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A MyLupusTeam Member asked a question 💭
West Branch, MI

Hi. I found out last month I have SLE Lupus and I just started on meds. I am worried that it is attacking my lungs since they have always been a weakness for me with asthma attacks and allergy attacks. My lung has been hurting off and on for months. Finally seen an asthma specialist who said I only have 70% useage of lungs and its not from asthma so he can’t help me. I have an appointment with a pulmonologist but its 2 months away. I am getting winded very easy and it scares me. Just wondering… read more

April 6
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A MyLupusTeam Member

I’m so sorry. Hugs to you!

April 9
A MyLupusTeam Member

I was diagnosed with a lung fistula but that could also be a result of the radiation I had 13 years ago to my lung. I also have limited use of one lung. Causes shortness of breath and I cannot fly. This really put the breaks on our after retirement travel. I have had not one Dr say it was the Lupus.

April 8
MyLupusTeam

Are lung pain and breathing issues common with lupus?

Yes, lung problems affect about half of all people living with lupus, so you're definitely not alone in experiencing these symptoms. Many MyLupusTeam members share similar concerns about lung pain and shortness of breath.

The lung pain and reduced lung capacity you're Show Full Answer

Are lung pain and breathing issues common with lupus?

Yes, lung problems affect about half of all people living with lupus, so you're definitely not alone in experiencing these symptoms. Many MyLupusTeam members share similar concerns about lung pain and shortness of breath.

The lung pain and reduced lung capacity you're experiencing could be related to several lupus-related lung conditions:

* Pleuritis (pleurisy) - The most common lung problem in lupus, affecting 40-60% of people. It causes sharp, stabbing chest pain that worsens with deep breaths
* Pneumonitis - Inflammation inside the lungs themselves
* Shrinking lung syndrome - A rare condition where the diaphragm sits higher than normal, making deep breaths difficult
* Pulmonary hypertension - High blood pressure in the lungs affecting about 10% of people with lupus

One MyLupusTeam member described their experience: "On a good day, I can take a deep breath and feel my lungs fill, but I still feel a tightness. On a bad day, it almost feels like I have a belt around my chest keeping me from breathing deeply." What should you do while waiting for your pulmonologist appointment?

It's understandable to feel scared and depressed, but you're taking the right steps by seeking specialized care. While waiting for your appointment:

* Don't hesitate to contact your rheumatologist or primary care doctor about your symptoms - they may be able to see you sooner or adjust your current medications
* If you experience sudden or severe shortness of breath, chest pain, fainting, blue nails or lips, or poor alertness, seek emergency care immediately
* Keep track of when your symptoms worsen and what triggers them

One member shared: "I had been sharing the shortness of breath with several of the rheumatologists, but they didn't say much since shortness of breath is common with lupus. I got referred to a pulmonologist and cardiologist by my primary care doctor. I think sometimes you need to insist if you feel something is amiss."

Early treatment can help prevent complications like lung scarring, so advocating for yourself is important. Your concerns are valid and deserve attention.

April 6

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