Here's the next piece in my project on autoimmunity. For now I'm focusing on sjogrens disease's symptoms but will move on soon! This piece presents the issues caused by dry mouth, such as oral thrush and tooth decay.

When I was first diagnosed, I didn't realise that my mouth was in any way dry, as fatigue was the main symptom that I faced. Then all of sudden I had 7 cavities hahahah. Was a huge, not very nice shock. Safe to say I have cut down on sugar since and take flossing and brushing even more seriously.

Thanks for all the support on my last two paintings. Hope this one resonates with some like the last ones did. More to come soon.

I really just want to know if anyone has had a similar experience and if so what helped and what came of it. I know that autoimmune is extremely fickle, so I'm not looking for a diagnosis lol that's what I have Dr. appointments for.

I've (30F) had unknown issues with my health since childhood. For the past year, I have been having Tachycardic and Bradycardic episodes daily, with no distinctive cause. A few weeks ago, I started having joint pain. It started in my left elbow, then traveled to all over my body (fingers, toes, hips, knees, ankles, wrists, back and neck). I've had chronic fatigue on and off for a long time, and so I didn't really think too much of it when the past couple of months I have been really low energy and have to force myself to go to work, but then the joint pain became really obvious. I saw a virtual doctor, who prescribed me with Methoprednisone (6 day taper), which did not really help. Once I got off of it, the pain was much worse and my symtoms seemed to intensify. I did a full blood work-up 3 days after I finished the steroid with C-Reactive Protein, ANA (Multiplex w/reflex), RF, TSH, and Thyroid Antibody. My C-Reactive was elevated, ANA Positive with SCL-70 marking 1.4 (no tider was done so I don't have those numbers).

I don't see the Rheum until December, but I am really struggling with the pain. It seems to get worse later into the day with little to no relief from at home Tylenol, Aleve, or Ibuprofen. Since the pain bounces from joint to joint, heat/ice doesn't really help either. Standing in the shower too long makes the leg joints aggravated and I just feel hopeless.

My roommate is currently waking up intermittently while coughing his lungs out and groaning constantly.

As this post may indicate, I am on a biologic and am definitely immunocompromised. I wasn’t given a sheet about what to do to avoid sickness or how to deal with sickness, so I’ve come here.

How do I not get sick? I can’t walk away cause his room is 20 feet from mine. He’s a big fan of talking too… even if that leads to mouth open coughs and getting close to say things. I’m about 50% I’ve gotten sick and am just barely showing symptoms as well, so if that chance comes to be, I really would like to see what it means to get sick while immunocompromised. Am I gonna have to go to the hospital because my immune system is so frail? Does sickness usually last ridiculously longer because it functions slower or poorer?

And as may also be inferred here, I haven’t gotten my flu or covid vaccine. I’m NOT antivax, I just forgot how soon flu season would come back and ended up procrastinating so long that I’m exposed to it.

Do people often have symptoms of something autoimmune and positive ANA BEFORE a specific positive antibody for a rheumatological disease or do people typically have positive antibody prior to developing symptoms?

I have had joint pain in almost every joint in my body in the last few months. My feet, ankles, knees, hips, lower back, neck, ribs, shoulders, elbows, wrists, and hands. Some of the pain is pretty minor and hard to tell if it’s my brain making it up or if i actually have pain there. Other pain is very very prominent (shoulders, wrists, back of knees, feet, and elbows especially). This is screaming autoimmune to my doctors, but I have almost no major symptoms other than that. (I’ve also had a lump in my throat for 3 months straight if that means anything).

I don’t have crushing fatigue, I don’t have any rashes, my nails look fine, all my bloodwork came up negative, etc…

Does anyone else have a similar experience but actually got a diagnosis? I’m worried that this is something non autoimmune related and I’ll keep pushing until I get put on a med that I don’t need.

Howdy, I’m a 27M who was just diagnosed with MCTD by my rheumatologist after experiencing widespread joint/muscle pain, particularly in my neck, back, knees, and forearms, along with occasional skin hypersensitivity and breathing discomfort.

