Mild ground glass opacities and blood markers for autoimmune disease

Posted by jeng1176 @jeng1176, Aug 27, 2021

Hello, I am wondering if I am over reacting to some tests results I have just seen. I have been having an ongoing extremely loud dry cough and shortness of breath. I do have asthma and in the past I have always had it very well controlled with Advair once a day and Albuterol as needed. But something has changed and my inhalers are not getting rid of the cough or getting rid of this tight feeling I have. I feel like I can not breath in deeply and take a full breath. I also have lots of achiness and joint pain. So my PCP ran a bunch of blood work. I have positive ANA titer 1:640. Speckled. High ESR. High inflammation markers, and a low positive scl-70. Everything else seems to be in normal range. I did a pulmonary function test which was normal. I had a cat scan that shows a linear scar in medial r lobe that has not changed since 2017 and mild ground -glass opacities in lower lobes. It also said probable small airway disease. My rheumatologist has not called me back about my cat scan results. I saw him at an appointment a couple weeks ago before the cat scan and all he said was he thinks I probably have a connected tissue disease and he wants to monitor me and see me again in December. So is this a good plan? I'm just supposed to go around not feeling good and see if I get better or worse? I feel like I am lost in the shuffle. I called to ask about my test results but the nurse said my doctor is out of town and that he would have to be the one to talk to me. I am wondering if someone can give me a professional opinion of what should happen next.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

I am in the same situation. My dry cough over the past 2 years is getting worse & more frequent, my ct scan detected ground glass and fibrosis and a nodule. I did my pulmonary function test and the 6 minute walk test – Pft not great, but not v bad either . Im awaiting treatment for the lungs. Waiting is stressful .

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@jeng1176 – Welcome to Mayo Connect!
We are not physicians, but ordinary people who have specific conditions and experience that we share with other members.
I can see why you don’t want to wait until December to be re-evaluated.
It seems very possible that you do have an autoimmune disease.
However, your acute problem is respiratory – it may be part of the autoimmune picture, but it could also be an exacerbation of your asthma. It seems as if your immune defense is on high.
Something similar happened to me a couple of months ago. I have had some autoimmune problems over the years plus manageable asthma. I had gotten a typical summer cold with cough when I suddenly developed severe asthma and had to go to ER. I had never had anything like that either where I could hardly breathe. After 4 days in the hospital I was fine.
Maybe you can get to see a pulmonologist or allergist in the meantime? They specialize in asthma and pulmonary illnesses.
Bring your test results!

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Good morning @jeng1176 and @spiritnsoul and welcome to MayoClinic Connect. We’re a community of patients, family members and caretakers of patients. But were not doctors. The waiting you’re experiencing must be awful especially if it’s hard to breathe. I found this article that talks about ground glass opacities and it mentions that GGO are very common now because of COVID-19 and the bad air quality we have now.
https://www.medicalnewstoday.com/articles/ground-glass-opacity
I believe that if your situation were serious, you would have heard from the doctor right away. Not that that helps any. If i were you i would want to know, good or bad, immediately. I’m going to ask @merpreb if she can help out.
@jeng1176 you mentioned that your inhalers are doing the job very well. You might call and say that you need a stronger prescription. Do you think that will help for awhile?
@spiritnsoul you say that you’re awaiting treatment. What treatment has been suggested?

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@spiritnsoul

I am in the same situation. My dry cough over the past 2 years is getting worse & more frequent, my ct scan detected ground glass and fibrosis and a nodule. I did my pulmonary function test and the 6 minute walk test – Pft not great, but not v bad either . Im awaiting treatment for the lungs. Waiting is stressful .

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@spiritnsoul and all
May I ask if you have a diagnosis yet? Seeing a pulmonary specialist? Rheumatologist? I have had Sarcoid since I was 40 years old…74 now. Hit lungs then, remission after 8 months of very heavy prednisone then off and on prednisone as it keeps hitting and my lungs are hit hard several times a year with bronchitis and/or pneumonia, asthma. Dry cough.

I found with this kind of disease, I had to take a proactive approach. I got very involved with my diagnoses and care.

Suggestion: you do the same . Become a 'difficult' patient, as a cancer doctor wrote in his book for patients with advice to ask questions, get answers, ask again and more until you get heard and are involved in your treatment. Ask, listen, understand, research using ONLY legitimate sources….i.e. Mayo Clinic, Cleveland Clinic, major university hospitals, etc…I go online to these sites and others as these, find info so I can understand what's truly happening in my body.

