r/Rheumatology

Is a lip biopsy a good idea?

No joint pain, no chronic fatigue but I have dry eyes confirmed with schirmer test and a very dry mouth confirmed by dentist. I did an ANA last year that was 1:160 nuclear homogneous, was tested again 6 weeks later and it was 1:80 dense fine speckled.

I was negative on Sjogrens anitbodies test. I have an appointment Friday to get an ultrasound of my salivary glands done. And I had an appointment for today for a lip biopsy but I backed out because I got too nervous about the horrible pain people talk about having afterward for weeks. I've also seen some people say that their rheum actually advises against it. I'm wondering what everyone's thoughts on this are?

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u/Dear-March-2433 — 5 hours ago

Officially diagnosed with lupus, rheumatologist wants to add more medications. I’ve been told to get a second opinion

Hello, I’ve been taking HCQ for about 10 weeks now and my only symptom is under eye swelling that has gotten much better since starting. The one thing I noticed is the swelling does come back when I get into the sun but not as bad as it was before. I have no joint pain and I haven’t developed a rash. I know HCQ takes more time to work and I thought my labs were a bit better than before. He’s really concerned about my ESR because it is 113. There was some protein in my urine before but my urine is back to normal. My dsdna was a 10 before but now it’s 15. My c3 before was a 10 and now it’s 14 and my c4 is now at 78 and before it was 65.

My rheumatologist now wants to put me on a low dose prednisone, cellcept and another medication I forgot the name of with HCQ. He wants to start benlysta as well because he’s concerned with lupus nephritis. I was supposed to get a biopsy done, but the hospital didn’t take my insurance so I’m still pending that. My kidney functions have been normal so far. This is all just so confusing to me. Especially when I thought I was getting better. I have a nephrology appointment soon and my rheumatologist wants to know their opinion.

My rheumatology NP believes it’s early lupus and I have a better chance of remission with aggressive treatment. What do you guys think? I’ve had people tell me when you have lupus you know, and finding all of this out is just so confusing.

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u/virgots26 — 9 hours ago

Received a call an hour ago, absolutely terrified.

Hello all.

I recently got blood work drawn (yesterday) which came back positive for ANA and at pretty high levels along with alkaline phosphatase as my doctor voiced over the phone.

I’ve been dealing with chronic pains for the past couple years with neurological episodes and since May 2025 cardiac ones, just never got answers for them. Well, now we are getting some clues. That being said, felt miserable this past week so might make sense… but still very terrified of what could be wrong. Scheduled to see a rheumatologist, a specialist I’ve never seen before, and it feels intimidating.

How’d you get through it?

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u/Spookybunnyxo — 5 hours ago

Terrified of Scleroderma

Hi there, if some doctors and/or people who know about this stuff could reply to me here I’d deeply appreciate it. I am a 28 year old female. About 8 months ago I was referred to a rheumatologist because I had a slightly low white blood cell count and weight loss.

I tested 1:80 titer and a nucleolar pattern. I have bad anxiety and this has led me to feel terrified about scleroderma.

**I tested negative for all the scleroderma antibodies.**

The doctor also looked at my hands and said I shouldn’t worry about scleroderma because I look healthy and fine. I have no symptoms of the disease.

I read someone say online that they had 1:80 and nucleolar also and tested negative for sceleroderma and then got it 7 years later. This has sent my mind spiraling.

How worried should I be about the disease popping up later down the line? I can’t stop worrying and ids interfering with the quality of my life.

Thank you!

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u/skull-cow — 1 day ago

Chronic hip pain/back pain and what to do from here.

I have been living with lower back pain since around age 15, I’m now 36 and a female. Initially started with back spasms when walking. Over the years this has progressed to hip pain as well. I feel the pain deep in my hips on both sides. It is painful to bend either side, and also to bend forward especially carrying a load e.g my three year old.

My Pain fluctuates, I have it at night and wake about once needing to change position in bed and the pain and the stiffness is at its worst currently when I wake in the morning, or after sitting or standing for a long time.