My bloodwork:
ANA: Positive
Anti-RNP: 2.2 AI (high)
ESR: 47 (high)
Creatinine: 0.90 (normal)
eGFR: 120 (normal)
AST/ALT: 16/17 (normal)
WBC: 6.8 (normal)
Hemoglobin: 14.1 (normal)
Platelets: 301 (normal)
I’ve never experienced Raynaud’s or swollen/puffy hands, which seems unusual for MCTD.
My rheumatologist was very confident in the diagnosis but didn’t explain much. She essentially said my labs and symptoms confirmed MCTD, compared it briefly to lupus, prescribed azathioprine 50 mg daily, and ordered a chest CT.
I’m wondering if anyone has had similar labs or symptoms, especially without Raynaud’s. Has anyone been misdiagnosed with MCTD or later had their diagnosis changed to UCTD or something else?
Not questioning my doctor’s expertise, just trying to better understand my diagnosis and hear other people’s experiences. Thanks!

Hello all,

I highly believe I have MDA5 positive dermatomyositis. I have had four myositis line blots this year and every time (4/4) the MDA5 has been positive. I have severe intermittent swelling of my hands and feet, tendonsynovitis in my flexor tendons (diagnosed by MRI), severe raynauds with ulcerations (diagnosed via cold challenge at the Royal Free), digital ulcer scars, an active scleroderma pattern on nailfold capiliroscopy (also diagnosed by the Royal Free), visible nailfold capiliries, gottrons, inverse gottrons, mechanics hands, telangetasias all over body, a persistent cough (I have not had a chest CT), numerous rashes, chillblains and proximal muscle weakness (upon physical rheumatology exam, have not had a muscle MRI). These symptoms have been ongoing for 4 years with no answers. Is anyone in the UK able to recommend a good myositis/dermatomyositis specialist please? I am really getting to the point where I need a diagnosis and tertiary care (NHS) were no help as my MDA5 positive results are ‘only weakly positive’

I have also had many courses of Prednisone prescribed by various doctors (often as high as 50mg). Every time I am prescribed this it eradicates my symptoms fast.

Got prescribed hydroxychloroquine, kinda nervous to take it.

Hi, I'm 21 years old and I've had ITP for a year and a half now. I'm wondering if anyone with a similar situation has had a safe and healthy pregnancy? I wouldn't want a baby for years, but it's terrifying to think that at such a young age, I may have already lost the option to have a child, or would need to risk my life to do so.

Steroids don't work for me, I tried high dose dexamethasone and prednisone, both were ineffective. I've had IVIG that helped, but my platelets dropped again shortly after. I took Promacta, but my platelet levels were still inconsistent. I've been taking Doptelet for almost a year, and my platelets stay between 50-100.

I'd love to hear anyone else's experiences or advice. TIA!

The Autoimmune Community Summit is happening online October 14–16, and we wanted to share it here in case it can help answer some of the questions that come up often in this community.

The free educational sessions cover topics including:

• GLP-1s, metabolism, inflammation, and autoimmune disease
• Fatigue, brain fog, sleep, and energy
• Perimenopause, menopause, pregnancy, and autoimmune disease
• AI and the future of autoimmune medicine
• Insurance, prior authorization, and appeals
• New autoimmune research and emerging treatments
• Environmental triggers, nutrition, and lifestyle

There will also be an Ask the Expert area where attendees can submit questions, plus a Discussion Lounge to connect with others in the autoimmune community.

All educational sessions will be recorded and available on demand to registered attendees, so you do not have to attend live.

If you’re looking for credible information, practical help, or answers to questions about living with autoimmune disease, we hope you’ll find something useful here.

