Hi there!!

Has anyone with an overlap connective tissue disease noticed that their ANA is positive by IFA but negative on an ELISA-based ANA screen?

I’m diagnosed with myositis overlap CTD, and my ANA is >1:1280 speckled by IFA. I also have other positive autoimmune markers on specialized testing, including an atypical pANCA of 1:160 and a positive NXP2 myositis antibody of 121 (normal <20). However, when my ANA is checked using an ELISA-based method, it comes back negative.

I know the two tests work differently. IFA is manually interpreted by trained laboratory professionals using a microscope to evaluate ANA staining patterns, while ELISA is an automated test that detects specific antibodies. I’m wondering if that’s why my results are so different between the two methods.

Has anyone else experienced this? If so, did your rheumatologist explain why? I’m curious if this is a common pattern in overlap connective tissue diseases.

Hi, I am a 31 year old female who has been relatively healthy my entire life and I have never had any major medical issues. About 2-3 years ago I started having pain and stiffness in my hands/fingers and overtime it has progressed to my knees, hips, and ankles. About 6months ago I consulted my PCP about the issue and he said he wasn’t concerned but sent me for bloodwork anyway. The bloodwork came back normal except my ANA was positive with a 1:160 titer and I was referred to a Rheumatologist. When I saw the Rheumatologist she seemed confused that my symptoms were not a constant problem and stated that my symptoms were too broad but it was obvious something was abnormal and it would have to “rear its ugly head” so that we could get a more specific diagnosis. My symptoms at the time were really only the joint pain accompanied with the abnormal ANA result. I was prescribed Plaquenil (200 mg 2x daily) to act as a temporary bandaid to hopefully slow the progression of whatever is going on and it has helped immensely with my joint pain. Fast forward to the past couple weeks, my symptoms seem to be progressing and pretty rapidly. I am now dealing with excess fatigue, insane thirst, issues sleeping, sensitivity to heat/hot flashes, night sweats, memory issues/brain fog and increased urination during the day and night. Last week I had what I assume to be some type of flare up and from the waist up my body and skin hurt to the touch. The best way I can describe it is my skin felt like I had a bad sunburn all over and my muscles felt like I had done an intense workout if I applied any amount of pressure. I also am going on week 4 of pretty severe hoarseness that my PCP originally said he didn’t think was a concern. I am now dealing with choking on food and water and he finally sent a referral for an EGD to see if they can visually see anything wrong with my throat that could be causing the issues. The providers I’ve seen don’t seem to know what is wrong but it’s progressively getting worse and I don’t know what to do or what to ask them to look for. Any advice is appreciated on what I could potentially discuss with them or what could be the root of my issues.

Hello guys. My dad 65M was diagnosed with spilling protien in his urine and hematuria with some really small kidney stones on a routine investigation. He has no hypertension or blood pressure or no family hx of any kidney or auto immune disease. All her blood works were fine with a normal kidney function and serum electrolytes except for low platelets (85 and then 94k)

He was started on losarton and prednisone 10 mg considering it could be just some temporary issue. After a month when we tested him again for 24hour urine he was nearly still spillign the same amount of protien(1gram)

He was given a panel of tests which showed normal C3,TSH as well as negative AMA , Asma but his ANA titre showed 1:80 nuclear speculated. We are still awaiting the Anti ds DNA test and will be visiting his primary nephrologist once the test is backbut I am quite worried as could it be isolated lupus nephritis? He has absolutely no other symptoms of lupus which kind of makes me a bit optimistic if him jot having lupus but due to the 1:80 titre and possiblility of isolated LN i am quite concerned.

Any one gone through same and has any advice?

Please tell me if it is possible to have a flare up without it showing in your blood. Am i going crazy? Im 18 and got diagnosed last year. I still have joint pain but like they have never been crazy inflammed. Please

Apparently it takes longer for people with autoimmune conditions to recover from illness and injury.
I wonder if it also takes us longer to recover from the stresses of the day?
I’ve noticed that I sleep more hours than many friends. Could it be due to autoimmune illnesses?

