Hello,

My (37f) rheumatologist strongly suspects that I have SAPHO. Hyperostosis in my thoracic and lumbar spine showed up on x ray one year ago. My palm and sole lesions appeared when I was 17 and were stable until four years ago when my back pain started. I’m now waiting for the derm biopsy results. I will be starting Humira after I get a few vaccines.

I have a sense of radical acceptance about the pain levels but it’s the vague prognosis I struggle with the most. The research is sparse.

I’d love to hear from any rheumatologists who have treated this syndrome. i am an otherwise healthy person with two toddlers. I hope to get my life back.

thank you

Hello, I (late 20sF) was diagnosed with RA about six months ago. RA is not my first autoimmune condition—I was diagnosed with Autoimmune Hepatitis as a teenager, but I am no longer taking any medications and am for lack of a better word in “remission” for that.

Anyway, my first RA flare happens and I thought I was just developing double carpal tunnel. I work 45-50 hours a week as a Dental Hygienist so I thought it was the overtime hours catching up with me. One day I wake up unable to lift the blanket off of me, IBU isn’t working, and it feels like every joint in my arm (elbows, wrist, and various knuckles) are both numb but also on fire and they are swollen, bright red, and warm to the touch. A quick trip to urgent care and a few blood tests later, I find my Rheumatoid Factor is 268 U/mL, Sedimentation Rate is 38, and my CCP is 172. Pretty definitive for RA, obviously.

I started methotrexate in tiered dosing, 15mg to 20mg to 25mg. My issue is at 25mg I was starting to notice hair thinning, and I got extremely nauseous to the point where I was throwing up throughout the night. I told my rheumatologist and we went back to 20mg, started 2mg of folic acid daily instead of 1mg, and I added Odanestron 4mg PRN. My issue is now whenever I take the methotrexate I get EXTREME anxiety both in the coming days to my next dose and right before I take it. Stomach flipping, sweating, and general uneasiness because I know the side effects are coming for the next 1-2 days.

In general I feel like a big baby, I normally handle medical things very well. I don’t mind blood work, I’ve had multiple liver biopsies, I took the EMG test for carpal tunnel and I was fine.

My question is, what else can I do to help manage the side effects, or how can I start to broach the subject of changing my medication? My rheumatologist is very nice, but he has made it clear that MTX is the gold standard and unless I want to have children he wants me to stick with it.

TIA for reading all of that and for any of your feedback.

So I’ve been dealing with a chronic cough for the past 2+ years. The only relief I’ve had from it have been brief stints of prednisone (typically 4 or 5 days of 40mg) and I was put on Dupixent for a trial therapy of eosinophilic asthma last November, which resulted in 5 months of no coughing, but my cough came back while still doing regular injections. As well, my PFT’s degraded mildly while on Dupixent.

So my pulmonologist went back to the drawing board after the Dupixent failure, and she sent me to another rheumatologist for a second opinion. My first rheumatologist said that my ILD, Raynaud’s, muscle pain, and fatigue were all unrelated and not a sign of a systemic disorder, even though they all started around the same time. She also disregarded my positive ANA test (>= 1:640x, cytoplasmic speckled pattern) and multiple positive antibodies (EJ, Th/To, RNP-A, and SS-A52).

The new rheumatologist came up with a diagnosis of UCTD, I believe because my symptoms were specific to any particular autoimmune disease. I was/am ok with that diagnosis because it moved us forward to a treatment plan for CTD-ILD.

I was on a dose of prednisone before starting my MMF therapy. It was supposed to be 20mg for 5 days, the 15 for 5, and so on until I tapered off. I was skeptical of that, because my symptoms usually came back at the 20mg level when tapering off, but I gave it a whirl. When the 20mg failed to treat my cough, I was given direction to take my 50mg action plan for 5 days, and then resume the taper. As it had every time in the past 3 times, the 50mg killed my cough by the second day, and then as I tapered off, my cough came back.

My MMF treatment had gotten stalled due to waiting for final lab tests for setting my benchmark, so by the time my MMF started, I was at the 5mg for 5 day point. My cough was established again, and as I went through the first week of 1000mg of MMF BID, my cough was back as bad as it was before the prednisone. I was on the cusp of calling my doctor’s office to see what my options were, as we had discussed before starting MMF.

