to do about it.

my question is for people who have been diagnosed: how did you handle the waiting period to be diagnosed and the uncertainty of having no idea what the rest of your life will look like. thank you.


r/Autoimmune • • 18h ago

General Questions Tracking Flares

1 Upvotes

How do you all track flares and is it effective? Like have you been able to pinpoint triggers?


r/Autoimmune • • 1d ago

Advice Pemphigus

2 Upvotes

I have been through a stressful time. My rheumatologist prescribed plaquenil for inflammatory arthritis disease and I’m also under the care of a dermatologist. I got a flat, not raised area on my checks and nose 5 days after starting it. The biopsy revealed Pemphigus and the now lesions are worse every day, as the disease progresses. I stopped plaquenil per my rheum and derm recommendations.
Here’s my question finally… has anyone had any luck with rinvoq for Pemphigus with a steroid dose pack, antibiotics to treat the infected sores and a steroid taper course not working? I’m in so much pain and discomfort and I’m just wanting advice or suggestions anyone has. I have great doctors and nurses who listen and advocate, I’m just sleep deprived and miserable and would love any suggestions. I just started rinvoq yesterday and I know it takes time if it will work at all.
Thank you for reading 🤍


r/Autoimmune • • 23h ago

Medication Questions Would you take Plaquenil before your first FET for elevated Th1:Th2 cytokines, but no diagnosed autoimmune disease?

0 Upvotes

I’m 32 and preparing for my first FET with a euploid embryo after a previous blighted ovum. My fertility doctor recently recommended Plaquenil due to abnormal reproductive immunology results.

My concerning results:

* ANA positive at 1:80
* IL-2 significantly elevated (420.8; normal 5.7–31.2)
* 3 of 4 Th1:Th2 cytokine ratios elevated
* Low IL-4 and IL-10
* Slightly elevated CD3 T cells and low CD19 B cells

My NK-cell activity, lupus testing, and antiphospholipid antibodies were all normal/negative. I have no diagnosed systemic autoimmune disease, although Hashimoto’s runs in my family.

My dilemma: My doctor recommends Plaquenil to help regulate my immune system before our November 23 transfer. I’ve read that it can improve Th1:Th2 balance, but evidence that it improves IVF success seems limited, especially for someone who hasn’t had repeated implantation failures.

My husband doesn’t think I should take an unnecessary medication, but I’m worried I’ll regret not trying it if the transfer fails.

Has anyone taken Plaquenil for elevated cytokines without a diagnosed autoimmune disease? What dose did you take, when did you start, and did your transfer succeed?


r/Autoimmune • • 1d ago

General Questions Autoimmune Ataxia, what were your earliest signs?

3 Upvotes

Getting a spinal tap soon to confirm presence of anti-GAD 65 antibodies in my csf. I already am very positive in my blood test.

Anyway I got some symptoms but the one that is making me feel most concerned are my hands being weird. This is the newest one. They curled up during the finger tapping test and were not steady at all. Now my entire arm is sore from what I assume are contractions of some sort.

Dr feels confident but waiting on confirmation. What were your early symptoms and/or progression?


r/Autoimmune • • 1d ago

Advice Starting methotrexate mid-semester. How did it affect your focus and studying?

5 Upvotes

Hi everyone,

I'm about to start methotrexate, beginning at 10 mg and going up to 15 mg weekly. The timing isn't great: I'm in the middle of my studies and also working, so my days are already pretty full.

What I'm most worried about is the fatigue. I've read a lot about the "methotrexate hangover," and my work and studies depend heavily on reading, concentrating, and absorbing new material.

For those of you who've been on it, especially while studying or doing cognitively demanding work:

Were you able to concentrate on reading and studying while on MTX?

Did it get better after the first few weeks or months?

Did anything help? Any advice?

I'd really appreciate hearing your experiences, good or bad. Thanks!


r/Autoimmune • • 1d ago

General Questions Biggest challenge? How many don’t have diagnosis?

3 Upvotes

Hey all, I’m curious of those with an autoimmune condition- how many of you have not been able to get a diagnosis?

Or what if there was a way to help you further get a clearer picture as to what’s causing your symptoms?

I’m just curious to understand what that proportion looks like.


r/Autoimmune • • 1d ago

General Questions Anyone else experience a red nose like this with their condition?

1 Upvotes

I have a wide range of symptoms, many of which seem autoimmune-related. So far, I've been diagnosed with ME/CFS, POTS, Hidradenitis Suppurativa, Urticaria, and Raynaud Syndrome.

However, I still haven't found an explanation for my red nose. Possible causes I've considered include Rosacea, Lupus, Erythromelalgia, and Raynaud, but I don't know how to find it Out (nothing fits perfect) and my ANA blood tests have been normal. The facial flushing episodes started in autumn 2025, although I had a break from them between June and September 2026 (cause of the warmer temperature maybe).

