r/Rheumatology

I’m 54 years old and have been dealing with terrible joint pain in my elbows and hips. At times, I also have extreme fatigue, itching, hives, numbness, etc. I got sick with an URI back in February and felt awful even after it resolved. I decided to get checked out. The doctor ordered blood work. My ANA came back positive: 1:1280 nuclear, centromere. My centromere ANA came back very high at >8. My issue is I have no CREST or scleroderma symptoms but I’m testing very high. Anyone have experience with this? I know in my heart something is wrong with me. One rheumatologist pretty much gaslight me telling me it was a false positive. The other is just telling me to take a large amount of Tylenol. I am at a loss here.

Hi everyone,
I’m 27F and recently had blood work done after experiencing two miscarriages. My RE ordered an antiphospholipid antibody panel and an ANA test.
My ANA came back positive with a nuclear, speckled pattern at 1:320, but the lupus-specific testing was negative.
Looking back, I’ve had about three episodes throughout my life where I randomly broke out in itchy hives all over my legs, and sometimes around one eye. I had allergy testing done but i had no allergies, so I brushed it off and never thought much of it.
Other than that, I don’t really have any obvious autoimmune symptoms right now, which is why I’m hesitant to make an appointment with a rheumatologist. Part of me feels like they’ll just say everything is fine since I’m not actively having symptoms.
Has anyone had a similar experience with a positive ANA but negative lupus testing? Is it still worth seeing a rheumatologist?

Hi everyone,

I’m (32 F) feeling really lost and was wondering if anyone has gone through something similar or has any advice on what path to explore next.

This doesn’t include my entire medical history but about 6 months ago, I had a pretty dramatic decline in my health. I developed lower back, hip, and leg pain along with morning stiffness. If I overdo it, I often end up feeling like I have the flu with fatigue, headaches, muscle aches, feeling feverish (usually without an actual fever), and my lower body feels incredibly heavy, achy, and stiff. Gentle movement helps a little, but too much activity also makes things worse.

I was referred to rheumatology because my mom has rheumatoid arthritis which primarily affects her lower body, so they thought maybe I was developing something similar.

But most of my AVISE panel came back normal. However, I have a positive ANA, persistently elevated ESR and CRP that continue to rise, an elevated white blood cell count, and an elevated fecal calprotectin (420)

Because of those inflammatory markers, my rheumatologist initially suspected inflammatory bowel disease with extra-intestinal manifestations. I’ve had ongoing GI issues since an emergency gallbladder removal in 2024, but these newer symptoms are what have significantly changed my quality of life. I’ve now had a colonoscopy with biopsies and a capsule endoscopy, and both were normal.

Ankylosing spondylitis was also considered but I’m HLA-B27 negative, and my MRI didn’t show anything that explained my symptoms.

At this point, I’m just so confused. I don’t understand how I can have persistently elevated inflammatory markers while every test seems to come back normal.

I’ve lost a lot of my normal function and only work part-time now because I never know when I’m going to trigger more symptoms. The only things that have consistently helped are naproxen/celecoxib, and a short steroid taper.

Has anyone had a similar experience where it took a long time to get a diagnosis? Were there any conditions your rheumatologist eventually considered that weren’t
obvious at first?

I’m just wondering if anyone has been through a similar diagnostic journey or has suggestions for what I should discuss with my rheumatologist next because I see her next week.

Thank you!

After 7 years of progressing SI joint and back pain. Fatigue and all the traditional symptoms of inflammatory arthritis I started a three month trial of Humira this week. My first injection was this past Monday. My pain…..nearly all of my pain is GONE. I woke up this morning, after not having woken up multiple times overnight from pain and having to reposition, jumped out of bed and hugged my wife in the bath room and said…. I don’t hurt. For the first time in YEARS. I just can’t believe it worked so quickly.

I (32 F) have been seeing a rheumatologist since November. Did a 6 month trial and fail of plaquenil. Just started colchicine. No diagnosis yet because “I don’t fit into anything perfectly.”
Symptoms:
- 30lbs unintentional weight loss
- joint pain: large and small
- hand/ wrist and feet/ ankle stiffness with movement
- internal tremor
- hands shake with movement
- gastritis
- ulcers: genital, oral, and nasal
- red bumps that itch then ulcer
- neck stiffness followed by severe headache
- strange neuro symptoms
- photophobia
- livedo reticularis

overall pain is progressively getting worse and quality of life has decreased significantly. Each time I see the rheum I have to fight to start medication or change it. First appointment the rheum told me it’s not autoimmune. Now it’s “unknown cause but possible autoimmune”. I’m just at a loss. I’m not a rheumatologist but something doesn’t feel completely right.

EDIT:

PMH: endometriosis/ adenomyosis stable s/p hysterectomy 2 years ago, AKI from ibuprofen, VSS/ migraine since birth and stable on ajovy x 5 years, celiacs dx 11 years ago and stable, disc drusen bilaterally stable and unchanged since birth. Being followed by Gyn, neuro, GI, pain, spine, rheum, derm, ophthalmology.