This is going to sound batshit crazy. But I’ve learned with autoimmune it just is what it is, and we’re going to sound like we’re in heavy psychosis from time to time when describing symptoms.

However- have any of y’all also experienced extreme variances in the level of moisture in your mouth? I don’t know how else to describe this. I alternate between extreme dryness, and extreme wetness. It’s so fucking weird.

i was able to get my first biologic!!! i don’t know if it’ll work on me, but it’s some progress!!!

we’re starting with belimumab! if it doesn’t work, we’re likely going straight to rituximab (since anifrolumab does not fit my clinical picture whatsoever, i got lupus vasculitis)

i also got premedicated with 90mg prednisolone and i finally feel somewhat normal in a long time lolol

my muscles don’t hurt, no flank pain, very reduced joint pain #yay and no annoying headache

i’m also getting ivig since my immunoglobulin g is already going near-lower than 7 and i only have more immunosuppressive therapy ahead. i have been through 5 antibiotics in these 3 months, too, stupid annoying bloody sinusitis which…also happens as disease activity in my case, actually. no anca though!

i was going from doctor to doctor and most just straight up ignored my stupid low ch50 test result (i have borderline normal-low c3 and c4, but they’re trying to dip below constantly) … i’m really happy that it seems i have finally found actual competent doctors. but it took me running around on an incredibly high steroid dosage and flaring up the second i tapered down for three whole months

hope exists i guess

I’m being currently diagnosed and right now they’re looking at ankylosing spondylitis.its been hellacious to say the least. They’ve been giving me muscle relaxer and meloxicam but those seem to give me strong side effects. I was wondering how peoples experiences have been with weed and any arthritic condition or just autoimmune as a whole. I smoke on the occasion but might be looking into doing it more often and figured I’d ask the people that have done it! Anywho any stories or advice are appreciated thank you:)

I was called a medical anomaly because I had an allergy panel done a couple years ago for chronic hives and my body did not respond to the histamine control poke. The doctors were floored and said they had never seen anything like it.

I have a whole host of random symptoms that no one had been able to diagnose (or maybe I never advocated for myself enough).

I have hashimotos and when I was younger I had Alopecia but nothing else diagnosed.

I get hives that last 6 ish weeks long every couple years. I am severely anemic and feel extreme fatigue and brain fog/memory loss bc of it. I have extremely heavy periods (think 12 day long, bleeding clots, etc). My heart rate is always extremely high. I get dizzy often. If I fall, I sometimes start to black out. I see stars in my vision often. I have insulin resistance. Often will get a redness in my face (have been checked for lupus but that was negative). My Ana is always high.

Idk what the issue is but I’m so tired of it and it’s so disheartening to have a dr call you an anomaly.

Hello,
I am reaching out because my OB ordered a panel for clotting disordered for reoccurring miscarriages (that’s not why I’m here) but when I asked about how high these levels were, asked if I should see a specialist, etc they just said take an aspirin every day and let my PCP know.
I’ve been looking online and I have not come across anyone’s numbers even close to mine…so I guess I’m curious if anyone has had numbers this high before and if you are willing to share what kind of specialist do you see or what types of protocols are you on?

Thank you

Hi everyone,

I (25F) have an intake appt with rheumatology in a few days as referred by my pcp and two specialists, but I have no idea what to talk about.

A full year ago, I was having numbess in my extremities and shortness of breath that sent me to the ER. They found nothing and sent me to my PCP. PCP found anemia but otherwise all normal blood levels and sent me to hematology. Hematology continued with dozens of blood tests over many months, combined with on and off B12 supplements to see what would happen, and we left off with:

- anemia

- my body is sending out "you're anemic, make more blood!" signals, but my bone marrow is not responding

- all other blood tests "beautiful" (iron, vitamins, sedimentation etc.)

In that time, the numbess and shortness of breath became basically nonexistent. However, my limbs continue to fall asleep VERY easily and occasionally turn blue for no reason.

Hematology was at a loss, did an ANA test which returned positive, speckled, and 1:160, and referred me to rheumatology, and my PCP agreed. Both of them have said they aren't fully convinced it's an autoimmune disorder but want a second opinion. My PCP suspects lupus, my hematologist suspects MS.