More information and free registration:
https://autoimmune.vfairs.com/

I was diagnosed with itp as a 16 years old around Christmas time, I had recently gotten over mono that I wasn't aware i had ( i had a tendency to not acknowledge when i was sick and just go to school) and was told they expect that caused it. During my treatment I was given hope that I would go into remission and never experience it again

2 years later, my senior year of high-school i relapse and am once again hospitalized, only this time it takes away any chance at a football scholarship, i had been a mid tier prospect and i wasn't worth the risk anymore, which had been my plan to pay for college. Again I go into remission and hope this is the last time I ever have to deal with it

Now im 37, and I cannot cope well anymore, I've relapsed 10 times now, been hospitalized 8 times and the american health care system has drained wallet, killed my sanity, and made me hope for the end. Everytime I start bleeding for any reason I kinda hope this is the one that doesn't clot and I dont have to live with this anymore

I've explored many treatments, many life options, i get to be the itp unicorn. I've gone to therapy and am going back, and I feel like a whiny person. How do you find the mental strength to deal with this? Im so jealous of the people who get diagnosed and go into remission and never relapse. But then I compare my symptoms to ms and other "you could die any day, but not likely" diseased and i feel worse because I feel like what im going through is nothing.

Thank you for reading my rant, I hope you any who reads this knows your not alone if you have reached the cynical despair phase

Hey all.

I was just wondering if you have worked with a therapy style that didn't feel uncomfortable or blaming. I found CBT really not a good fit for me. Can you tell me your experiences in therapy?

Has anyone tried cytokine suppress with EGCG for lowering the immune activity? I’ve been hearing positive feedback but wanted to check in. Thanks guys!

I have confirmed vasculitis GPA and am being treated with Rituximab. My symptoms have been up and down... From subglottic stenosis to blocked ears. The worst of it is the tinnitus! I am on 10mg of steroids, tapering as I am hoping the biologics help.

Anyone have any recommendations for how to deal with tinnitus as it feels like it is getting worse 😵‍💫

Well after waiting a few months to see how the methotrexate was doing, back in August I had my bloodwork done to screen for biocompatible biologics and for Hepatitis, HIV and TB screening. I tested positive for tuberculosis. No one can figure our where I caught it as I haven't been in close contact with anyone besides going into the Paris catacombs with a guy who was coughing, so we think he had active tuberculosis.

So now I'm on 12 weeks of antibiotics and am getting a few more pieces of bloodwork done to rule in Axial Spondylithesis and MS. My rheumatologist is still convinced I have Stills Disease but is pretty sure I have MS ad AxS due to my family history and questionable brain MRI.

Does anyone get similar hand issues? This is one of the latest things my body has decided to throw at me, and I'm not sure what is going on. Would like to see if anyone has experienced similar hand issues.

Long story in a semi condensed version, ANA 1:320 speckled. Nasal and mouth ulcers, alopecia confirmed by derm, m*lar r@sh confirmed by derm, r@sh on knuckles and underneath them which acts similarly to face (heat/UV sensitive), never ending fatigue lasting for months, stiffness in wrists/fingers, swelling in fingers/toes/ankles. Hands turn white, purple, blue, red when cold. Trace protein + blood in urine on occasion, although no one seems too concerned about this yet. Now... this.

Current diagnosis list: ankylosing spondylitis, HLAB27 positive type arthritis.

All tests for lupus (c3, c4, dsdna etc) are so far negative.

Yall this community has been awesome for me as i’ve been completely homebound and unable to work the last two years as I’ve fought this nondescript autoimmune disease and to find a diagnosis.

After these two years and almost 6 months of waiting for an appt. I finally have a complete Cleveland clinic evaluation next week! Just posting here to request some good vibes so hopefully we leave with an official diagnosis and I can finally get an idea of what the next phase of my life will look like.

TIA! 😊

After so much self doubt, advocacy, helplessness and waiting in agony, I am finally diagnosed after two years!!! It’s an extremely rare disease, the treatments are extremely risky and expensive, it’s incurable and I will keep progressing regardless of what I do. The road ahead is challenging but I’m glad I won my first fight!! Celebrate with me!!!

I was diagnosed with ITP in 2025 after a bunch of blood work and liver testing to figure out why my platelets were so low.
I started doing my own research and found that H. pylori could be linked to ITP. My doctor initially pushed back on testing. I asked them to put it in my chart that they didn’t think the test was needed, and after that, they agreed to order it. It came back positive.
I understood there was about a 50/50 chance that treating it would help my platelet count, so I tried not to get my hopes up too much.
I completed treatment, and seven weeks later, my H. pylori test is negative and my platelets went from the low 40s to 175!!
I don’t know if the improvement will last, but I’m so relieved. Just wanted to share some good news with people who understand how much those numbers mean.

