I was just diagnoses with interstitial lung disease. Does anyone else have this?
Roughly 3/4 of SS patients will test positive for ILD when pulmonary function tests are preformed. It almost always occurs in anti-Ro antibody positive patients and presents early in the course of the disease. Most are asymtomatic and rarely does it progress In many instances it actually corrects itself.
That of course is if its from SS and not smoking, infgection, occupational hazards (asbestos, silica, etc.) or spending to much time at an oxygen bar. Then everything is subject to change. This study was pretty conclusive and has been supported numerous times by other studies. Progressive ILD with scarring is rare enough that not much consideration is given to it unless it happens. The above study has a great bibliography if you want to learn more.
tj1 said:
Roughly 3/4 of SS patients will test positive for ILD when pulmonary function tests are preformed. It almost always occurs in anti-Ro antibody positive patients and presents early in the course of the disease. Most are asymtomatic and rarely does it progress In many instances it actually corrects itself.
That of course is if its from SS and not smoking, infgection, occupational hazards (asbestos, silica, etc.) or spending to much time at an oxygen bar. Then everything is subject to change. This study was pretty conclusive and has been supported numerous times by other studies. Progressive ILD with scarring is rare enough that not much consideration is given to it unless it happens. The above study has a great bibliography if you want to learn more.
My diagnosis was confirmed by a CT scan and well as physical exam and pulmonary function tests. And yes, my symptoms are significant. Other causes have been ruled out. The frustrating thing is that there is no treatment that can help. I am to follow up every 6 to 12 months to check whether the disease if progressing. FRUSTRATING! Another challenge to deal with no end in sight.
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I think I would be looking for a second opinion on that. Mayo isn't exactly the best for this sort of thing. Jeffery Chapman at Cleveland Clinic is likely the leading expert in the world has developed a protocol using cyclophosphamide, with tacrolimus is emerging as a salvage agent. Continued treatment with mycophenolate, is usually necessary. The protocol is used in many medical centers around the country. There are a number of evidence based studies out there. The stronger pulmonology programs have recognized ILD coming from SS in particular as a seperate disorder. I don't know what showed up on your physical exam but generally they look fo thickened skin and painful fingertip fissures "mechanics hands"; 50% have Jo-1 antibodies on antinuclear antibody testing. Lungstudies usually show fibrotic NSIP or organizing pneumonia.
I pulled this article for you. Its a bit windy, but scroll down to the systemic and connective tissue disease section
Snowflake said:
My diagnosis was confirmed by a CT scan and well as physical exam and pulmonary function tests. And yes, my symptoms are significant. Other causes have been ruled out. The frustrating thing is that there is no treatment that can help. I am to follow up every 6 to 12 months to check whether the disease if progressing. FRUSTRATING! Another challenge to deal with no end in sight.
I have issues with my lungs as well but no specific Dx. It feels as though I am always fighting for air even when I'm doing nothing. My chest X-rays appear to be negative, that's what I'm told anyway, and my O2 sats are always in the low to mid 90s, in other words normal.
I was a smoker but quit a couple of years ago. At first I figured it was just a result of having smoked and something I did to myself but once I was diagnosed with SS I learned it could be from the SS and not just from having been a smoker. I'll have to bring this up to my Rheumatologist next week when I see him.
Butler said:
I have issues with my lungs as well but no specific Dx. It feels as though I am always fighting for air even when I'm doing nothing. My chest X-rays appear to be negative, that's what I'm told anyway, and my O2 sats are always in the low to mid 90s, in other words normal.
I was a smoker but quit a couple of years ago. At first I figured it was just a result of having smoked and something I did to myself but once I was diagnosed with SS I learned it could be from the SS and not just from having been a smoker. I'll have to bring this up to my Rheumatologist next week when I see him.
I was misdiagnoses as having asthma. It took a CT by a GOOD pulmonologist along with pulmonary function tests to get the right diagnosis. Good luck. Your rheumatologist probably will not know much about this. I went to three and they missed it. So a good pulmonologist was the answer for me. By the way, that took two to get the right diagnosis.
Good luck.
Snowflake, I see your post is from way back in April. How are you doing now? I also have ILD.
I don't know if I have Interstitial lung disease yet, but the docs saw something on my lungs and I'm going in for another
discussion next month. What is this disease (symptoms?).
ILD is a general "umbrella" that covers 100 different lung diseases which vary greatly in severity and their effect on the lungs. Please address your question to your doctor s he can address your Individual condition specifically. Be aware that there is a lot of frightening information out there that hopefully does not apply to you personally. Shortness of breath and coughing are two of the most common symptoms.
Dragonfly,
thank you for your reply. I see my Dr. next month and I will discuss this further with him.
I agree with the entry by dragonfly. There are a variety of tests which can be run. Please be proactive and ASK A LOT of QUESTIONS such as why is this test being run? What are you ruling out by taking this test? When will I know the results? I have found with medicine now you really need to be your own advocate and ask many questions and not assume. I wish you the best!
Snowflake,
Thank you for your input concerning interstitial lung disease. I see my RH. doctor next month and I will be sure to
ask a lot of questions about any tests. I wish you the best as well.