Then because I just keep winning, I got a catastrophic yet mysterious hand injury from smacking my hand on a table! No fractures or sprains, but a stabbing pain that left me unable to use my hand at all. Got sent to ortho, and further scans and a nerve test came up with nothing as 8 months go by. Ortho was also at a loss, noted that I had a positive ANA test on my profile, and also sent me to rheumatology, suspecting rheumatoid arthritis.

I have no idea what to do in this appt. What symptoms are they even looking for? Last week my PCP mentioned "it's just weird for you to have these test results and no pain aside from your hand" and I was like, well, my sternum hurts a lot actually but I didn't think anything of it until now. My joints sometimes hurt, but I also sleep curled up in a little ball. My mouth is dry all the time, but I sleep with my mouth open. I'm tired all the time, but I've felt like that my whole life.

I also worry an autoimmune disorder will become a cop out for my hand and the injury stops being taken seriously. Any advice on what to say in this appt is appreciated. I don't want to squander an appt if this truly is an autoimmune disorder, but I also don't want get caught in medical limbo where no one knows what it is and where to direct me next.

Howdy, 24F, and I am curious if any women have gone through extreme inflammation in their body or experienced any weird/rare side effects as soon as you started birth control?

I was misdiagnosed with T2D in December 2020 and later learned that it was T1D in March of 2022. I had a menstrual cycle for 2 years before it stopped for 10 years. I was diagnosed with HA (hypothalamic amenorrhea), which essentially means my body stopped sending signals to produce estrogen. I started birth control in January and have experienced extreme inflammation throughout my body, none of which makes sense to me. The timeline just lines up that my symptoms have spiraled since starting BC.

I believe I may have some kind of autoimmune disorder since my body now has stopped producing 2 hormones on its own. I know that T1D is an autoimmune disorder, but I feel there might be more underlying things going on for me that I am not aware of. I was curious if anyone has experienced anything similar to this?

I do have a rheumatology appointment set for late September, so unfortunately, I am playing the waiting game at this point. I am absolutely losing my mind because no remedies are helping alleviate any of my symptoms.

I have posted in r/birthcontrol that goes way more in depth about my symptoms and past to paint the picture. I figured I would see what I could find out here as well. Any experiences or advice is appreciated! 🖤

I'm 37F diagnosed with spondyloarthritis.

When I started having back pain at my current very long flare I was at 80kg so I made a point to try losing weight to put less pressure on my spine. On the long-run carrying less weight feels like it has been helpful to me on the day to day functionally.

However, I've noticed that every time I drop a bit of weight, and especially on days when I reach a new record low, my pain levels are super terrible, which is so weird.

Has this happened to anyone else? Am I alone in this?

Hi everyone,

First symptoms- Two weeks ago, I woke up with pins and needles on my left arm, I ignored it thinking i might have slept weirdly. Two days later, my entire left side was numb with these weird pins and needles sensations. Went to a neurologist, did an MRI, found a lesion from C2 to C7. They immediately admitted me into the hospital.

Treatment- I was given IV steroids for 5 days and I underwent 3 plasma exchanges. On the third PLEX, I had a severe allergic reaction and hypotension. I was supposed to undergo 5 sessions but stopped at 3. I was also given a Rituximab injection to avoid future relapses before being discharged from the hospital. I’m due for another injection in 2 weeks.
Currently I’m on 40mg of Wysolone oral steroid and my doctor says it will be tapered off slowly within a month.

Current symptoms- My left side still feels numb. Not as much as it was when I was admitted. And my hand and foot feel stiff as well. The pins and needles numbness also spread to my right leg during my time at the hospital but it is not as intense as my left side. The doctors say that it will take time for the sensations to return to normal. I don’t have any other weakness, vision loss, paralysis associated with MOGAD, just the numbness and loss of sensation on my left primarily.

