Father has BOOP and Pulmonary Hypertension

Posted by isorin @isorin, Apr 11, 2023

Hi,

First of all, thank you all in advance for any insight.

I'm writing this on behalf of my father due to his limited English, and the goal is to see if there is anything that can be done to improve his condition and if going to Mayo Clinic to see a pulmonary specialist is worth a shot for him.

Some background:
My father had a bone marrow transplant in 2013 for leukemia. He has since then been cancer free, however the chemo and recovery process took quite a toll on him physically. Over time he developed BOOP, and it seems like his pulmonary condition has been deteriorating slowly over time. He now has to always have a oxygen concentrator with him with a nasal canula, and has to walk with a walker, otherwise he gets too tired and out of breath.

He can't be on a long prescription or heavy dose of prednisone, which seems to be the main treatment, because of his other conditions and his pulmonologist did not recommend it.

So this brings me to my main question: are there any other recommended treatments for this condition, are there any doctors at Mayo Clinic (Rochester) that specialize in treating BOOP, and what kind of treatments have actually worked for people other than prednisone?

Thank you all in advance!

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miloandlisa | @miloandlisa | Apr 11, 2023

I was treated for boop at mayo.

isorin | @isorin | Apr 12, 2023

In reply to @miloandlisa "I was treated for boop at mayo." + (show)

Thanks for the reply! What kind of treatment did you receive?

Colleen Young, Connect Director | @colleenyoung | Apr 12, 2023

Hi @isorin, in addition to connect with @miloandlisa, I'm also tagging @spudmato @kp5450121 @oakbourne @albuqneece @bridgetamaro @lisapullen who have experience with BOOP, also called Cryptogenic Organizing Pneumonia (COP).

You might also be interested in these related discussions:
– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
– Cryptogenic Organized Pneumonia (COP) https://connect.mayoclinic.org/discussion/cop-1/
– Obliterative Bronchiolitis (OB) v. ILD or CLD??? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

Pulmonary Medicine is the department at Mayo Clinic that treats COP. https://www.mayoclinic.org/departments-centers/pulmonary-medicine/home/orc-20397844

Corticosteroids, such as prednisone, are usually the first-line treatment for COP. Has your father been on prednisone? How is he doing?

spudmato | @spudmato | Apr 12, 2023

In reply to @colleenyoung "Hi @isorin, in addition to connect with @miloandlisa, I'm also tagging @spudmato @kp5450121 @oakbourne @albuqneece @bridgetamaro..." + (show)

While my treatment for BOOP was and remains prednisone, I also take Bactrin as a infection protection. I was told by my pulmanoligist(?) that there is an alternative if no one with more difficult side effects. It is not cure able. I have it for over 5 years. You pick the best worst choice.
Good luck.

miloandlisa | @miloandlisa | Apr 12, 2023

Boop is curable.

Colleen Young, Connect Director | @colleenyoung | Apr 12, 2023

In reply to @spudmato "While my treatment for BOOP was and remains prednisone, I also take Bactrin as a infection..." + (show)

@spudmato, sorry to hear that you have continuing and lingering symptoms with BOOP. For most people, BOOP is curable.

Cryptogenic organizing pneumonia (COP) was previously called bronchiolitis obliterans with organizing pneumonia (BOOP). About 50% of people with mild cases of COP recover without treatment. Up to 80% of people treated with corticosteroids completely recover from COP.

But COP symptoms may return. Treatment with corticosteroids usually helps to improve symptoms if they happen again. People who have recovered from COP usually live long, full lives. Read more here:
- Cryptogenic Organizing Pneumonia https://my.clevelandclinic.org/health/diseases/24119-cryptogenic-organizing-pneumonia#management-and-treatment

isorin | @isorin | Apr 13, 2023

In reply to @colleenyoung "Hi @isorin, in addition to connect with @miloandlisa, I'm also tagging @spudmato @kp5450121 @oakbourne @albuqneece @bridgetamaro..." + (show)

Due to various other ailments and risks it is not recommended for him to go on heavy doses of corticosteroids. He has bone issues already and he was told prednisone would potentially make it worse.

spudmato | @spudmato | Apr 13, 2023

Colleen,
Thanks for the comment.
My information is a bit different.
I have been diagnosed both with COP & Eosinophilic Pneumonias.
They appear to have some similarities, but are or apparent on different lobes of he lungs.
I'm told that my COP is not curable, and that try as we might my dosage of prednisone remains at a minimum of 10MG (currently 12.3MG since I am recovering from viral pneumonia at this time). Below 10MG the COP "flairs up."
I guess different results for different people.

isorin | @isorin | Apr 24, 2023

In reply to @miloandlisa "I was treated for boop at mayo." + (show)

Hi,

Can you elaborate as to what the process was to get treated at Mayo? How many visits approximately? What medication did they put you on?

oakbourne | @oakbourne | Apr 25, 2023

You don't need steroids to cure Boop Pneumonia. You can take an antibiotic. Doctors give out steroids like candy, but wouldn't dare give it to their children. My treatment was at Candler' St Joseph's and it was awful. The doctor left me in the lurch. I ended up cussing him out. Hospitals in Savannah, GA, are CRAP!