New to community, need answers.......

6 posts in this topic


I'm newly diagnosed with scleroderma and systemic lupus. I've been hypothyroid for about 10 years now since having my thyroid removed. I've been undiagnosed, rediagnosed for years. Now that damage has set in they've decided to label my disease(s).


Most recently I was put on oxygen because despite the fact I have no sleep apnoea I have low oxygen sats at night. While visiting a pulmonologist he noted my sats were dipping in the day. I failed miserably on my pulmonary function test the other day but during a stress test today my oxygen was relatively normal.


What is going on with that? Is that common with scleroderma? What prompted my rheumatologist to send me to the pulmonologist was the fact I have low o2 nightly and constant chest pressure and tightness. I had a normal echo.


I'm having a right heart cath. on Tuesday and a cat. scan with contrast. Maybe I'm looking for comfort. Is it a positive sign that my oxygen levels were decent today or does that not necessarily mean anything? Really stressing here.


I'm a mom of three kids and have had to leave my job because of this. I have days I can barely move and I'm only 33.

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Hi Laurel,


Welcome to Sclero Forums! I'm sorry you have lupus and scleroderma, and have had such a belated diagnosis of both. All of the lung tests measure different factors and aspects of lung disease, which is why you may fail some but pass others. What matters is the combination of all your tests, taken together, and also the patterns that they exhibit, over time.


It's pleasant that your oxygen levels were good today, but that is only one small piece of the picture. It doesn't mean that you don't have lung problems. The right heart catheterization is the more reliable of some of the tests you have been having recently; for example, people can have a normal echo but still have heart/lung issues. They are probably doing it so they have complete baseline testing for you.


Oddly enough, some people have lower oxygen sats when they are at rest; and other people have lower sats when they are exercising. Just because we'd logically think low sats at rest would therefore always mean even worse sats when exercising, doesn't necessarily make it so! Therefore, although you may have feared that the test was showing maybe you weren't as ill as you know for a fact you are, in reality it will probably just be confirming the type of lung disease your doctors already suspect you have.


Thus, no worries, at least about that aspect, okay? We're here for you, and very glad that you have joined us!



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hi Walkerlaurel1,


Welcome to these forums!!


I'm sorry to hear that you've been diagnosed with Scleroderma and Lupus. I can understand how worried you must be feeling as I have interstitial lung disease and I've included a link to our medical page on Lung involvement to give you some more information. Before I was first diagnosed I had a barrage of different lung tests to actually determine the type of lung involvement I had and in fact at the time I was very fit, so even at my very worse my lung volumes were surprising high; however, my consultants did take that into account with all the details of my lung and blood tests plus the symptoms I was experiencing in order to confirm the diagnosis.


As Shelley has said, the right heart catheterisation is a more reliable way of determining whether you have any heart/ lung problems such as Pulmonary Hypertension which is probably why your pulmonologist has requested the tests.


I'm very pleased that you've found our forums and joined our community where you will find a wealth of help and support. Please do post when you've had your right heart catherisation and CAT scan on Tuesday and let us know how you get on.




Kind regards,

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Walkerlaurel1


Let me add my WARM welcome to you. Everyone is so completely different with autoimmune diseases that there is no "normal". Getting the right heart catch is the right thing to do at this time. I think you'll find some answers in that alone.

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Welcome Walkerlaurel1,

Did you have your tests yet and are there any more pieces of the puzzle to put together now?


I feel for you being on oxygen. I found that very frustrating although helpful. I have been on and off of it several times during past 8 years. I hope your oxygen provider qualifies you for a portable machine that makes going out for short periods of time easier.


Please let us know how you are doing.



ISN Artist

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Hello Walkerlaurel1


Welcome to the forums although sorry it's both scleroderma and lupus that brings you here.


It's a good thing that you're having all the tests even though it doesn't feel like it at the time. I am hoping for you that the results are no heart/lung/internal involvement but even if there is most everything has a treatment these days, no cure I know but treatment is better than nothing.


Let us know how your tests go and keep posting.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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