bronchiolitis obliterans

[Wheezy19543]

I have a condition called bronchiolitis Obliterans also called Obliterive bronchiolitis I have had this condition since birth so for 29 years I also suffer from brittle asthma! I reaching out to anyone who has the same condition as me! just to get to know how you guys cope with this!

[Wheezy19543]

Sorry obliterative bronchiolitis

[Caspiana]

Hello Wheezy. I was diagnosed with BO just over a year ago. So pleased you are here and so nice to meet you!

Cas xx 🌸

[Laurenmerrin_xo]

I have recently been diagnosed with obliterative bronchiolitis

[Wheezy19543]

Hey guys! How are you guys Cooing feel free to message me any questions you may have

[Wheezy19543]

What treatments are you guys currently undergoing! amazing to have people who have the same condition!

[Katinka46]

Moring Wheezy, welcome to this site. There are a few of us here with OB. They will introduce themselves soon. I know you have already looked at my tangled and frustrating history. At the moment I am on Azithromycin. This can help both asthma and OB, but I think it only helps the kind of OB that is mainly caused by inflammation. For those with fibrotic obstruction then, sadly, there seems to be little to help. I am fairly sure that is my phenotype and I shall ask my consultant if i can come off it. It is doing no good. Pulmonary Rehabilitation is recommended. Do not be put off what happened to me because my reaction was — I am sure — caused by the other stuff going in my lungs, i.e. the chronic thromboembolic disease, (unresolved blood clots in the blood vessels in my lungs) which may have developed into pulmonary hypertension. If you do PR then you will be the youngest there by far, and they will love you and give you shedloads of sympathy. They will all be lining up to mother you, including the men.

Are you on any medication at the moment?

K xxx

[Katinka46]

Wow! A lot of those meds are obviously for inflammation and the asthma component of your condition, I have been tried with some of them. The steroids do nothing at all. I did have asthma from the age of seven until I got the PEs six years ago. Then, bizarrely, the asthma took a back seat. Now there is no wheezing, coughing, congestion or infections. And none of the steroids or bronchodilators relieve the breathlessness at all.

Where abouts are you?

K xx

[Damocles]

I’ve just been diagnosed and am finding it difficult I am also looking for people with the same condition

[Artist1956]

I am new to this group today. I have BO. Just diagnosed 1 year ago. Secondary to Psoriatic Arthritis. Just saying Hi.