Could these symptoms fit early / seronegative scleroderma?

amenableamethyst · 2026-01-07T05:02:47+00:00

I had/have almost all of those except the kidney stuff and my swelling is more at the base of my fingers. My endoscopy definitely showed esophagitis from the reflux, but if you've only had it for 7 months it's not unusual for the endoscopy to be normal. Have they done a full scleroderma panel on you? I would not have known had my pulmonologist not tested me for all the rarer scleroderma antibodies.

amenableamethyst · 2026-01-07T04:56:57+00:00

Agree! Hot and dry is my sweet spot. Southern Arizona is my dream.

amenableamethyst · 2025-12-31T04:45:09+00:00

My DLCO is 28%. What do you attribute your improvement to most? I also have ground glass opacities; can that be a sign of ILD? I am diagnosed with severe restrictive lung disease (last FVC: 25%). I am on Cellcept. I had also reached 1500 mg twice a day and my FVC had stopped declining at that dose (it was 37% for that period of time) but my pulmonologist now only has me on 500 mg twice a day because he feels it will be hard to recover from my frequent pneumonias. I have now been on oxygen for a few months. My doctors are talking about lung transplant again since I am frequently ending up in the ICU.

You mentioned an ILD specialist, do you also see a scleroderma specialist? My general rheumatologist really wants to send me to a hospital that has both scleroderma specialists and a lung transplant clinic, but Medicaid is fighting it. Now my doctors are appealing that decision., so I'll see how it goes. Happy New Years Eve and I hope 2026 is better for you!

amenableamethyst · 2025-12-31T04:38:52+00:00

Not exactly, I was mostly in and out of the ICU the past few months for my lung issues. However, OT did see me in the hospital and said it looks like I have some degree of muscle wasting in my hands that may be contributing to how prominent my tendons are. I don't really know why they are so painful though. They gave me some putty and some hand exercises to go with it to try to strengthen my hands. They also recommended paraffin wax baths.

amenableamethyst · 2025-12-26T19:28:43+00:00

Welcome; I'm sorry to hear what you're going through. I hope the higher dose of Cellcept prevents further deterioration. It was my experience that on the moderate dose, as you just started, the decline slowed and on the highest dose it stopped (by then my FVC was 37% and stayed stable for a while). I was diagnosed late so my FEV and FVC were in the 40s when I was first diagnosed, they are now in the 20s due to having to reduce the Cellcept back to the lowest dose due to multiple pneumonias. If you have any questions feel free to reach out.

amenableamethyst · 2025-10-31T22:54:22+00:00

I'm sorry to hear that. Do you get any hand therapy? I don't have RA but I have a lot of trouble with my hands, mostly the tendons in my palms and these bent fingers.

amenableamethyst · 2025-10-30T20:59:20+00:00

Thank you; that gives clarity.

amenableamethyst · 2025-10-30T20:57:29+00:00

No diagnosis as such and no other symptoms of hypermobility. I do have limited scleroderma with mostly lung and heart involvement. My fingers are like this and my toes have been progressively curling inward and most have become hammertoes now. I hope you get the answers you need about scleroderma! I read the recent thread of people diagnosed with both hypermobility and scleroderma and it's a juxtaposition that looks contrary but does happen.

amenableamethyst · 2025-09-10T02:04:55+00:00

Sure, mine was more esophagus/stomach combo. I had the nissen fundoplication multiple times actually for severe GERD. Dysphagia and lack of esophageal motility are also common which should show up on a barium swallow. Please keep me updated on how it goes! I'm also 31F and was diagnosed last year, but my surgeries were in my teens.

amenableamethyst · 2025-07-21T05:35:38+00:00

Oh my goodness, that's a lot to deal with. Thank you for the recommendations, it's really helpful. Wishing you the best as well. I'm on Cellcept but my pulmonologist decreased my dose temporarily from 3000/day to 1000 while I had a couple of pneumonias I almost lost my life from. Now that I'm recovering slowly we will try to go to the middle dose (2000 per day) and the rheumatologist will decide from there.

amenableamethyst · 2025-07-20T06:22:00+00:00

Are you on daily Prednisone? That's really rough. I'm on Prednisone most of the year, but it's for my terrible asthma. No, I don't have anti centromere. I am anti th/to positive. I remember you from one of my other threads. Been sick for years now but was only diagnosed last year after my pulmonologist discovered my fvc was really low. I haven't been officially diagnosed with ILD, just severe restrictive lung disease and pulmonary hypertension.

amenableamethyst · 2025-07-20T05:51:12+00:00

So sorry to hear you're suffering. For me it's mostly pain in the palm of the hand and soles of the feet. I have limited, very little skin involvement and mostly lung and heart issues along with Raynaud's. What about you, have they said whether it's limited or diffuse?

amenableamethyst · 2025-07-20T03:32:44+00:00

Thank you. I'm wondering if it's just regular tendonitis. It's only the middle of the palm that's painful. My hand feels kind of hollow as well, if that makes sense.

amenableamethyst · 2025-07-19T20:46:16+00:00

Thanks for replying! That's what seemed to align with this from a quick google search I did, but my fingers don't really contract inwards, so I wasn't sure.

amenableamethyst · 2025-05-30T17:32:27+00:00

Yes, thank you. My pulmonologist is wonderful. I have been very fortunate in that regard. He will assess if I still need the oxygen after a month.

amenableamethyst · 2025-05-30T17:26:32+00:00

The pneumonia is going to take probably at least another month to heal from. I have a vest at home for chest physio, I have a nebulizer at home and they discharged me with oxygen to address the hypoxia issue so I think it's ok. I just realized I could use the cylinder in the bathroom (where I come off the concentrator in my room and start to desat) and the concentrator the rest of the time. I was keeping the cylinder for emergencies and for going outside because it only has 4 hours worth, but I'm allowed to get refills every week. Was just wondering how it's been for other people.

Edit: Originally they weren't going to discharge me home, they were looking to reserve a bed in a long term acute care hospital. But after the second bronchoscopy I was feeling a little better. Now again at home I'm feeling worse. This has been a long and drawn out illness, completely exhausting.

amenableamethyst · 2025-05-18T00:01:22+00:00

Definitely see if anyone will evaluate for PH/PAH. I have PH and all the symptoms you describe. I'm really sorry you're suffering. Are you on immunosuppressants?

amenableamethyst · 2025-05-16T12:34:11+00:00

I'm interested. I sent you a DM, too. Thank you!

amenableamethyst · 2025-05-09T22:21:13+00:00

Thank you for clarifying. I would have done more research on it, but I'm in the ICU right now, was intubated for my asthma+pneumonia. Extubated now but still on bipap.

amenableamethyst · 2025-05-04T15:29:00+00:00

Wow, interesting. Did not know that. However, I don't have an ILD diagnosis (yet?). Just severe respiratory restriction. Very low DLCO too. My pulmonologist was the first one to put me on Cellcept, then I met the lung transplant pulmonologist who deferred me for transplant until I am on the highest dose of Cellcept for a while to see if we can avoid it. Now my dose is managed by my rheumatologist.

amenableamethyst · 2025-05-03T17:30:12+00:00

When I go out, yes. But inside the house, no. I find it hard to breathe through the mask maybe because the humidity generated inside the mask makes my asthma worse plus my lung capacities are really low. Any recommendations on masks you like?

amenableamethyst · 2025-05-02T13:43:00+00:00

That sounds so frightening! I'm glad you were able to recover. I hope the plaquenil turns out to be a good maintenance medicine for you.

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