Obliterans Bronchiolitis/obliterative Bronchiolitis

[SusannaU]

Hi,

New here.😀 I have been diagnosed with BO after a biopsy. I had problems with my lungs for approx two years before the diagnose. The cause is not known, no transplantation or any other known diseases (yet).

I have read quite a bit about the disease, although its not much out there. Now to my question, it seems like a lot with BO takes Montelukast. I have asked my doctor about that and she said its for allergy. Is there anyone here with BO who takes Montelukast?

Im also happy to try other things so im grateful for any other ideas.

Thank you for reading and happy easter.

[wheezyof]

There's a few of us on here with Bronchiolitis Obliterans, though we usually turn the name round to it's alternative Obliterative Bronchiolitis then we can say OB and not sound like we have Body Odour.

OB is difficult to find out about because it's still considered rare. However as more people are diagnosed hopefully more will get known about it.

I also have bronchiectasis.

I have 3 inhalers : Fostair, ventolin and spiriva respimat.

I take azithromycin 3 days a week (antibiotic)

I use a flutter to help loosen mucus so I can cough it out.

(As a result of side effects of oral steroids that I was prescribed(I no longer take them) I also have osteoporosis so take adcal and risondrinate for my bones. My stomach got wrecked by all the drugs so I take omeprozole. My skin thinned and became dry and sensitive so I use aqueous cream to wash and use betnovate when my skin flares.)

OB is activity limiting because you get breathless so easily. It's not the end of the world though. You just need to pace yourself, maybe concentrate on less physical hobbies.

You will find some very helpful OB people on here.

Keep as well as you can xxx

[SusannaU in reply to wheezyof]

Thank you! You are right. OB sounds better.😀

There is a OB forum on Facebook where Montelukast is mentioned a lot.

I was initially told that they would put me on a transplantation list if it showed OB in the biopsy. That was a shock! It wasnt until recent that my new doctor told me that I seem to be stable and that i might not need a transplantation at all. Loved to hear that.

Would love to find more information about OB but its hard to find something that is comparable.

[Katinka46 in reply to SusannaU]

I am another with BO/OB. Like Wheezyof I prefer OB. Mine very unusually was caused by pulmonary emboli that didn’t resolve, developed into chronic thromboembolic disease, largely in the small blood vessels, and somehow damaged the small airways. I am on no medication apart from Warfarin for the CTED. I was on Azithromycin but stopped it in the autumn as I thought it was affecting my hearing. I am deaf already and couldn’t bear the thought of losing any more, and the Azithromycin was doing nothing for the condition.

Because it is a fibrotic disease I think there are trials to test medication for pulmonary fibrosis on OBers. I applied to join a Facebook group for OB but there was no response.

I will pm you for more details.

All the best

Kate x

[Carnival567]

I too have OB as well as bronchiectasis. It was caused by amiodarone/dronedarone which I was given for atrial fibrillation. I have not taken either drug for 18 months now and I am on digoxin for af now. The OB has progressed very little but the bronchiectasis keeps going so I am on ambulatory oxygen now, borderline long term oxygen therapy. I take QVAR and Anoro Ellipta inhalers, and antibiotics when necessary. Most of the other drugs I take are for heart problems! All the best xx

[Caspiana]

Hi Susanna.

I have OB and am on Montelukast once a day. Welcome to the forum. xx 🌞🍀

[M67W77]

Have been taking montelukast for a long time. I have allergies and it helps. Not out much. I have bronchial asthma and bronchiectasis. Now 81 years old so consider myself fortunate.

[Artist1956]

I am new to this site today. I have BO also. Diagnosed 1 year ago. Montelukast is an old allergy med. Pulmonologists are using it as part of a study protocol for BO or OB. It is called the FAM Protocol. Fluticasone Inhaler, Azithromycin and Montelukast. You can find the study on the NIH website. Go to the clinical studies link. It's pretty easy to maneuver. I have been placed on each component. I did not do well with the steroid inhaler. I did not do well with the Montelukast. However, the azithromycin, macrolide antibiotic, has really helped stabilize me. I take Clarithromycin because of a liver problem. I follow with Temple Lung Center in Philadelphia, PA USA. Nice to meet you.