Chronic eosinophilic pneumonia treatment options

[JodieRoscoe]

Seven years ago I was diagnosed with cryptogenic organising pneumonia and have been taking prednisone for the majority of that time. About a year ago there was some doubt about COP and I’ve now been diagnosed with chronic eosinophilic pneumonia (as well as asthma which I’ve had for about 20 years).

Has anybody else been diagnosed with this and are there any treatments available apart from prednisolone such as biologics that are licensed by the NHS?

Thanks

[Emerdale]

Hi Jodie 6 Months ago I was diagnosed with Eosophilia Fasciitis .

The rheumatologist also said my x Ray showed I had organising pneumonia in my lungs I was put on Prednisolone that was about 4 months ago since then nothing has been mentioned .

But for the past month I’ve suffered with shortness of breath and it’s been getting steadily worse now I’m breathless even when I’m sitting down . Have seen GP about it but he says it’s being caused by my weight 14 st which is not massive but we could all do with losing a bit of weight .Anyway reading your post it jogged my memory about being diagnosed in the early stages with Organising pneumonia 🤔Do you get shortness of breath ? And how did they diagnose it ? Also How did they diagnose chronic Eosinophilic pneumonia ?

[JodieRoscoe in reply to Emerdale]

Hi Emerdale - just spent 20 minutes replying to you and then cancelled the reply by mistake 😡. I had a CT scan 6 years ago and that apparently showed that I had COP and I also sent a copy of the scan to a consultant at the Royal Brompton who also confirmed COP.

I did have/still have breathlessness and went to my GP numerous times over a 12 month period but they just thought it was asthma, which I also have. I had several chest X-rays but they don’t always show problems because they don’t go into enough detail. Because COP is a rare lung disease many GP’s will only see it a couple of times in their career so if you get no joy with your GP you’ll have to push them for a referral but this can 6-12 weeks.

I’ve seen four NHS consultants and two private consultants but they all tell me I’m a complicated case.!! They don’t think there’s any sign of COP now so by a process of elimination they’ve decided it’s CEP but I feel that they’ve run out of ideas.

If you’ve been given a short course of prednisolone it covers up the symptoms for a while but then you have a gradual relapse which could be the cause of you feeling short of breath. The general rule is that you need to be on prednisolone for a few months and the you have a very slow taper to reduce the chances of a relapse.

My advice to you is not to be fobbed off by your GP and try to get a referral to a specialist because if you do have COP it needs to be dealt with by an expert and even then it’s not straightforward. Let me know if you’ve got any questions because I’ve had to learn a lot about this condition over the last few years - unfortunately!