It’s hard to straighten up from sitting to standing due to stiffness. I have had a few bad flare ups over the years, usually triggered by vigorous/new exercise regimes for example 6 week gym challenges or seeing PTs doing cross fit type exercises. These flare ups have resulted in back spasms and pain so that I have reduced movement and can’t really get out of bed, but this has happened around 3 times in the past 10 years so it’s few and far between, and not recently. I’ve had episodes when less fit where it is very painful to turn over in bed.

.

I’ve had a lower back xray 10 years ago - NAD and a further Xray around a month ago also no significant changes just some minor degeneration of pubis symphasys (I’ve had 2 kids). Also had bloods recently which were NAD for CRP and other markers. Have been seeing an osteopath for the past 3 months and putting my all into rehabbing what he thinks is likely lumbar disc herniations. When I get up in the morning my stiffness and pain subsides pretty quickly when I start exercise. I have no pain when I exercise. Every day I run on a treadmill, do weights (gently) and I do my exercises from the osteopath at least twice a day, one big session in the morning and one at night. I feel at my best when I am mid exercise session, then slowly seize up when I stop. I am seeing some improvement in pain during the day, but my

pain and stiffness at night continues on, I can’t seem to improve this despite the effort I am putting in.

My GP attempted to refer me to a rheumatologist here in Australia but it was rejected. I want to know whether I should just continue to rehab this or is it reasonable that I ask for an MRI to see what the problem really is? I am not sure if this would be normal for disc herniation to have this ongoing hip pain? Any input would be greatly appreciated.

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u/Parking_Emphasis268 — 15 hours ago
▲ 3 r/Rheumatology+1 crossposts

Help With Rheumatologist

Hi everyone! I have a mast cell disorder (finding out which one in a week) and was told I need to get tested for EDS. I need advice on what to bring up to my rheumatologist to make sure I'm properly advocating myself with little to no knowledge on EDS. I was told to get evaluated because I have crooked fingers, joint pain, tmj and possible hypermobility. Many family members are also hypermobile and have a high chance of being undiagnosed with EDS, especially my mom. What do I ask for? What are some other common symptoms? My heart tests come out normal so there is no cardiovascular threat. I was also referred to a dysautonomia clinic.

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u/Connect-Squash-4631 — 2 hours ago

Possible inflammatory arthritis

I've had a swollen stiff finger and have gone through all the avenues over 6 months, clear stay. Clear ct and now I've just had a MRI with contrast. I've looked at my images and my joints have lighten up bright especially the stiff one.

I do get minor pain in feet and ankles but I brush it off but now I'm thinking it's all the same.

I have a skin rash on my hand that won't go away.

Anyway need to wait a couple weeks to go back to ortho but it appears I have both Tendonitis and Synovitis in my fingers my bloods were normal. I just expected to be in more pain if it was something like inflammatory arthritis.

u/Fancy_Confidence_105 — 2 hours ago

Barriers to Rheumatology Care Survey (Ages 20–40)

Hi everyone,

I’m an incoming medical student with a strong interest in rheumatology, and I’m working on a small patient-centered project focused on barriers to care for adults in their 20s to 40s dealing with autoimmune disease or persistent unexplained symptoms.

I’m especially interested in challenges like cost, insurance issues, difficulty accessing rheumatology care, and navigating referrals or support resources.

If this applies to you, I would really appreciate it if you could fill out this short anonymous survey. It takes about 5 to 7 minutes, and I’m hoping to use the responses to create a practical resource for patients navigating this process.

Survey link: https://docs.google.com/forms/d/e/1FAIpQLScYe5cgL_QOHOuhRGTNXJDGiG-BOUKCWcz7TxiqV-8sl2LzvA/viewform?usp=dialog

Thank you for your time!

u/Low_Celebration6536 — 18 hours ago
▲ 6 r/Rheumatology+2 crossposts

Any idea what these red, swollen spots on my fingers could be?

So for the past 3 years, I’ve woken up every couple months to these swollen, red areas on my fingers. They’re hot to the touch, itchy, and tingle when I bend my finger. It’s uncomfortable to scratch them, or to touch anything hot. It’s worse and more visible in the morning, will calm down a few hours after getting up, then will reappear the next morning. Flare-ups last a few days to a week at a time. My primary care physician didn’t know what they were, so I am going to a dermatologist soon, but I’m curious what you guys think? Thanks!

u/lemon9629 — 3 days ago

is this *actually* urgent?

