Welcome back, friends! This week’s topic comes from the beautiful mind of a friend on the Instagram poll I ran recently. She asked about what my diagnosis is and how that lead to finding a treatment that works for me. That got me thinking, I never actually got into detail about what Hypersensitivity Pneumonitis is. Or what I had to do to get diagnosed and find a treatment.
What is Hypersensitivity Pneumonitis?
Putting it simply, Hypersensitivity Pneumonitis (HP) is a rare immune system disorder where it over reacts to something in your environment. This allergic reaction leads to inflammation (and sometimes scarring) in the lung tissue. While there are common allergen that cause HP (mold, birds, humidifiers, and hot tubs), there are 300 known antigens and if you’re like me you won’t know your cause. I’m hoping to do more allergen testing in the near future now that I’m off the steroids, but I’m not getting too excited. It’s just one of those things, right now.
According to the American Lung Association (2024), people who work or live in areas where they come in contact with the above mentioned allergens are at a higher risk of developing Hypersensitivity pneumonitis, but 85-95% won’t. It’s more common in people over the age of 50, however, it can affect people of all ages. The reasoning for this is currently unknown, but there is a suspected genetic factor. It doesn’t run in my family personally, but if someone in my family is going to get a mystery illness, it’s me…
Symptoms
There are two types of HP, acute and chronic. Acute is just what it sounds like, an attack that lasts 12 hours to a few days after an intense exposure of what you’re allergic to. It feels a bit like the flu with fever, chills, muscle aches, headaches, and cough.
Chronic develops after continued exposure to small amounts of the allergen. This will look like shortness of breath, fatigue, coughing that lasts weeks or months, and weight loss. All of which will get progressively worse. Now I have chronic and had all the symptoms (minus the weight loss, unfortunately). This one can lead to pulmonary fibrosis, which I also have very mildly.
Personally, I also have some COPD/Emphysema type stuff going on, so that makes it a bit weird too. I don’t do or expose myself to anything that causes COPD/Emphysema and I don’t have the deficiency that would constitute genetics. Like I said, mystery…
How did you get diagnosed?
Getting a diagnosis took me a while, but ending up in the emergency room for low oxygen stats and wonky sounding got me one pretty quick. I had been feeling sick since March/April of 2020, but attributed to allergies and working with children at an after school program. I had gone into urgent care three times and kept getting told it was viral pneumonia and sent home with meds. Prednisone, an inhaler, and Tussin beads. I did not for a minute believe I had pneumonia of any sort, but the Prednisone worked.
In May, I went to see my mom for Mothers Day and almost died walking up the hill from the lake. This was not normal for me as I was very active. She had a pulse oximeter at home, so we check my stats and it was 85. If you know anything about oxygen levels, anything below 90 is bad. We both knew I needed to be seen, but after three times I was over it. I wonder if I went to my GP, if things would have been different though…
A couple of weeks later, I woke up to very concerning colored gums and oxygen levels of 75. Super not good and scared me. Thankfully, I was able to get them back up to 85 with some deep breaths, so I continued on with my day of driving. I had to go to an appointment for something different and I wasn’t going to miss it. However, I did promise myself, my mom, and my chiropractor that I would be seen when I got back into town. I may be stubborn, but I’m not stupid.
Cool, so then what happened?
When I got to urgent care, I saw a different practitioner than I had previously. She took a look and listened. Hearing some concerning stuff, she told me that I needed to get myself over to the hospital. I complied and after a long day of tests, meds, and talking to people I was admitted. I’m not going to get into that experience here, but it left something to be desired overall. Wouldn’t recommend. During this time though, they contacted one of the larger hospitals in the larger city nearby and the pulmonologist on call suspected it was an environmental thing and got me an appointment set up for the next week.
At that appointment we went through all the timelines and questions, as well as did all the blood work. From there I did more blood work, x-ray, and CT scans. The doctor’s original thought was HP, however, since my symptoms fit a few different things (and none of them exactly) I eventually ended up going in for a VATS lung biopsy. They took a pinky sized section of my right lung and examined it. Hypersensitivity pneumonitis was still on the table and it fit the best, so we went with it.
So, how did you find a treatment that worked for you?
It took a hot minute. Honestly, it all kinds of blends together at this point. That being said, I was on a high dose of prednisone for years to get things under control. I was also given two long acting inhalers and a nebulizer to use as needed.
We wanted to get me off the steroids, as long term use is good for no one and it was wreaking havoc on my body. My pulmonologist decided to try the nicest of the immuno-suppressants and see how I tolerated it. I am the queen of side effects, so I did have some, but overall I tolerated it well. My prednisone tapers weren’t effective, but eventually I did get down to 10/15 mg alternating doses. I stayed there a while until I was able to move. If you were here in 2023, that was a huge deal for me.
Your Hypersensitivity Pneumonitis has stopped progressing? How’d you manage that?
Since my move, my Hypersensitivity Pneumonitis has stopped progressing. Until somewhere between the end of 2022-2023 I got 3% worse every three months and was headed for a double lung transplant. BUT, since getting into my new apartment, I’ve able to taper off the steroids and have been off for about two months. I’m hoping it stays this way. I don’t want to push it, but maybe I could get off the immuno-suppressants too…my hopes are not high, but it’s a thought.
Now that I am in a better place, I need to undo the damage the steroids has done. I’m doing this by *hopefully* going to Pulmonary Rehab, and doing my routine from this post. That way I can increase my abilities and functioning for my upcoming adventures!
Just so you don’t feel alone…
I call this gallery…F*** you Prednisone.
Remember to take care of yourselves and be safe out there! Seeyalaterbye <3
Also, if you feel called to help a sista out with her travels, check this out!
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