If your doc is out of town, speak with his partner or another person who can give you results. You can not sit and wait. Be proactive. Now. Be strong and learn and do well…blessings, Elizabeth

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@ess77

@spiritnsoul and all
May I ask if you have a diagnosis yet? Seeing a pulmonary specialist? Rheumatologist? I have had Sarcoid since I was 40 years old…74 now. Hit lungs then, remission after 8 months of very heavy prednisone then off and on prednisone as it keeps hitting and my lungs are hit hard several times a year with bronchitis and/or pneumonia, asthma. Dry cough.

I found with this kind of disease, I had to take a proactive approach. I got very involved with my diagnoses and care.

Suggestion: you do the same . Become a 'difficult' patient, as a cancer doctor wrote in his book for patients with advice to ask questions, get answers, ask again and more until you get heard and are involved in your treatment. Ask, listen, understand, research using ONLY legitimate sources….i.e. Mayo Clinic, Cleveland Clinic, major university hospitals, etc…I go online to these sites and others as these, find info so I can understand what's truly happening in my body.

If your doc is out of town, speak with his partner or another person who can give you results. You can not sit and wait. Be proactive. Now. Be strong and learn and do well…blessings, Elizabeth

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Thank you so much! I called and asked the nurse to refer me to a pulmonologist. It is a rheumatologist I have been working with. My blood tests came back showing a low positive for scleroderma. I am not okay with waiting until December. I have read what this disease can do to your lungs heart kidney and digestive system. I have absolutely no skin symptoms. If nobody calls me back by Tuesday I will have to be more aggressive. The nurse acted like I was being over concerned and a nuisance. What I have found is that this is not a common disease and many doctors do not have a lot of knowledge on it. I just needed someone to tell me it's okay to be more aggressive and my own advocate I guess! Thank you!

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@jeng1176

Thank you so much! I called and asked the nurse to refer me to a pulmonologist. It is a rheumatologist I have been working with. My blood tests came back showing a low positive for scleroderma. I am not okay with waiting until December. I have read what this disease can do to your lungs heart kidney and digestive system. I have absolutely no skin symptoms. If nobody calls me back by Tuesday I will have to be more aggressive. The nurse acted like I was being over concerned and a nuisance. What I have found is that this is not a common disease and many doctors do not have a lot of knowledge on it. I just needed someone to tell me it's okay to be more aggressive and my own advocate I guess! Thank you!

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@jeng1176 Hello, I'm so glad my words spoke to you. You MUST be very assertive, not aggressive. I believe we can and must require our medical professionals to be open, honest, up-front, and available with answers and knowledge. My body. My tests. My information. Your responsibility, mr. doctor, to share all you know so I can, with your advice and guidance to take whatever steps are next for the best outcome.

When I learned I had that responsibility to myself and my family, I grew…I felt myself become an adult, no matter my numeric age. I grew up and began taking responsibility and not let the medical folks take away my determination. You be strong, develop a steel backbone, Hold yourself straight as possible, breath from the diaphram before walking into a doc office or test or hospital. You own your body. You are in control . Remember that. Always. I have found that to be a struggle well worth fighting and winning. I am in control. This one thought gives me the strength to stand a bit straighter, fight again or harder or still, deal with whatever rolls my way. Important to have that inner strength available so whatever happens, we can handle it with calm and grace and do well.
Blessings again, as you take these steps. Use these groups and these wonderful Connect folks to share and learn and to help you through this journey.
Eliazabeth

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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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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. .

REPLY
@spiritnsoul

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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@ess77 I, too, so admire the strength and determination of @spiritnsoul and @jeng1176 . All of you are an inspiration to others as they start their journey. Thank you for participating on Connect.

REPLY
@spiritnsoul

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. .

Jump to this post

Good luck to you!! I hope you get the help you need! You are in my thoughts!

REPLY
@ess77

@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

Jump to this post

Thank you all for your encouragement. It’s comforting to know that we can all be there for each other even though we are oceans away.
I know it’s tough for all of us, but we can’t give up . The fight must go on and we need to avoid sinking into depression from the overwhelming feeling of helplessness (which poses a real risk in situations like ours).
Nobody is going to care about our health the way we do. After all, it’s our bodies and our life.
Always, always, hold tight to the reins.
When things get tough, and communicating with doctors become impossible we need to remember that – the fight is ours, not theirs.
My thoughts and prayers are sent your way.

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