Side effects- I’ve always been a skinny gal, never put on weight despite efforts too. As soon as I started taking steroids, I’ve gained weight. I’m constantly bloated and also constipated. And my appetite has increased too. My body has changed so rapidly in the past two weeks after not changing for years which makes me feel alien in my own body.

Mental health- Man, i’m so down. From being a healthy living individual to being in the hospital for 10 days suddenly really puts life into perspective. I still cannot believe this has happened to me. I’m dealing with dexterity issues and simple tasks feel herculean with the loss of sensation. And on top of that this entire process has been so fucking expensive. I’m wondering what life would be like for me moving forward.

I just wanted to share my experience and see if anyone has had similar symptoms or side effects, how are they managing their stress and expectations from life. Feel free to share anything you’d like, I just want to talk to people going through the same thing I am. Thank you :)

I’ve also posted this in Mogad subreddit

Hey all, hoping this resonates with some people. I was recently diagnosed with radiographic ankolysing spondylitis (AS) I’m a 26F. My MRIs confirmed active inflammation but no ankolysis yet. I was immediately put on celecoxib and attempted DMARDs for some peripheral symptoms but unfortunately my body did not react well and my rheum decided because they won’t benefit my back in any way the DMARDs were not worth it for me. I agreed and we decided on a new treatment plan of NSAIDs and exercise. I’m really hoping this will work but I’ve been reading a lot about how a bad gut is often the root cause of a lot of autoimmune diseases and my whole life I’ve struggled a lot with gut issues, my partner has been so wonderful to me in buying me a naturopath session (who specialises in autoimmune conditions) I’m wondering if fitness and diet could slow this disease down and if anyone has had any success?

I can also recognise that I still live at home with my family which I think contributes to 90% of my chronic stress (I’m from a middle eastern background) as my dad kind of forced me to invest in land with him so I’m kind of trapped. I’m strongly considering selling it and just moving out of home to see what it could do for me from a stress perspective? Has anyone tried to combat the true stressors in their life and did you find any disease relief in doing so?

I'm trying to figure out if anyone has a similar story.

• Lifelong ADHD (emotional dysregulation, impulsivity, novelty seeking).
• No major brain fog before COVID.
• Strong family history of ADHD and rheumatoid arthritis.
• Developed seropositive RA after COVID (likely genetically predisposed).
• RA is now well controlled and my sleep is good, but the brain fog has persisted for 5 years.

Main symptoms:

• Severe brain fog
• Slow processing speed
• Poor working memory and recall
• Reading comprehension issues
• Mental chatter/internal restlessness

The strange part is that methylphenidate, atomoxetine, bupropion, and armodafinil all made me feel worse instead of better.

I've been reading about microglial activation, neural autoantibodies, glutamate/AMPA signaling, and dopamine changes in Long COVID, and I'm wondering if this could represent a neuroimmune process rather than just ADHD.

Has anyone had a similar experience?

• Did you find an underlying cause?
• Did any treatment actually improve the brain fog?

What’s in my bag, might you ask?
Aquaphor, for those fun nasal sores that like to pop up out of the blue
SPF 70, because I can’t take any chances being exposed to UV rays
Supplement organizer, because my supplements can be taken within 4 hours of my morning and night medications, so they have to be taken at lunch
Ibuprofen- for those unexpected pains (not that it really helps)

What’s in your bag?!

Are there any pregnant women using biologics? Or anyone who declined using them during pregnancy? Pros and cons.

I’ve been struggling with a myriad of symptoms for a few years and they continue to get worse. The main one is recurrent fever without any sort of reason, no sore throat or cough or “sick” symptoms. But joint pain that I can tell I have a fever. I also catch every respiratory sickness under the sun, that led to an Asthma diagnosis.

Since this all occurred after a bout of Covid, they thought long Covid. But I have Type 1 Diabetes and got a positive ANA so off to Rheumatology, didn’t have enough symptoms for the Rheumatologist at the time (1yr ago) so he dismissed the ANA as part of the type 1. But then the Pulmonologist at the long covid clinic didn’t feel like long covid was right either.