I have not been able to get a firm diagnosis! I have an appointment with a neurologist next month to see if it’s nerve damage that’s causing my issue. I’ve had biopsies, blood tests, confirmed then rescinded a Lupus diagnosis, steroid injections, topical antibiotics and steroids- nothing is helping and I’m going crazy!

Here is the info I have about my condition. TLDR-
Chronic painful scalp lesions with a recurring cycle of inflammation, crusting, and breakdown; recurrent foot rash with blood vessel inflammation on biopsy; flu-like flares, joint pain, nail changes, and neuropathic pain that responds to gabapentin. Lupus and autoimmune vasculitis biopsies are negative. Looking for anyone with a similar constellation of symptoms or an eventual diagnosis.

This started around June 2024 with rashes on the tops of both feet. In October 2024 I developed painful scalp lesions. Since then I’ve had recurring flares involving my scalp, feet, joints, and what feels like my nervous system.

Symptoms:
• Extremely painful scalp lesions that start with deep burning, pressure, or nerve pain before anything is visible.
• Lesions often begin as a shiny white, tight area, then become inflamed and develop very deep, adherent scabs.
• The scabs become thick and hard, then eventually break down, ooze, and sometimes the skin underneath crumbles before healing.
• Recently, after steroid injections into the scalp, the inflammation has improved and these deep hard plugs/crusts have started surfacing and falling off on their own. They are hard, dark brown/black outside, chalky white inside, and sometimes contain small hairs.
• Hair loss around the lesions.
• Gabapentin almost completely relieved the burning nerve pain but didn’t stop the skin disease.

Feet:
• Recurrent rashes on the tops of both feet.
• Started as small red spots and were originally painless.
• Now they become itchy, burning, and painful during major flares.
• The rash can be felt with my fingertips, later turns purple/bruised, and lasts for weeks to months before fading.

Systemic symptoms during flares:
• Flu-like feeling (without respiratory symptoms)
• Severe fatigue
• Food tastes awful
• Achy thumb, elbow, and knee joints
• Skin becomes extremely sensitive, almost like a sunburn or chemical burn
• During one severe flare after walking 3-4 miles, my feet felt like they had chemical burns, my skin hurt under my arms and along my sides, my scalp flared badly, and my foot rashes blistered.
• Toenails become thin, peel, and sometimes look red underneath during flares.

Testing so far:
• Scalp biopsy was read as irritated seborrheic dermatitis with superficial lymphocytic inflammation. PAS stain negative for fungus.
• Foot biopsy with direct immunofluorescence was negative for lupus, autoimmune blistering disease, and antibody-mediated vasculitis.
• The dermatologist said the foot biopsy showed inflamed blood vessels causing the discoloration, and that the color could take a long time to fade.
• ANA was previously positive (>1:320), but repeat ANA by IFA is now negative.
Treatment:
• Steroid injections into the scalp have significantly reduced inflammation.
• As the scalp calms down, the foot rashes also seem to improve.
• Gabapentin dramatically improved the neuropathic scalp pain.

At this point I’m not necessarily looking for a diagnosis over Reddit, but I’m wondering if anyone has experienced a condition that connects:
Chronic inflammatory scalp disease
Neuropathic scalp pain
Recurrent inflammatory foot rashes with blood vessel inflammation
Flu-like flares
Joint pain
Nail changes

Has anyone had a similar experience or eventually been diagnosed with something that tied all of these together?

Help! I need help finding a good rheumatologist who will not turn me away!
So end of May, my primary care provider sent over a referral to a rheumatologist in Boise, Idaho. I live in Twin Falls area and have been seeing a rheumatologist here in town. I am still having flare up type symptoms with fever, joint pain, stiffness and extreme fatigue. I feel like I almost can’t even describe how I’m feeling. Like it hurts to move. My doctor says that it’s fibromyalgia but I wanted a second opinion & I was dissatisfied with how little digging they did into my symptoms, hence the referral.
They just called me this morning and didn’t even leave a voicemail. I called them back all excited thinking they were going to put me on the schedule. The receptionist told me that they would not take me in because their office does not take patients who want a second opinion. What the actual hell?! Anyways I said what if I don’t want a second opinion and I just want to switch doctors? She said they still will not take me because I already have a rheumatologist. I guess I should just be satisfied with the unsatisfactory care I’m receiving?
This rheumatologist was recommended to me by a coworker/friend. She initially saw a doctor in Twin Falls and they took her in.
Anyways my point is… have you ever experienced this? Also I’m looking for a specialist in lupus/fibromyalgia in the Idaho/utah/Nevada ish area if you have any recommendations I would be so thankful!

Having been around conferences I see the rheumatology being a competitive speciality. Many programs have their own candidates applying for fellowship. What are the chances of matching for someone coming from a community program with no in house rheumatology. Highly appreciate any guidance for the upcoming match.

step 3 : 221, 10 posters, 12 publications, 4 focussed in rheum. IMG, visa requiring

I was diagnosed with SLE 9/25. Two crithidia's for dsdna were positive. Low c3 and c4 9/25. Normal 2/26 and today. As was the crithidia. Anti - ro was positive today. Negative 9/25. Ana lower but still there. Took steroids a week before today's test results. And, same with 2/26. My new rheumatologist said they wouldn't matter. She said no evidence of Lupus. So very frustrated. What's going on?

