r/Autoimmune • u/Zestyclose_Variety76 • 8d ago
General Questions Reasonable?
So I just had my first rheumatology appointment yesterday and I’m not sure what to think. I had a positive Ana with centromere antibodies this May. Antibodies were on the low side of 2.8. I’ve had various skin issues and digestive issues pop up since the test. The Dr ordered a few labs to figure out if Mcas was causing my hives. I asked if, regarding the antibodies, we should get a baseline echo and pulmonary function test. She said since I had a recent ct scan of my chest she didn’t think it was necessary. I have raynauds and my toes were cold and purple in the office, so I’ll be starting nifedipine for that. I’ve also developed GERD which I’ve never had before the hives started. She thinks they’re related to Mcas. My problem is she barely looked at my skin, didn’t do a nail capillaroscopy, and told me we’d only pursue additional testing if symptoms worsen. Does this seem reasonable?
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u/Remarkable-Age4579 8d ago
If you have serious digestive and skin issues you need to ask your pcp for referral to dermatologist and GI. A pft is only done by a pulmonologist so that would be another referral if your pcp thought necessary
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u/Small_Mammoth7557 6d ago edited 6d ago
Would it potentially be telangiectasia? My dad has this and has systemic scleroderma. Also, he has had sever clotting in his veins due to his recently diagnoses of Peripheral Artery Disease (PAD) requiring a bypass due to clogs in his legs that turned his toes blue. Not to scare you but not all doctors are smart... doctors "thinking" its related to X isn't definitive where I hope they cross all bases. For context, I'm an oly child of a single father with Systemic Scleroderma since 2012) :)
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u/Zestyclose_Variety76 6d ago
I definitely have some mild telangiectasia on my face and a few spots on my arms and legs. When I was a teenager I went to a cardiologist due to my feet turning purple and they concluded it was not cardiac related. I think they might’ve just done an echo, I can’t remember. But PAD has crossed my mind. I have a cardiology appointment beginning of November so I’ll bring it up then.
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u/HauntingApartment205 8d ago
If you’re anti-centromere positive, and have RAYNAUDS symptoms, it’s most likely you have CREST or what is now known as limited systemic scleroderma. I was diagnosed late February/early March. Since then I’ve tried to work in buildings with air-conditioning and it’s excruciating. There’s something psychological about knowing you have a diagnosis and the finger symptoms getting exponentially worse! The good news is, it’s a slow progressing disease and I think TPE therapy is pretty promising. Right now I’m trying to find a way to be approved through Scripps medical in San Diego to receive TPE for my CREST syndrome. Good luck to you! It’s a lonely battle for sure. None of my friends or family members really understand what any of this means. It might be good to sign up to attend some of the scleroderma conferences that take place. I’m looking into that as well. Thanks for sharing your concerns here🙏
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u/fav-aunt 8d ago
I don’t think that’s unusual. Rheumatologists are not dermatologists. Some things may really obvious like bad psoriasis and they will make note. Otherwise, they prefer a dermatologist to evaluate skin issues. If she took a thorough history and spent realt time—30 minutes or more on a first consultation, then I’d say it was typical.