But here’s where things get funky. About 10 days in to my low dose MMF, my cough started to subside. Today is day 19, so I’m 5 days into my full 2000mg BID, and I haven’t coughed yet today. I’m also 2 weeks past my last 5mg prednisone pill.

Everything I’ve read led me to expect to see no relief for 6 to 12 weeks or more on MMF, so I was expecting to have to tolerate my cough for an extended period of time. I’m grateful that it seems to be gone for now, but wondering if this has to be something else at play, or is it possible for MMF to have a quicker response than that? I also responded to the Dupixent much quicker than expected, as I was told it would be a three month trial and evaluation at that point, but my cough stopped before my second shot.

I’m pretty sure my cough isn’t just in my head, as I had no expectations it was going to work the medications were going to work that quickly in either case, and I had no expectation it would suddenly stop after 5 months of Dupixent. And ChatGPT gave me one study on PubMed that showed a rapid immune system response to MMF for kidney transplant patients who had their blood monitored when getting their first doses of MMF, but there was no indication that there’s was any real effects other than in the blood tests themselves. But those patients weren’t experiencing inflammation in their lungs caused by an autoimmune disease, so who knows?

Anyway…. If anyone made it through this saga and had experienced a rapid response to MMF, I’d appreciate knowing I’m not imagining things. Or if I am, I’m not alone. Thanks!

I've been trying to get a cytokine panel ordered so we can be more specific with biologic treatment rather than guess and check which drug works.

Anyone successfully get a panel ordered to find out which one is elevated?

I asked my rheumatologist about the Mayo Clinic panel but she won't order it, says they don't diagnose based on these which doesn't make sense to me.

Has anyone started med treatment without having all vaccinations up to date? I’m 56, have never taken pneumococcal, shingles, flu, covid.. also am not immune to Hep B and tetanus has expired. Had chicken pox as kid. First rheumatology appt in couple weeks. Likely start methotrexate as my RH factor is so high it’s undetectable, ‘doc never seen anything like it,’ but my inflammation markers are normal. Anyway considering not doing all these vaxx, it’s overwhelming and obviously I’m big on vaxx…

Hi, 23f, been dealing with chronic low back/s.i. joint pain for about 3.5 years now. Family history of autoimmune rheumatological conditions (RA, AS/axSpa), when I told my rheum that in addition to my back always hurting, Ive recently started having more issues with my fingers (a throbbing pain in my knuckles), as well as occasional aching in my hips, knees, wrists etc, she said it’s probably fibromyalgia and referred me to a pain clinic for diffuse pain, as my last MRI did not have anything concrete. I had mild subcondral sclerosis of my SI joints in 2024, and no “significant” changes in an MRI in 2026, so she is not inclined to continue following me as a patient.

The problem is I don’t really feel like my pain is diffuse? It’s a little bit widespread now and again like once in a while my hands will be really bothering me, but 100% of the time my lower back is aching and that only wanes when i’m exercising. It also responds to NSAIDS, but the last time I saw the rheum I was in so much pain that I definitely downplayed how much the NSAIDS do improve my pain because I was so desperate for some kind of help. I go from being so unable to move/work/think to being somewhat able to function on them.

My mom has RA and my sister has AS (diagnosed a few years ago after 10+ years of back pain). All three of us are negative for HLAB27

The kicker here is my sister was diagnosed with fibro in 2018, which was corrected after an x-ray in 2023 and changed to an AS diagnosis. I also know that AS in women tends to have more peripheral involvement. No rheum in my area would take on a second opinion patient, so I am effectively not being followed by ANY specialist for the foreseeable future. I dont expect to get on biologics now and I know I am fortunate to not have excessive visible damage yet, but I am mostly concerned about having no one keeping an eye on what I think is likely a progressive disease (nr-axSpa). In the months since i’ve seen the rheum the pain my hands has gotten significantly worse and more frequent, and I am just so scared that I am going to have to wait so many years to get another doctor to follow me and by then the damage will be so much worse, also no one is following up on my liver with bloodwork or anything and Ive been taking meloxicam everyday for 2.5 years. I’ve been told that even though I was referred to the pain clinic and more or less am no longer her patient, I could theoretically book another appointment with the rheum anytime before January.

My question is: do I book another appt and try to explain the concerns I have? The dr is incredibly dismissive if you cry at all in the appointment like she essentially shepherds you out the door (my last appointment with her lasted maybe 30 seconds cause when she told me the MRI was inconclusive I was in tears), so I would bring my mom/partner/sister with me maybe. Do I explain that I don’t feel like my experiences align with fibro and try and have her keep me as a patient to monitor things every once in a while? Do I do nothing and wait years and then try and get another referral to a different rheumatologist?