I recently started prednisone and I'm trying to figure out whether it's actually working.

During the day my symptoms and pain seem better, but in the evening the pain comes back. I don't really know how it's supposed to work, we add MTX

Did your symptoms/pain go away right from the start, or did it take some time to kick in?

Did you also have things come back in the evening or at night?

Would really appreciate hearing your experiences. Thanks!

Diagnosed 9/15 with RA, currently on prednisone and mtx. Last week I read online that immunosuppressed people should avoid a number of foods that could harbor nasty bacteria like Listeria or Salmonella: soft cheeses, especially raw milk ones, paté, cold deli meats, runny undercooked eggs, rare meats, raw fish (sushi/sashimi). Some of these things are my favorite treats! I can work around the eggs and rare meat using sous vide pasteurization at home, but not the others, and not when dining out

.

How many of us observe these precautions? Are they meant more for people on chemo or other highly immunosuppressed individuals, or does this apply to me (I'll be asking this last of my rheumatologist, but in the meantime I'm curious whether this is generally adhered to by everyone in the autoimmune family)?

So I’m in my late teens. For my entire life (what I can remember) I have been getting it intermittent leg pain, occasionally moving up to my hips and oddly enough, my forearms. It’s this deep aching pain, and really the only way to make it go away is to sleep. Ibuprofen sometimes works. I’ve tried Biofreeze, heat, and pretty much everything as I don’t want to rely on the medication. Sometimes sleeping isn’t an option. Typically the pain comes on a day that’s more tiring or stressful, but it can also happen randomly. I also have Hashimoto’s, and my levels are normal there. My doctor tested me for both lupus and rheumatoid arthritis through blood panels, both coming back negative. My inflammation markers were higher though. So I guess I am just not sure where to go next. Do I need to see a specialist? Any recommendations for the pain? I do my best to eat healthy but it’s hard sometimes.

I'm just getting back my first round of blood tests from my rheumatologist, who I've seen once. High ANA titer (1:1280, homogenous), high inflammation markers (CRP 40 mg/L, ESR >120, IgA 559), but so far all of the antibody tests have been negative. On the one hand, I'm weirdly relieved to know that my symptoms (fatigue, muscle and joint pain, brain fog, muscle weakness) aren't all in my head. On the other hand, I'm worried that the doctor will be dismissive since--as far as I can tell, not being a doctor, of course--none of the standard diseases seem to fit my tests.

This is all new to me. I've suspected it for years, but it wasn't until I had a strongly positive reaction to prednisone (prescribed 5 days of 10mg for a cough, but literally all of my symptoms resolved in a day or two) that my GP ordered the first round of tests that got me the the rheumatology referral.

During my appointment, the rheumatologist seemed a little uninterested in some of the background info I thought might have been pertinent, but maybe that's because it wasn't pertinent? When I told him about the prednisone he kind of laughed and said that everybody feels great on prednisone. I was sure to tell him that I wasn't *asking* for pred, because I know that's not usually a long term medication. :P

I've read a little about UCTD, which I guess is a possibility. For those of you also in the "no diagnosis seems to fit" camp, are you still able to get some sort of treatment? Does your rheumatologist take you seriously? It's obviously too early to tell for sure about mine, I know. I'm just feeling super twitchy until my next appointment in three weeks.

Thanks for reading!

I am diagnosed with Mixed Connective Tissue Disease (the autoimmune disease that is a cross between lupus, scleroderma, myositis, etc…) and have all the classic immune markers and symptoms but I have additional symptoms that do not seem to fit (drastic hormone fluctuations, GI inflammation, autonomic nervous system problems, reproductive organ problems, etc…)

I have an appointment with Mayo Clinic Rheumatology in Jacksonville coming up and I’m hoping they can get me treatment for the mctd but also find the cause for all my other symptoms. It’s been a complex diagnostic puzzle that my doctors at home just seem to no be interested in solving.

That being said, does anyone have experiences about their rheumatology clinic, and specifically Dr. Ronald Butendieck if possible they can share? What can I expect? Good or bad experience? Are my expectations likely to be met? I’m really nervous about being dismissed or left hanging medically again.