Scleroderma

[IfIOnly]

Does anyone have this?

I tested positive for the scl 70 antibodies, which is a scleroderma diagnosis. I don't have any typical symptoms though. Doctor is concerned about lung scarring because of my breathlessness though and is ordering imaging. I'm seriously confused.

I am not surprised there is something autoimmune going on though. My ana was positive, homogeneous, and 1:160. That's high from what I understand.

[TravelingChris]

Yes. Your ana is significant.  Is your doctor a rheumatologist or pulmonologist or ?

I don't have scleroderma but do have lupus, RA, Sjogren's. Ankolysing Spondylitis. Asthma and other autoimmune disease.  

Sci 70 is apparently found in scleroderma patients w lung involvement.

Please get the best care you can.

[Resilient]

Which type of scleroderma?  There's one that is rare and not nearly as debilitating as the other.  I have had friends with both types.  Either way, I am sorry for this news.  It's something to face down.  

[IfIOnly]

15 minutes ago, TravelingChris said:

Yes. Your ana is significant.  Is your doctor a rheumatologist or pulmonologist or ?

I don't have scleroderma but do have lupus, RA, Sjogren's. Ankolysing Spondylitis. Asthma and other autoimmune disease.  

Sci 70 is apparently found in scleroderma patients w lung involvement.

Please get the best care you can.

Thank you. You've got many challenges. 😔

Just my regular doctor ran tests, but she's good about referring when needed. I'm expecting to see a rheumatologist soon. I'll have a telehealth soon with my GP to go over test results in more detail.

After looking at pics online, I'm wondering about all these white spots on my arms. Is this normal? Lighting is horrible, but you can get the gist. Some are larger than others. White spots are lighter than skin and of course freckles.

 

Edited March 24, 2021 by IfIOnly

[IfIOnly]

7 minutes ago, Resilient said:

Which type of scleroderma?  There's one that is rare and not nearly as debilitating as the other.  I have had friends with both types.  Either way, I am sorry for this news.  It's something to face down.  

I don't know yet. My doctor uploaded test results online and sent me a message with a bit of info and set up a telehealth appt. Thanks for the good info❤️

[TravelingChris]

The photos seem normal to me.  But the test you had positive was not about skin issues but about lung issues w scleroderma.  

I don't know if I ever had thst same antibody tested snd I fi know U didnt have it before I had my misdiagnosis of one of the same lung complications thst csn affect both sclerodrms and Sjogren's patients snd maybe othet connective tissue AI diseases too.  (The misdiagnosis was the CATSCAN was faulty in some way and showed what apperead to be scarring in my lungs).    I do not hsve scarring on my lungs, but I do have asthms thst appears strange to doctors because it tests partly like asthma and partly COPD.  Only 2 years ago I found out why.  My AS affected the spine rib connections and I can't expand my lungs as expected but not because of COPD

I would urge you to ask your doctor also for a referral to s pulmonologist.  They do breathing tests that a regular doctor does not have in their office and generally manage the lung manifestations of any AI disease along w rheumatologist managing the overall condition.  For example, my rheumatologist has me going to a neurologist to manage all my neurological manifestations of my AI diseases.  Any major issues w an AI disease(s) means another specialist.  I have so, so, so many and keep adding new specialists too.

[IfIOnly]

4 minutes ago, TravelingChris said:

The photos seem normal to me.  But the test you had positive was not about skin issues but about lung issues w scleroderma.  

I don't know if I ever had thst same antibody tested snd I fi know U didnt have it before I had my misdiagnosis of one of the same lung complications thst csn affect both sclerodrms and Sjogren's patients snd maybe othet connective tissue AI diseases too.  (The misdiagnosis was the CATSCAN was faulty in some way and showed what apperead to be scarring in my lungs).    I do not hsve scarring on my lungs, but I do have asthms thst appears strange to doctors because it tests partly like asthma and partly COPD.  Only 2 years ago I found out why.  My AS affected the spine rib connections and I can't expand my lungs as expected but not because of COPD

I would urge you to ask your doctor also for a referral to s pulmonologist.  They do breathing tests that a regular doctor does not have in their office and generally manage the lung manifestations of any AI disease along w rheumatologist managing the overall condition.  For example, my rheumatologist has me going to a neurologist to manage all my neurological manifestations of my AI diseases.  Any major issues w an AI disease(s) means another specialist.  I have so, so, so many and keep adding new specialists too.

Oh, dear. I did not realize that specific antibody test was related to lungs. Well that makes sense. We've been trying to find out the reason for my breathlessness and huffing and puffing during and out if breath for several minutes still after going up stairs. Oh, gosh. 

Thanks for the great and unfortunately btdt advice. ❤️

[Shoeless]

My step-mother had it. She had the type that mostly impacts the lungs.  Definitely get a referral to a pulmonologist.  This isn't something a GP will be able to manage.  My stepmother had a lot of other health issues in addition to the scleroderma, and that likely made her case more complicated than yours will hopefully be. She found it helpful to keep a notebook for when she spoke with doctors and nurses on the phone: name of who she talked to, date, what they said, etc. Her first hint that something was wrong was being out of breath when she had not been before. It got dismissed as allergies and being all in her head at first 🙄, so it's good that your doctor ran some labs and seems to be listening. 

I'm sorry; the diagnosis is a lot to take in. (((hug)))

[IfIOnly]

10 hours ago, MissLemon said:

My step-mother had it. She had the type that mostly impacts the lungs.  Definitely get a referral to a pulmonologist.  This isn't something a GP will be able to manage.  My stepmother had a lot of other health issues in addition to the scleroderma, and that likely made her case more complicated than yours will hopefully be. She found it helpful to keep a notebook for when she spoke with doctors and nurses on the phone: name of who she talked to, date, what they said, etc. Her first hint that something was wrong was being out of breath when she had not been before. It got dismissed as allergies and being all in her head at first 🙄, so it's good that your doctor ran some labs and seems to be listening. 

I'm sorry; the diagnosis is a lot to take in. (((hug)))

Thank you for sharing. Yes, thankful for a doctor who is taking me and my symptoms seriously. 

I joined a Facebook group and asked, and you can have no skin issues but mostly lung and other organ issues. It's called sine scleroderma. I guess kidneys are something to especially look at as well. I have a cardiogram recently (POTS protocol), and everything looked great. So that's good news.

[Shoeless]

6 hours ago, IfIOnly said:

Thank you for sharing. Yes, thankful for a doctor who is taking me and my symptoms seriously. 

I joined a Facebook group and asked, and you can have no skin issues but mostly lung and other organ issues. It's called sine scleroderma. I guess kidneys are something to especially look at as well. I have a cardiogram recently (POTS protocol), and everything looked great. So that's good news.

My stepmother had only lung and digestive issues, but no significant skin issues. She developed Raynaud's phenomenon in her hands, but that may or may not have been from the scleroderma.  She actually looked a bit younger than typical for someone her age due to the scleroderma. Her skin didn't wrinkle as much after the diagnosis; I guess she got just enough extra collagen to plump up aging skin, but not enough to do any skin damage! 

She was diagnosed over 25 years ago, so I am sure they've come up with some better treatments and management options in that time. 

[ktgrok]

The white spots could be tinnea versicolor. Common in humid, hot places like Florida. We call it Florida Fungus here. I've had it many times, never bothered to actually treat it, and it just goes away. Mine was like yours, not bad. Some people get bigger patches worth treating. Tends to show up more whn you get some sun/pigment. 

(or could be nothing like that, lol)