So , starting off, this month mom tested for elevated levels of Crp and esr and then positive for ANA.( Mind ya, she was tested positive for UTI at the same time with elevated pus cells)

On consultation of the Rheumatologist, she prescribed hydrochloroquinine for 4 months and then asked us to take ENA test after 4 months.

But as her attender, i wanted to know how her ENA tests would turn out, as mom didn't have any symptoms of auto immune except for urticaria and then weakness in bone ( she got hysterectomy last year, i didn't see any deficiencies in her results except for b12 in borderline low).

ENA tests have come out and she is negative for everything.

Now should I consult the same doctor who prescribed 4 months of meds or have a second opinion with second doctor???

Also the doctor was so fast on prescribing the meds and didn't have empathy on her side to even listen patiently and explain different treatment approachs that we can take.

I'm really confused on how to approach this.

I’m a 48 yr old male, UK based. Got my RA diagnosis April 2025, although was unwell for almost a year prior. No illness prior to that and I have no other health conditions. Been taking Hydroxychloroquine, 200mg daily, since then, not sure if it’s doing anything. Took Methotrexate last year - tablets and injections - but side effects just wouldn’t ease so stopped it. Got approved for Rituximab and had my first dose (in 2 parts, 14 days apart) in Dec 2025, and just had my second dose yesterday, with another round due in 13 days time. Not feeling much different from
Dec to now but hoping that the second dose is more effective, which I understand is often the case. Hoping to hear from others that have taken Rituximab - was it effective, degree of improvement, etc. I’m trying to stay positive but the RA has had such a negative impact on my life it’s hard to see any significant improvement. My Rheumatologist has been excellent and has already said she will put me on another med, Filgotinib, if it turns out the Rituximab isn’t working. So positive not positive. Am teetotal, good diet - high protein, high fibre, mindful of gut health, very minimal processed foods, take omega 3 supplement daily and drink plenty water. Been on steroids since October - started on 20mg but tapered down well and currently on 2mg per day - so trying to shift a little weight but nothing major - am 85kg and trying to get to 80kg - mainly belly fat - arms and legs lean. Doing weights once a week with a personal trainer and trying to cover at least 8k steps per day - not always possible but trying. Anything obvious I’m missing..?

My rheumatology blood tests have all come back normal so far and I’m 8 years into having RA symptoms and still being turned away. I finally have a good GP but even he has admitted I’ll keep circulating in the system due to my test results.

For those of you with seronegative rheumatoid arthritis (or who had normal blood work initially), how did you eventually receive your diagnosis?

Did imaging such as an MRI or ultrasound show inflammation? Did your blood tests become positive later, or was the diagnosis based mainly on your symptoms and examination?

I’ve been given pregabalin as I’ve taken so much ibuprofen over the years that I can’t take it anymore without vomiting.

I’m not looking for a diagnosis or medical advice—I’m just interested in hearing about other people’s experiences while I wait for my follow-up appointment.

What next?

29 year old female,145lbs

Should I seek second opinion? My neurologist discharged me.
Clinical findings she discovered that were not previously found when reflexes were tested:
Sustained clonus throughout
Babinski reflex
Hoffman’s sign
Hyper reflexive joints

Normal labs:
CBC (all normal — hemoglobin, WBC, RBC, platelets)
Vitamin B12 (serum)
Methylmalonic acid (functional B12)
Vitamin B6
Vitamin B1 (thiamine)
Copper
TSH (thyroid)
Hemoglobin A1C (diabetes screening)
SPEP (protein electrophoresis)
Immunofixation (no monoclonal proteins)
Myasthenia Graves panel (AChR and MuSK antibodies)
Alpha-1 globulin at bottom of normal (0.2 of 0.2-0.4)

Normal imaging:
Brain MRI
Cervical MRI
Thoracic MRI
Lumbar CT
Normal EMG

Rheumatologist was also unable to give me answers. The only positive result I’ve ever had is:

persistently elevated Anti-phosphatidylserine/prothrombin antibodies (aPS/PT) IGM
Slightly elevated RF

Symptoms:
burning joint pain
neck/shoulder muscle trembling with lifting
Burning/electric skin sensation that travels
Body jerks (leg, ankle, arm)
Memory problems, word scanning
Extreme fatigue
Resting heart rate has stayed around 120 since one night in 2021 it shot up with a fever and never came back down, now becoming resistant to beta blockers—normal echo 3 years ago
Pencil thin stool for 2 years with normal colonoscopy
Knees constantly buckling
New onset of knees tingling upon bending, relief with extension
Pinching pain with prolonged flexion (over a few minutes), relieved with extension —-I sleep on my back with my arms and legs straight to avoid pain