Hypersensitivity Pneumonitis-I thought I had Asthma !

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Bella949
New Member


Date Joined May 2012
Total Posts : 3
   Posted 5/22/2012 4:58 PM (GMT -6)   
In March 2008, I was diagnosed with adult onset asthma. I struggled like crazy but took the usual meds (Advair, Albuterol Inhaler & Prednisone intermittently) for the next two years. Thirteen months in, I found myself in the hospital for 5 days with Pneumonia. Throughout those 5 days, they took xrays and a couple Cat Scans of my chest and even of my sinuses. They also kept me on telemetry in case my heart decided to join in. By then I was mostly seeing a Pulmonary specialist and apparently it still seemed as though I had asthma. July 2010, I had a Pulmonary Function test and a Cat Scan of my chest. We learned that my lung function was well below normal and the Cat Scan showed there was scarring in my lungs. There was also "a fog" over the lung in the Cat Scan leading my doc to surmise that I may have IPF (Idiopathic Pulmonary Fibrosis). Not knowing for sure, I began taking a low dose (10 mg) of Prednisone and 50 mg of Imuran. At some point, I discontinued the Imuran but stayed on the Prednisone for the next 15 months. In June of 2011, my next Pulmonary Function test showed improvement so I was taken off Prednisone and put on 150 mg of Imuran per day.

At this point, I should tell you that I am a very optimistic person so I never agreed that I had IPF. After all, that would mean my life was going to end within the next 7 years. I was 58 and just about to marry the love of my life, so my only thought was "we need to figure this thing out!"

In January 2012, my next Pulmonary Function test revealed that my lung function was worse and it didn't appear the Imuran was helping. At last it was time for a lung biopsy. That happened in March 2012. My pathology was read by two separate labs but their diagnosis was identical. I had HYPERSENSITIVITY PNEUMONITIS. The same day we got this news, I took a blood test to find out what I was causing this. They tested for the usual culprits...mold, bird poop, dust, composting food and they all came up negative. Yikes, what next? On to see an allergist who did 78 scratch tests on my back. It was a little annoying, but I was so excited to learn what was causing all this trouble. The doctor came in and said I was not allergic to ANYTHING! Well, that truly sucked because at the very least I thought I had a milk allergy.....lol

This allergy doc could see how drained I was from all this, so he took me to sit next to him at his computer so I could watch as he Googled my diagnosis with each one of my medications. I couldn't believe it, but we got a hit on my blood pressure medication, Hydrochlorothiazide (HCTZ). We also looked at Lovastatin, but it seems only 19 people in the whole world have ever reported hypersensitivity to it. In any case, I stopped taking the HCTZ the next day and within hours I felt better. The next week, I stopped taking the Lovastatin because now I'm scared of all medications. I've been tracking my blood pressure every day and I don't even have high blood pressure.

The curve in this story is that within about 7 days, I began coughing, blowing my nose and sneezing all day every day. My doctor explained that these symptoms reflect my lung trying to heal themselves. I would love to let them heal naturally but it seems they are inflamed and if I allow my own immune system to try and heal my lungs, it will cause more scarring. The scarring I already have can never be reversed, so the objective now it to stop the scarring and preserve the lung function I still have. Once again I'm on Prednisone, 10 mg per day for the next six months. Around the end of July 2012, we will do another Pulmonary Function test to see how much I have improved.

The changes to my diet while on Prednisone include no processed foods (nothing in cans, boxes or bottles), rice, potatoes, grain, dairy, anything with flour. Some additions are Calcium, Vitamin D and Potassium pills. Prednisone increases glucose, so all sugar is out. It also can raise blood pressure, so lots of walking is in. The most deadly side effect is an increased appetite, so keeping busy is very important ! Lastly, it can keep you awake, so it's important to take it in the early AM. For me that is about 6 am when I wake up.

I'm posting this because it took us over 4 years to figure out what was wrong with me. Maybe something here can help someone else...who knows! Please write me if you have questions. I sure couldn't put every detail or every test in this narrative. Be well !

It's Genetic
Veteran Member


Date Joined Mar 2010
Total Posts : 1540
   Posted 5/22/2012 6:50 PM (GMT -6)   
I can't take hydrochlorothiazide either. My internist says it's the sulfa thing.  I am extremely allergic to anything with sulfa in it.

Have you ever been checked for that?

I'm so glad you posted this.

Thanks very much.

It's Genetic

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/22/2012 7:00 PM (GMT -6)   
My aunt has IPF. She's down to 1/4 of a lung now. She literally coughs up parts of her lungs.
Do you still have IPF or did they change it on you. If you still have it, bless your heart.
Joy

Bella949
New Member


Date Joined May 2012
Total Posts : 3
   Posted 5/22/2012 8:17 PM (GMT -6)   
It's Genetic - Wow, interesting about the sulfa thing. I'll ask my doc next visit :) Thanks for the info!

couchtater - Apparently I never had IPF. That said, I do have scarring in my lungs and that is the definition of fibrosis. Officially, my diagnosis is hypersensitivity pneumonitis and from what I understand, the scarring stopped as soon as I discontinued taking HCTZ. I'll never be an olympian, but I will be able to exercise and live a normal life. I'm so sorry about your aunt. Having been thru the last 4 years, I wouldn't wish lung issues on anyone. Thanks for your message.

Bella949

EllenA
New Member


Date Joined Aug 2013
Total Posts : 1
   Posted 8/31/2013 7:13 PM (GMT -6)   
Bella949,

I would love to talk with you about your discovery of being allergic to the medication that you were taking. My aunt has been diagnosed with hypersensitivity pneumonitis and she actually takes the same meds that you were taking. She has been unable to find the cause but after reading your thread, she is going off of her meds to do a test. Are you available to discuss this further? We have so many questions!

Thanks!

Ellen

Bella949
New Member


Date Joined May 2012
Total Posts : 3
   Posted 8/18/2014 3:58 PM (GMT -6)   
Ellen, I just saw your post. If you still want to talk, I'd be glad to....just not sure how to do that privately. I've added my email address so please write me there.

Post Edited (Bella949) : 8/18/2014 3:01:51 PM (GMT-6)

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