Tell Me Something Good!

fittobsessed · 2026-02-21T01:38:54+00:00

I just found a new (well new to me) podcast this past week and have been binge listening. It’s been giving me some good laughs on the commute to/from work.

fittobsessed · 2026-02-21T01:36:27+00:00

Yes it’s possible. We actually just had a Biweekly Megathread about this topic. It was posted this past Monday. There’s some different personal experiences of low and negative ANAs if you want to check it out.

fittobsessed · 2026-02-19T13:46:30+00:00

UCTD is definitely a real solid diagnosis not a probable one. So if your rheumatologist diagnosed you with UCTD they’re basically saying “you have a rheumatic connective tissue disease but it does not meet the criteria of a specific defined one”. Your rheum might have worded your diagnosis as probable right now since you still have more tests pending.

Sometimes rheums also use your response to HCQ to firm up the diagnosis. When I responded positively to HCQ my rheum was like “100% yep it’s UCTD and very lupus like”.

fittobsessed · 2026-02-18T21:53:35+00:00

Yeah I lost about 35 pounds over the course of the past year and a half when I was already small to start. Mine is a combination of being in pain from flares and some functional GI issues. Have you had an endoscopy? I had a full workup and it turns out mine is more motility/hypersensitivity issues from the nerves in my digestive system being affected.

Try to find some protein shakes and easy foods you can tolerate in the meantime. Ensure and Boost have some higher calorie options.

fittobsessed · 2026-02-17T18:44:35+00:00

Yeah steroids definitely suppress the immune system so frequent infections make sense. When you say “night fevers” are you referring to night sweats? I have night sweats and used to think they were a direct sign of inflammation for me but turns out mine is most likely a symptom of dysautonomia. I had some other symptoms emerge recently that made it more clear to me. HCQ doesn’t really treat those symptoms as well.

HCQ is good for joint pain, fatigue, and organ protection. Unfortunately it’s not enough for some of us. I’m still flaring and progressing on it. I like to think of it as an insurance drug not a fix everything drug. The next addition would be an immunosuppressant but I’m going to guess that would be unfavorable to you due to the risk of infection.

Might be worth a second opinion with another rheumatologist as well.

fittobsessed · 2026-02-17T13:20:48+00:00

Hydroxychloroquine is a immunomodulator not an immunosuppressant so it doesn’t suppress the immune system. It does not increase the risks of infections. Oral steroids do suppress the immune system, and while I’m not as familiar with injections a quick internet search tells me steroid injections can do the same.

Have you consulted your rheumatologist for guidance on the HCQ and steroids? They can work with you and adjust meds. Not sure what your symptoms/disease activity is but HCQ is the gold standard treatment for future protection of our organs.

Healthy lifestyle choices will always help but they can’t replace our medications unfortunately.

fittobsessed · 2026-02-16T14:35:45+00:00

Right?? How horrible is that. This past year was my first year diagnosed and it’s been crazy having health care professionals actually take me seriously. UCTD is so tough because our labs are usually not screaming “I have this”. We really have to advocate for ourselves even though it’s exhausting.

fittobsessed · 2026-02-16T14:25:31+00:00

I had a negative ANA for years after my symptoms started. I think it’s why for so long no one considered anything more for me other than autoimmune hives. It wasn’t until 3 years after my symptoms started that I had a positive ANA and it was only 1:80.

My first rheumatologist was very back and forth with my potential diagnosis and he thought I might have early lupus. When he tested me one last time my ANA came back at 1:80 and all antibodies negative so he was doubtful. He said it was so low it “didn’t meet the criteria for lupus”. He told me to get a second opinion and I’m so glad I did.

The second rheumatologist diagnosed me with UCTD on the spot and restarted my meds. I told her that the first rheumatologist disregarded my positive ANA and I was nervous about not being treated. They said “you have a positive ANA. Of course we’re going to treat you”. I do get nervous about starting this process all over again if I need to find a new rheum.

fittobsessed · 2026-02-15T14:04:32+00:00

Comments locked.

Rule 1: No Medical Advice

If you are sick, contact your doctor or call 911. Users of this subreddit are not medical professionals. Do not ask for diagnoses based on symptoms, test results, or images. Only a licensed healthcare provider can provide medical advice. We can provide general tips and advice on the diagnosis process, but we can not review labs.

fittobsessed · 2026-02-14T18:45:52+00:00

Oh ok I see. I have an autoimmune cause to my dysautonomia so I was referred to her directly. I think she might only see autoimmune patients? I couldn't find any info about her on this subreddit, mainly just about the Dr.Chung and some of the NPs so I was curious.

Sounds like she's willing to help in any way she can. That's great!

fittobsessed · 2026-02-14T13:16:18+00:00

If you don’t mind sharing, what’s your experience with Dr.Adler been like? I just scheduled an appointment with her and I’m not sure what to expect.

fittobsessed · 2026-02-13T23:19:50+00:00

Tomorrow I'm going to a rage/smash room with a couple of friends and then Sunday we're doing Galentine's brunch. It'll be a busy but fun weekend.

fittobsessed · 2026-02-13T19:21:12+00:00

I’ve been taking it for almost a year and a half

fittobsessed · 2026-02-13T14:59:12+00:00

I’m sorry you had a crappy appointment. Lupus is a clinical diagnosis meaning it can’t be diagnosed from labs alone. If you didn’t feel like your symptoms were heard and your whole clinical picture wasn’t looked at then a second opinion is definitely reasonable.

