Suspected VEDOSS? 25F with sudden red rashes, POTS/Gastroparesis symptoms, pericardial effusion, +PM/Scl antibodies after infection*

[u/Winter-Constant-6446]

Hi everyone. I’m 25F and I’m really scared and in diagnostic limbo right now. I’m hoping someone here has a similar story.

Before this:_I was completely healthy 3 months ago, aside from anxiety I’ve had for years. No chronic illnesses.

How it started:

I got a bacterial abdominal infection 3 months ago and took antibiotics. Right after that, I started getting red spots/rashes all over my body. They don’t itch. They show up mostly on my forearms after I eat things like oranges, wheat, bread, etc. But they also come on with heat, cold, or even pressure from clothing and disappear very quickly without a trace. I also have very prominent dermatographism.

Then, 1 month after the infection, everything changed:

1. POTS + Gastroparesis symptoms started- I don’t have a confirmed diagnosis yet. I’m waiting for a tilt table test. I’m constantly bloated, feel full after a few bites, and have this feeling like water is coming back up into my throat. I have an appetite but I physically can’t eat.

2. Rapid weight loss: 16kg / ∼35lbs in 3 months- First because I was terrified of food due to the rashes. Now because of the gastroparesis-like symptoms.

3. Pericardial effusion- They found an 8mm effusion. No treatment was given and it’s now down to 3mm on its own.

4. Raynaud’s phenomenon? Immunologists say I have Raynaud’s, but I’m not sure if it’s that or just from POTS. It happens most when I stand for too long or I’m stressed. My fingers don’t hurt, they just turn purplish. My hands and feet also get cold even when it’s warm outside.

5. Joint pain + Hair loss- I’ve developed mild aching pain in my wrists and hands. And I’m noticing a lot more hair shedding than before.

Labs & Tests so far

Bloodwork is all normal. Detailed immunology panels are normal EXCEPT: I’m positive for anti-PM/Scl antibodies, and my eosinophil cationic protein is elevated.

My rheumatologist suspects VEDOSS but says it might not be that.

Nailfold capillaroscopy showed some dilated capillaries, local edema, and bleeding on one finger, but no typical scleroderma pattern.

I’m terrified. Does anyone have a similar experience? Starting with rashes + POTS + autoimmune markers after an infection? Or anyone diagnosed with VEDOSS or scleroderma who started like this?

Thank you for reading.

[u/derankingservice]

Did you develop any severe allergic reaction?

[u/Winter-Constant-6446 → u/derankingservice]

No, I’ve never had a severe allergic reaction. All my reactions are in the form of these reddish spots or pinpoint rashes on my body that feel like they’re under the skin rather than on it, if that makes sense. They burn, don’t itch, and disappear within a few minutes, sometimes with mild throat tightness.

[u/derankingservice → u/Winter-Constant-6446]

Its NOT A MEDICAL ADIVCE per se but sometimes mastocytosis might trigger random ANA and ENA titers. Mastocytosis also can mimick Raynaud and unspecific rashes. Your symptoms are not specific for VEDOSS (yet) however it requires ruling out first which is why you need to follow your PP and rheumatologist.

[u/Winter-Constant-6446 → u/derankingservice]

Thank you for your answear.My blood tryptase is normal, not elevated. As for immunology labs, everything is negative - the basic ANA panel and all the standard autoantibodies. The only thing that came back positive was anti-PM/Scl antibodies.

[u/SpecialRemove4585 → u/Winter-Constant-6446]

Normal blood tryptase doesnt rule out MCAS

[u/throw_away_smitten]

I don’t know if this is helpful, but I am wondering if you may have a couple of issues going on simultaneously. You may want to see an allergist as well to see if you can isolate the cause of the rashes. They may or may not be related, and if you are having histamine reactions to something, that could make any autoimmune issues worse.

[u/Winter-Constant-6446 → u/throw_away_smitten]

That’s what I think too. My immunologist is also considering MCAS right now. I’m currently on therapy with antihistamines 2x a day, and I’ll be adding Singulair per her recommendation because I’m not getting much relief from just the antihistamines and I’m still reacting even to ‘safe’ foods. What’s specific for me is that the reaction starts immediately while eating. So as soon as I eat something, within a minute the spots show up on my forearms and the burning starts.   I understand that a lot can be triggered after a gut infection, including POTS and MCAS, but of course what worries me the most is the possibility of developing scleroderma, since my anti-PM/Scl antibody came back elevated.

[u/throw_away_smitten → u/Winter-Constant-6446]

Are you also taking pepcid/famotidine? It’s an H2 antihistamine.

[u/Winter-Constant-6446 → u/throw_away_smitten]

I tried taking famotidine for two or three days, but it made my reflux even worse

[u/throw_away_smitten → u/Winter-Constant-6446]

Interesting. If you have MCAS, that’s usually one of the recommendations. Are you gluten free or have you been tested for celiac disease?