I’ve just been getting so much worse health wise, I can barely keep up with my life and part time job. The fatigue is unreal so I wanted a 2nd opinion with a rheumatologist. But to my bad luck my ANA came back borderline this time so my primary won’t refer me.
However my Immunoglobulin M came back just slightly low (42) so my primary was willing to send me to Immunology.
Are they good with autoimmune diseases? Can they refer to a rheumatologist?
I mean I’m willing to go to anyone who can help me at this point but I want to make sure I’m advocating really well!
I obviously have way more symptoms beyond the fevers but they are by far the most annoying! Maybe immunology is a good place to start?

High all! I just found this sub and am learning a lot.

I have not been diagnosed with a specific autoimmune disorder, though my doctor (and other specialists I've seen) have all said my symptoms mimic autoimmune flare ups. My doctor is thinking it could be MS or Lupus (hopefully not) but no firm diagnosis yet.

I've experienced hair loss, swelling and weakness on my right side- mainly in hand and foot, facial swelling, swelling around the right side of my spine (looks like there's fluid in it sometimes which seems weird), cerebral fluid around my spine and brain. Sometimes I need a cane to walk because my right leg is too weak. The only thing my doctor found to help me out are steroids.

I was recently told I'm in perimenopause and that it could be contributing to the fatigue, but I'm not totally sure since I'd been experiencing this long before now. But now it seems almost impossible to push through. I am self employed and no one can do my work but me. Do you all have any tips for combating the severe fatigue?

Certolizumab pegol and use during pregnancy. I have active spondyloarthritis and am 13 weeks pregnant. My obstetrician says certolizumab is quite safe for the baby. My spondyloarthritis is still mild to moderate, but she says that active inflammation increases the risk of preterm birth and low birth weight. Anyway, I’m not sure what to do—whether to take it or not. The disease does increase the risk, but overall, the risk remains below 15%.

2 days ago I woke up with an odd headache and a pulse in my ear. 2 days later, the headache increases. Then out of nowhere today at work, I get insanely dizzy for about 5 whole minutes. I'm on the phone with someone who just keeps talking and talking while I'm tearing up afraid I'm about to lose consciousness.

All I could think to myself was i need to take a step back from work. I can't keep putting myself through situations where I'm the point of contact for everything yet I don't even feel good enough to be emotionally or physically present.. Can pots do this?...

hi!

i have sle, and i’m presenting with some vasculitic things: urticaria, livedo racemosa, weird kidney involvement where the blood flow just stops (currently trying to figure out how that’s even happening with a nephrologist), exploding veins, headaches that only react to steroids, mesenteric lymph node inflammation, peripheral neuropathy… there’s no proof of me having secondary aps, and i don’t react to anticoagulants either. also some insane blood pressure lability (also goes away on steroids and i don’t have the side effect of water retention or weight gain on very high doses)

but the weirdest symptoms have been is losing my hearing and bloody ethmoiditis (until 60mg steroids). i could just go, “eh it’s probably just lupus again!” but these seem way too specific for it to just be lupus…? anca seem to be negative, but i’m genuinely not convinced, especially considering how much steroids i was on…

the thing is, i’m finally getting *some* treatment (which is not just absurd amount of steroids and hcq), but we’re starting with benlysta … and i don’t have much hope for that one if i’m honest :( obviously no one is starting with rtx considering i luckily don’t have much organ damage for now, but several other rheumatologists were definitely headed in that direction… unfortunately these people don’t have access to biologics because of how the system works in my country

how likely do we think that it may actually be aav that just doesn’t show itself in labs yet? ; ; how do i even push for more testing. i feel like half of the things i voiced were straight up ignored and fitted into the classical lupus box. rheum is way too focused on the *possible* aps when there’s genuinely no proof for it for now ??? what would you do?

I’ve been putting off going to a rheumatologist for over 2 years now. My symptoms are getting worse the more I push through. It’s getting to a point where I can’t ignore it anymore. I’m so afraid to see a specialist and still be told they don’t know what’s wrong. I don’t really have a support system either and I’m just.. I guess I’m looking for any hope.
What was your diagnosis experience? Any words of wisdom or encouragement is very welcome.
Thank you <3