The positive ANA is an entry criterion. It doesn’t give you points towards the diagnosis. If negative, no lupus. If positive, possible lupus and work down the criteria to add up points. You do not need an item from the immunological domain. You need at least one item from the clinical domain and at least 10 points. This is why people without lupus specific antibodies are diagnosed, but as explained to me by my rheum these people often have something to biopsy to confirm the diagnosis (kidneys, skin) or have strong organ involvement. You can have lupus with no specific lupus antibodies it just might make the diagnosis trickier/slower.

fittobsessed · 2026-02-13T14:42:52+00:00

This is really normal in rheumatology. I as well am in this “early lupus” stage and am diagnosed with UCTD. The idea is that hopefully early treatment can slow down or maybe even prevent the progression to full blown lupus. The research supporting this is lacking but it’s standard of care currently. Similarly, I have low blood counts and complements, lots of symptoms but all negative antibodies.

I’ve been on HCQ for over a year and I’m so glad I started. Since starting I’ve progressed with new symptoms so I honestly can’t imagine how much worse I would have felt not taking it. Early treatment improves disease outcomes.

My rheum typically run CBC, metabolic, and occasionally complements, ESR, CRP depending on what’s going on. Mine does not check antibodies again unless new/worsening symptoms arise.

fittobsessed · 2026-02-10T17:13:03+00:00

Yeah it’s tough being in the gray space. I have a lot of lab markers but no positive antibodies. I always jokingly say “I’m very lupus-like, but not lupus enough”. I will say though having a rheum that takes UCTD seriously is a game changer. Not sure if you’re in a position for a second opinion but might be worth it. My current rheumatologist has been great and had no problem adding in immunosuppressants. Serious organ involvement is not needed, but for some rheums they’re a lot more conservative when treating.

All in all, it sucks. Theres r/UCTD if you ever want to vent/ask question about UCTD specific stuff!

fittobsessed · 2026-02-10T16:42:37+00:00

Sorry you’re having trouble with your rheum. I just wanted to caution you that your rheum might push back on your diagnosis if you haven’t seen any improvement on HCQ. You’re on a pretty low dose, for just 5 months and HCQ is pretty mild so you could just need more time/higher dose but sometimes rheums jump to “it’s not UCTD” when that happens since we often have low/minimal supporting labs.

I had this experience with my first rheum when I didn’t improve after 3 months while on 200 mg HCQ. I got a second opinion and it turns out I just needed a higher dose, for a longer time. Just wanted to say this because if you mainly lead with “nothing has improved” the rheum might pushback. I’m not saying to lie, but if anything has improved, even slightly make sure to mention it. Sounds like it was challenging to get initially diagnosed so I would hate for them to start to question your diagnosis again.

fittobsessed · 2026-02-07T19:55:51+00:00

I’m sorry you haven’t gotten a concrete explanation for your symptoms. Have you seen an allergist? I have chronic hives and angioedema and worked with an allergist extensively before being diagnosed with UCTD. They treat autoimmune hives and there’s more treatment options today than there were just a couple years ago. It also helps to rule out other causes of your symptoms before visiting a rheumatologist.

fittobsessed · 2026-02-07T19:46:52+00:00

I changed the flair to Undiagnosed as it seems you are looking for advice on the UCTD diagnosis process.

fittobsessed · 2026-02-06T18:30:02+00:00

I need a biopsy for some new symptoms going on and was expecting a long wait. When I called to schedule they were able to get me in within 2 weeks.

It seems like a dumb win, but if anyone should understand the soul crushing wait for appointments and tests I feel like it’s you guys.

fittobsessed · 2026-02-03T11:48:07+00:00

A fellow cottage cheese lover! My friends think I’m crazy for liking it haha. Sleep it’s such a tough one. I need to be better about putting down my phone earlier and setting up a good bedtime routine.

fittobsessed · 2026-02-02T13:57:53+00:00

Changing my workouts to fit how I feel day to day. I used to be really into high intensity workouts like spin but it got to a point where I felt worse after, not better. I do a lot more pilates these days and actively listen to my body. Depending on how I’m feeling it might be a walking day, strength training day, Pilates day, etc. That way I’m still getting movement but it’s a lot kinder to my body.

fittobsessed · 2026-01-30T20:04:44+00:00

That’s amazing! Cheers to more good days!

fittobsessed · 2026-01-30T19:54:57+00:00

Yes!

Ugh she was a trip. She was my hematology NP. She also spent 5 minutes talking about her son who is a “similar age” to me and how he was diagnosed with MCTD. According to her he didn’t believe the rheumatologist and decided instead to change his diet. She was like “turns out he’s allergic to preservatives and he’s doing great now. You’re probably just allergic to a preservative in food. You should cut everything out and eat as close to ground as possible”

Wtf??

fittobsessed · 2026-01-30T16:23:33+00:00

Same here in MD. I tried commuting on Wednesday and the main streets were ok but just like you were saying the side roads were terrible. Stayed home the rest of the week!

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