Mild ground glass opacities and blood markers for autoimmune disease

It’s good to hear you are all being strong . I live in Goa, India where docs are not used to being asked questions and find the patient ‘tiresome’.

I was diagnosed via CT scan in the 3rd week of April after two years of a dry cough. I sought treatment from a Pulmologist in Goa who was so busy with COVID patients and getting media attention for his work in this pandemic that he could not spare me time after the first consultation. He passed me on to a Rheumotologist doctor friend after blood tests detected that I had Connective tissue disease and also early Rheumatoid arthritis apart from ILD with fibrosis . Apparently the tests detected that I also had contracted COVID sometime earlier ( and did not know it) which further worsened my lungs.
The Pulmologist informed me that he would decide my treatment jointly with the Rheumotologist and after the Rheumotologist had seen and treated me I was to return to the Pulmologist for further treatment. However, sadly he could not spare me time for an appointment later and I was stuck with just the Rheumotologist treatment for suppressing my immune system which he said would work ‘just fine’ to treat my lungs as well.

But I was not convinced & especially got anxious when my cough worsened over the past month.
In desperation I sought a virtual consultation with a reputed Mumbai Pulmologist doctor who suggested I start treatment with Nintedanib . He sent me a prescription, but told me to use it only after he has seen my PFT and 6 min walk test reports and given me the go ahead.

It makes me angry that I lost 4 months waiting for my lungs to get the targeted treatment they needed to throttle the progress of the fibrosis. With so many people dying here with COVID I suppose my high profile Goa Pulmologist didn’t find my needs as critically in need of attention. I am 70 , there were younger patients to attend to needing urgent medical help.

The PFT and 6 min walk test reports were sent to the Mumbai Pulmologist doctor by email yesterday. I expect a reply will come by Monday whether I should start Nintedanib.

It’s v tough here in India. I had to also push my doctor to prescribe one of two injections for my osteoporosis which was expected to be negatively impacted by the heavy steroids I was prescribed by him.

It’s been a battle, but now that my lung fibrosis treatment is just around the corner finally I am now hopeful, and decided I am going to do all that needs to be done to fight this. Lung exercises, walking, yoga, - the works.

Yes, we need a good doctor and our own determination to fight this. .

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@spiritnsoul, and others
My goodness, you've had a tough time. I'm so sorry it's been such a struggle for you, You've been having your challenges during a most difficult time in your country. I'm impressed you've come as far as you have and accomplished so much re your health. Congratulations! You used your 'steel backbone' and determination to get care and to improve. Impressive!
Blessings as you continue your walk into better health. elizabeth

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Thank you Elizabeth! I do agree on assertive not necessarily aggressive 🙂. I will get through this and hopefully all will be good! It's just become tiring coughing so much and being short of breath. I am a massage therapist and it's terrible if I cough during someone's session. But I'm going to keep a positive attitude🤗

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I have been reading through all the responses here, and thought I would mention that having an autoimmune disease, with a high SED rate, can place you at risk for a lung condition called bronchiectasis, which may be missed in diagnosis, or may be what was called "small airways disease" in the report. Asthma also increases your risk. If so, the opacities may be a mark of a lung infection, further supported by your reports of coughing and tiredness. In the testing, has anyone asked for a sputum sample, or suggested a bronchoscopy to "harvest" some mucus from your lungs for testing?

My bronchiectasis went undiagnosed for years, and by then I had lung infections from 2 types of bacteria, was coughing constantly, and could barely walk a block.

Knowing what I do now, after finally getting my life back, I would suggest that you see a pulmonologist. If you can, find one who lists bronchiectasis among their areas of interest (or ask to talk to their nurse before scheduling.) If it is possible for you, you could also check into being seen at Mayo (Minnesota, Florida or Arizona), National Jewish Health (Denver) or Cleveland Clinic, all of them with a great deal of experience in this condition.

Sue

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Hi- our medical situation sounds similar. I had a lower left lobectomy in 2013- ground glass nodules (with no cough symptoms)- which were an incidental ct finding after a round of bronchitis. Followed them for almost two years before agreeing to min invasive surgical removal at Duke. Benign.
Also, followed by rheum for Raynauds for ~15 years and more recently for scleroderma.
Logistically, if you can connect w/ a major teaching medical center, you will have better options for locating md’s with a depth of exp treating scleroderma folks. I am sorry this is so difficult to navigate. Sending good health vibes your way.

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