  1. dx psa. hashimotos. MOGAD.

neuroimmunology ran this ANA, it did not light up at all. he had it reflexed anyway. this is what came back.

c4 low 11

RF igg high 19

RF igm high 7

anti dna 1:20 which i think just means positive if you squint really hard

rnp high 2.7.

tpo 958.

also ran a ANCA- “UNABLE TO INTERPRET DUE TO HIGH BACKGROUND FLORESCENCE ON ETHANOL AND

FORMALIN SLIDES.”

he wants me to go see rheumatology ASAP to go over these results. i’m already taking taltz and 2,000 mg of cellcept and getting ivig. i don’t feel great, that’s for sure. but i don’t think this is anything urgent? none of those numbers seems high enough to be diagnostic aside from the tpo i guess but my tsh is down from “>150” to 1.36 (not to brag), that’s already dx and managed. just looking for opinions because i can’t tell if im just at this point over it and don’t care, or if im actually not concerned because theres nothing to be concerned about.

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u/Emmarie891 — 3 days ago

Possible scleroderma? 6yo daughter experienced this swelling on her fingers for at few years and hasn't changed with any treatment.

Been to the GP and they think it may be some sort of connective tissue disorder. We've tried multiple topical treatments: steroid cream, antifungal cream, emollients to name but a few. Nothing touches it.

I've done some research into systemic and localised sclerosis and I think the symptoms are in line with localised as there are no other symptoms. I'm just looking for some info that I can take to her appointment with the rheumatology specialist. Anything is appreciated!

u/TheWarehouseOfFun — 17 hours ago

RA but more.

Hi. Hats off to Rheumatology, complex! I’m Mary. 57. Diagnosed with seropositive RA just over a year ago. My Psychologist (PHD, decades of experience, specialization in chronic illness) says my childhood trauma was extreme. I’ve been on prednisone daily for two years and long tapers regularly the 18 or so months before. I wouldn’t have made it without my PCP treating my pain. The pain was mind altering in unexpectedly beneficial ways later but, that is another discussion. I would really appreciate any insight to kind of bridge me until I can see whatever Dr I need. Lol. Maybe help

me know better how to advocate for myself and in which direction? I have ADHD too. I can’t ever get to the point. Ok. I live in an enviable community in a lot of ways but medicine isn’t one of them. I had a gastroenterologist diagnosis me with gastroparesis last week. Waiting on biopsies for Barrett’s. I’ve lost 17% of my body weight in 6 months. I’ve not had much luck swallowing and then I just lost all desire to eat. Swallow study showed I’m a great swallower to the point that my throat is supposed to take over. Then I have some muscle issues. I don’t clear the food and it comes back up into my throat. I dunno. Lots of dysfunction. My temp is all over the place. I sweat very little and almost exclusively from my feet. Had ablation for PSVT in 2023. My heart rate is well over 100 just from standing up. This is all documented in my portal. They don’t need to take my word for any of it. But! My RA which caused some mild deformity in my hands before they wrangled it, is wrangled. It’s a Christmas Fucking Miracle. I developed antibodies to humira, switched to Enbrel, added methotrexate after three months and not much improvement, went up on the dose a couple of times and at 20mg once weekly, split. It happened. CFM. Started titrating off prednisone slower than I liked but then I got to 4mg and realized the wisdom in it. lol. I’m at 2.5 currently and the rest of me has kind of tanked. I hope it’s not because I just need steroids. I’m such a bitch since I started it. It’s all such a bummer. I want to jump up and down because it won’t hurt to do so but, I’d puke. Or faint. I won’t break, my bones look better than most healthy women my age! As I’m writing this my throat is fluttering. Would you say a neuro work up is indicated? Because otherwise I think psychiatrist is gonna be the next visit. I just don’t know what to think. But I think If I don’t, I might just slip through anyone’s notice. Did I mention the throttling? I am not rereading this, I will never send it. I hope it is somewhat coherent. I do very much appreciate this being allowed.

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u/countinggirl — 19 hours ago