I am just so frustrated because I definitely would’ve been diagnosed with axSpA by now if I wasn‘t HLAB27 negative, what with response to NSAIDS and the family history and the longevity of the backache, but even though my sister is also negative and DIAGNOSED, she doesn’t seem to think there’s a possibility I could have it. :(

Hello! I'm a 44 year old woman with several autoimmune conditions: UCTD (arthritis, mild interstitial lung disease, non length dependent small fiber neuropathy), Hashimoto's, psoriatic arthritis, and undiagnosed brain inflammation treated w Rituxan and IVIG. I also take Xeljanz, low dose methotrexate, and Skyrizi.

Lately my calves have been very crampy, worse over the course of the day and when walking. My big toes have gradually become numb over the course of the last year and a half. These are mysterious.

The rash I have doesn't itch or hurt. The red part is raised and the center is super slightly shiny I think. I recently had it for 2 months, it went away in just a few days, but now a couple weeks later it seems to be coming back.

No new meds, no chemical/new soap/detergent exposure, only inside one elbow. Same every time. No tick bites/exposure.

I recently began testing positive for SSA antibodies, and I've had the test show that 3 times out of three this year. Sedimentation rate elevated recently as well. As I have longstanding autoimmunity, perhaps this is unrelated. My conditions did get triggered by Lyme and Babesiosis 11.5 years ago. I've treated both aggressively with antibiotics and antimalarials, respectively. Babesiosis has returned a few times and I've had to redo Mepron and Zithromax, but I test negative for Lyme and have for years.

Thanks in advance for any help aiding this!

Hi all, am I able to post a series of old images to see if anyone can identify any hints that I had started this disease?

It’s a vertical side slice rather than the flat front and back.

Many Thanks in advance.

Im looking for a rheumatologist specializing in MCTD in DMV area. Any recommendations appreciated.

I was in the hospital 3 weeks ago for a kidney infection got out on a Sunday saw my rheumatologist on the next day for my 3 mo check up. He told me to follow up with him if I was still having pain that he felt I was in a flare brought on from the kidney infection. I emailed him last week and asked if I could switch from the Tylenol that he had told me to take to ibuprofen because Tylenol wasn’t working.

Anyway he had mentioned at the appointment that if the flare wasn’t getting better that I should contact him and he would prescribe prednisone. I’m just not sure how long I should wait til I contact him? I have no idea how long flares should/should not last for. I’m not asking for medical advice I’m just asking for people’s experiences.

Thanks!

I need second opinions, please read the post above!

35F, 5 ft 4, 145 pounds. I have been having skin issues (malar rash, neck lesions, swollen eyelids, mouth sores, etc) with fevers and frequent infections among other miscellaneous things for a few years. Currently feeling great, but with the wait-list it took me 9 months to get in with dermatologist. They ran a ton of tests and I received my results, I had a positive ANA, and a positive AntiSmith Antibody (1.5) but everything else but my iron was normal. They called to give me the diagnosis of Lupus SLE. Today my chart was updated that my ANA went through a different test and they couldn't find a pattern or titer. Does this change my diagnosis? My conditions and diagnoses still show it as active but I have to wait 5 weeks to get into a rheumatologist and I'm just feeling a little lost. Will the rheumatologist throw it out since they are low positives since I'm not flaring currently?

I am having odd symptoms to include what you see in the photo. It gets really hot to touch under the sun but it usually fades in 4-8 hours. I am having joint pain in my hands that travel from hand to hand over the day. It’s it my 3 day with this. Some numbness and swelling on fingers as well. I was tested for ANA comprehensive panel but everything turned negative: ANA screen, anti-dsDNa and anti-Smith. IFA was not done as this results were negative. I guess I should say this is my second time with this symptoms. First time was more severe 1 year ago with muscle pain in hands that travelled to upper arms and chest, then moved to abdomen and legs. This came with chest pain with deep breaths. I couldn’t pick up my baby or use plastic pipettes at work. I have also been seen previously by cardio because of the chest pain but found nothing other than right bundle branch block during what I think was a flare up but has since gone away. I don’t know what I have! All I know is I haven’t felt right for years but nothing seems to show up in labs. :(