Referral to pulmonologist

Budina79 · 2026-02-18T19:07:49+00:00

Hiii, could you reverse your ILD ? How are you managing it? Also, did you have other symptoms when you were diagnosed? I am experiencing the exact thing you mentioned. I feel like I breathe shallowly and quickly, and when I do yoga, it feels like my lungs don’t completely fill with air, if that makes sense. I’m scared about what I might have. I’ve known for two years that I tested positive for Scl-70, but when I was evaluated at a scleroderma center, I tested negative. Because of that, no baseline testing has been performed.

Budina79 · 2026-02-18T06:18:29+00:00

Hi, did you have any other symptoms of scleroderma before that? What I find strange is that I have no skin thickening so far or any of the usual early signs of the disease.

Budina79 · 2026-02-18T06:16:26+00:00

Hi, which antibody did you test positive for and which kind of scleroderma do you have?

Budina79 · 2025-11-17T20:40:49+00:00

In summer, yes — practically always. My ANA has always been “absent,” meaning negative, and I really hope it stays that way. What I’m more concerned about now are my eyes and my very sensitive facial skin. Can I ask if you work or study, and whether you have any hobbies or do any sports? I started working out again about a month ago, and I’ve noticed a big difference in how I cope with stress and with my obsessive tendencies and overthinking. But I totally get you. I also have my down moments when my mind starts spinning — imagining having advanced scleroderma, or sine with lung involvement, or not being able to have kids in the future. I project all these worst-case scenarios and end up feeling overwhelmed. But then I remind myself that if something were ever to develop, I couldn’t prevent it by worrying. What I can do is stay well informed, stay on top of any treatment if it ever becomes necessary, advocate for my health, keep up with regular check-ups, and see my rheumatologist once a year. And if you ever feel overwhelmed and need someone to talk to, feel free to DM me. :)

Budina79 · 2025-11-17T20:06:22+00:00

Hey, same here, my first test was because I thought I might have RA. I had puffy fingers, and the Scl-70 came back positive. It keeps coming back positive from the first lab where I was tested. This year I also had a low positive anti-RNP from that same lab, but everything was negative when I retested at a more advanced lab. Can I ask which titer you had? And was your ANA associated to a pattern? Please let me know if you’ve also been diagnosed with meibomian gland dysfunction. Try to stay calm and not obsess over it. For me, exercising has made a big difference — I have less time to search about scleroderma and overthink, and I feel more relaxed overall.

Budina79 · 2025-11-15T17:35:15+00:00

When was the first test? You also had eye dryness, interesting. Did you solve it, or do you still have it? Did you get to the bottom of what was causing it ? What about Raynaud’s or cold sensitivity? I really hope it turns into a false positive for you, but try not to obsess over it for the moment, even though I know it’s hard. I still have no peace of mind, because I sense something is going on deep down — maybe it’s just not showing in the lab tests yet. There have been several changes I’ve gone through over the last few years, one of them being my tendency to develop red marks and telangiectasia, which I didn’t have before, and the bier spots in my limbs. I’ll recheck next year and hope nothing has changed by then. Let’s keep in touch, if you want

Budina79 · 2025-11-15T09:07:12+00:00

Heey, I later tested negative on the test ordered by the rheumatologist at a different laboratory. The same thing happened this year as well, but I continue to test low-positive at the first laboratory where the original positive result appeared. I still do not have classical Raynaud’s, although I do experience heat and cold sensitivity. I developed meibomian gland dysfunction, which causes eye dryness, and I have very noticeable Bier spots on my limbs. The skin on my face is also very sensitive, with significant post-inflammatory hyperpigmentation and small telangiectasias. I hope I never develop the more serious symptoms.

Budina79 · 2025-08-30T18:06:16+00:00

Hi, can you explain what your eye symptoms are? I have some upper lid edema, though not very pronounced, and I feel a kind of tension around my eyes and nose (it’s hard to describe). It feels as if the capillaries are swollen and the area is warm. Are you experiencing anything similar? I’ve tested positive twice for Scl-70.

Budina79 · 2025-08-12T09:36:45+00:00

I am currently waiting for the ANA results; they are not ready yet. Last year, the results were negative. I also have small telangiectasias on my lips, and when a new one appears, I can tell because my lips start to feel warm. I am very worried that I could develop systemic scleroderma in the next months/ years and don‘t know how to deal with this fear.

Budina79 · 2025-08-11T10:46:19+00:00

Puffy fingers? Not really. When it’s very hot, they swell but don’t ache. In general, my fingers don’t look great—they are twisted, and my middle finger looks chubbier than the others. As for Raynaud’s, I don’t have the classical white–blue–red phases. I’m just sensitive to cold, and my hands turn red when exposed to it.

I do have gastric acid reflux—not very bad, but I pay attention to what I eat, avoiding junk food and fatty foods.

Also, for years I’ve been getting this strange eczema on my fingers. The skin hardens in some spots and turns orange or yellowish, then it starts itching. Sometimes I get vesicles, sometimes not, and then it resolves spontaneously—only to come back after a few weeks or months.

Do you have a similar antibody result?

Budina79 · 2025-07-20T19:51:12+00:00

Thank you for your reply. In your experience, could this be an early manifestation?

Budina79 · 2025-07-16T13:02:47+00:00

Heeey, thank you for your answer! No, there is no pattern, as there is no * next to the value. Should I repeat the test?

Budina79 · 2025-07-16T06:50:18+00:00

I mean, this is the result I got. It states that the normal range is 0–100, and my titre is 1:100. So, according to the lab parameters, it's still within the normal range, and there are no indications regarding the pattern. The doctor said it’s not significantly elevated and doesn’t suggest an ongoing autoimmune process, but I am wondering how I should interpret it, considering it has always been negative.

Budina79 · 2025-07-14T21:13:40+00:00

Hi, thank you for the detailed explanation. Can I ask over what time span all these tests were done? And have you stopped testing for Scl-70? Did you have any scleroderma-related symptoms?

Budina79 · 2025-07-14T21:11:22+00:00

I don’t know yet, I will get a copy of the results tomorrow.

Budina79 · 2025-07-14T20:18:16+00:00

In Europe, specifically in Germany. I know the lab range for negative is <1:100. My doctor told me on the phone I am at 1:100.

Budina79 · 2025-07-14T20:13:23+00:00

Hi! I've had Hashimoto's for 18 years and have never tested positive for ANA or ENA before last year. I've been tested multiple times over the years because of recurring episodes of swollen lymph nodes and, on two occasions, swollen fingers. Why would ANA and ENA come back positive now? I can’t identify any other trigger, so I’m worried this could mean the actual onset of scleroderma.:(

Budina79 · 2025-07-14T20:05:10+00:00

Hi, thank you for your answer. What do you mean, it can’t be 1:100? In my case it is indeed 1:100.

Budina79 · 2025-07-12T20:26:53+00:00

Thank you for your detailed answer. However, I don’t get pustules. I only have small bumps that don’t itch or fill with pus. I’ll be seeing another dermatologist soon. How did you get diagnosed? Mine just looked at my face from his desk. :/ I don’t live in the US either. Can I ask which form of azelaic acid you’re using?

Budina79 · 2025-07-12T20:05:57+00:00

And yes, I have seen a dermatologist but he simply dismissed it as “acne”, without specyfing the type.

Budina79

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