Here's what happens: During these episodes, my entire face feels extremely hot. Sometimes my whole body feels hot as well, even though the redness is limited to my face. Occasionally, I also experience tingling in my nose, but no burning sensation. Interestingly, the redness is usually confined to my nose, with a very distinct border. Sometimes it also affects my upper cheeks. Quite often (though not always), my nose has been ice-cold beforehand, sometimes even bluish. This can be accompanied by a strong sensation of pressure around my nose and sinuses. Possible triggers I've noticed include heat, cold, stress or strong emotions, and infections. I've even experienced an episode during a bout of chills while having a gastrointestinal infection. When these episodes occur, they often happen several times a day, sometimes over extended periods. They tend to be more frequent in the afternoon and evening.

Has anyone experienced anything similar and managed to find an explanation or an effective treatment? I'd be really interested to hear about your experiences.

(normal nose)

r/Autoimmune • • 1d ago

Advice How to help myself

3 Upvotes

while awaiting my first appointment ….
After several years of always coming down with a secondary illness after the first one (COVID-bronchitis, flu- pneumonia) and then the last year and a half of repeated shingles out breaks (got the vaccination which has made my last 2 milder), my primary recommended bloodwork. This indicated a possible autoimmune condition. I have been referred to a rheumatologist but the appointment is not until April! In the meantime, what can I do to maximize my health and possibly improve how I am feeling (fatigue, brain fog, joint pain).
Thank you in advance for your advice and suggestions.


r/Autoimmune • • 1d ago

General Questions Don’t know what is going on?

1 Upvotes

Hi f25, I was wondering if anyone has had similar symptoms to me. I haven’t been diagnosed and im not looking for a diagnosis from here. I’m just looking into possibilities at the moment as I can’t get a recommendation to see a rheumatologist at the moment since I don’t have ulcers

My symptoms started in early June, around the time I developed what I believe was my first cold sore on my lip. Since then, I’ve been experiencing a variety of symptoms that seem to come and go.

Lips and mouth: Random burning and itching throughout the day, sometimes with red patches on my lips that can last anywhere from a few hours to a day or so. No blisters.
Eyes and nose: Burning and itching in my eyes and eyeballs. And itchy nostrils
Hands: Burning, itching, and occasional aching in my palms and fingers.
Muscle aches: Occasional aching in my thighs.
Genital area: Itching that can last for weeks, go away, and then come back again.
Rashes: Random rashes on my neck and chest, and I’ve also had one on the side of my face.

I had bloodwork done in September, and everything came back negative, including my ANA and that my inflammatory markers were normal. The only abnormalities were low vitamin D and high blood pressure.

Does anyone else have symptoms similar to this?


r/Autoimmune • • 2d ago

Advice FT819, an off-the-shelf CAR-T for scleroderma, is recruiting (Phase 1)

6 Upvotes

Quick disclaimer first: I'm not involved with Fate Therapeutics or this trial in any way. I'm a patient who's been reading up on CAR-T and thought this was worth sharing.

What it is

FT819 is a CD19 CAR-T therapy, but unlike most CAR-T it isn't made from your own cells. It's grown from engineered stem cells (iPSCs), so it's "off-the-shelf" and doesn't need weeks of manufacturing per patient. They use CRISPR to insert the CAR into the T-cell receptor gene, which also switches off that receptor. That's meant to make every cell uniform and lower the risk of graft-versus-host disease.

The other big difference is conditioning. Most CAR-T needs fairly heavy chemo beforehand. FT819 is being tested with lighter regimens, and in some patients none at all. Several patients have been treated as outpatients or sent home within a day.

Results so far (early, small numbers)

Five SSc patients enrolled in the Phase 1 basket trial. All four who reached the 3-month mark hit at least an rCRISS-25 response, and one reached rCRISS-100.

Skin scores (mRSS) improved on average in all of them at 3 months.

In lupus, a single dose with no chemo conditioning produced responses in 3 of 3 patients.

No CRS, neurotoxicity or GvHD was reported in the SSc group.

Caveats: these are company-presented conference data, tiny numbers and short follow-up. Not peer reviewed yet.

The trial

NCT06308978, "A Phase 1 Study of FT819 in B-cell Mediated Autoimmune Disease"

Recruiting. Covers SSc, lupus, myositis and ANCA vasculitis

Ages 12 to 70

For moderate-to-severe active disease that hasn't responded to prior treatments (one listing says at least two)

About 18 sites across the US, UK and EU

Contact: [clinicaltrials@fatetherapeutics.com](mailto:clinicaltrials@fatetherapeutics.com) or 858-875-1800

Link: https://clinicaltrials.gov/study/NCT06308978

Talk to your rheumatologist before reaching out. Hope this helps someone.


r/Autoimmune • • 1d ago

Medication Questions Anyone switched from Imraldi to Yuflyma biosimilar?

1 Upvotes

I recently got switched and I've not been feeling too great since. I am just wondering what others experiences are?

I have crohn's and ankylosing spondilytis. I've been feeling much stiffer than usual and also been more constipated, which is a kind of gastrointestinal flare for me.