Anyone else have problems with COPD inhalers?

[Poeme]

Incruse has been by far the best inhaler I’ve used. It’s made breathing so much easier for me. But since I’ve been on it I’ve had some weird and scary health concerns that I can’t help attributing to the inhaler. In the approximate nine months I’ve used it, I’ve had about seven incidences of gagging up blood. Truly terrifying experience. I’ve also experienced instant massive blood blisters which turn into painful ulcers throughout my throat and mouth. I’ve been to a gastroenterologist, pulmonologist, oral surgeon, GP and physician for tests but have drawn a blank - all have told me it can’t be my inhaler and not to go off of it. Last Friday I had another painful and embarrassing episode in a cafe. That night I told my husband I wasn’t going to bed until I found an answer to all my painful throat issues. My research eventually revealed a condition called ABH -instantaneous blood filled blood blisters (usually brought on by eating) that transform to white ulcers. They can give a gagging, choking sensation in the throat. When I had a name I googled it with inhaler medications - not expecting any correlation at all - because all my specialists have insisted that it can’t be. To my surprise- there was a lot of information. ABH is a rare, painful (but benign) disorder that definitely can be brought on by inhalers. Apparently it has something to do with less collagen in the mouth and can cause atrophy. Obviously, I need to bring this info to my physician to confirm my findings. The last several months have been an absolute nightmare where I didn’t feel supported by doctors. I have had to leave meals to cough up blood painfully. I love breathing much easier- but it could very well be at a high price to my health and dignity.

[Tia4209]

I have had ABH and EB my whole life. I have a very limited diet which helps me avoid getting blisters in my throat. Anything acidic, rough or spicy will cause them. I can only drink weak tea, coffee and water no juices etc A bland and soft diet is my only way to avoid getting them.

[Poeme in reply to Tia4209]

Thanks so much for Tia for your reply. It’s a nasty condition. I really appreciate your diet tips too . I have eliminated crispy food and ‘splintery’ food like crusty bread rolls. Do you mind me asking if it makes you cough up blood when the blood blisters are further in your throat ? I wonder if changing my inhaler would improve things? Thanks again xx

[Tia4209 in reply to Poeme]

Hi again. Yes I cough up blood, if you get a large blister in your mouth under your tongue try to get a photo. Dr’s took more notice of me when they saw the size of the blisters. I have read steriod inhalers can cause ABH but not EB. If it has only started since your new inhaler came along I personally would talk to my Dr about a change. AbH is scary and miserable. xx

[Poeme in reply to Tia4209]

Many thanks Tia. I don’t feel so alone now - but I’m sorry you have it too. For some reason I felt ashamed having this weird condition. At my staff show something I ate felt like it pierced my esophagus and I just made it to the toilets in time. I looked in the mirror at my face with blood smeared at the side of my mouth and the blood in the toilet - and felt like Carrie in that Stephen Kimg movie! Hid in the loos in tears for the rest of the Christmas show. I didn’t know what was happening to me.as - as if emphysema and Alpha 1? isn’t enough! I don’t know why none of my doctors/ specialists didn’t diagnose it. My pulmonologist wanted to perform a bronchoscopy - but I knew it wasn’t coming from my lungs ( and a scan confirmed it) Thanks again xx

[Fennella02]

I don’t have this but I do get lots of sensitivities to meds’ and lots of eye rolling from doctors if I mention any of it. It sounds very much as though your body is protesting and should be listened to. I’m sure there are other inhalers. I had a reaction to Spiolto whereas most people don’t. It’s probably time to demand a medication review. X

[Poeme in reply to Fennella02]

I know! I don’t think pulmonologists realize that our meds don’t always agree with us. My pulmonologist said that there’s no side affect at all with any inhalers except possibly Candida if we don’t rinse thoroughly enough afterwards. Then he put me on Spiriva - and my vision was so blurry I couldn’t drive. Then Breo - and it took away my voice. Now I can’t eat without being in pain or bleeding. ! Many thanks for your reply and all the very best xx