Cops

[Hezy-86]

Hello I'm new does anyone on here have cops ?

[Swerv]

Do you mean COPD?

[Hidden]

Yes there are a lot on here with copd

[shadow4me]

My mate told me the hospital told her she had COPS ,I thought that perhaps she had heard wrong and it was COPD but perhaps this does exist ? x

[Hezy-86 in reply to shadow4me]

Yes it does it's a autoimmune disease and I have it in my lungs x

[Nottobad in reply to Hezy-86]

Hi I have two autoimmune diseases. But not in my lungs. I have COPD in my lungs what type of medication to you have. As I have to come off my medication for my autoimmune disorders if I have to take antibiotics

[Hezy-86 in reply to Nottobad]

I am on steroids at the moment but they are not agreeing with me and making me quite ill and have made me insulin dependant. I'm starting chemo next month as an alternative . I also have underactive thyroid and uticaria the autoimmune I have in my lungs is rare

[scobbie1 in reply to Hezy-86]

What is it called I have a rare lung disease I wonder if it's the same mine is EDAC

[Hezy-86 in reply to scobbie1]

Cop cryptogenic organising pneumonia

[Hezy-86]

No cops

[soulsaver]

CAPS - Cryopyrin Associated Periodic Syndromes? capscommunity.com/caps_fact...

[Hezy-86 in reply to soulsaver]

No its cops cryptogenic organising pneumonia

[Christabella153]

COPD do you mean? Yes I have it any advice we are all here

[Hezy-86 in reply to Christabella153]

No it's called cop

[Christabella153 in reply to Hezy-86]

Never heard of it someone else probably has

[barbs47]

Cryptogenic organizing pneumonia (COP) is a rare lung condition affecting the small airways (bronchioles) and alveoli (tiny air sacs). It was previously known as idiopathic bronchiolitis obliterans with organizing pneumonia (BOOP). Hope this helps.

[Hezy-86 in reply to barbs47]

Yes that's it !!! Do you know of any one in here with it x

[barbs47 in reply to Hezy-86]

Hi no sorry I don't know I have emphysema and asthma. You could try asking again and putting the whole name in. Hope you find someone. Good luck. Barbs

[Hezy-86 in reply to barbs47]

Ok no bother like u say it's rare

[Kas38]

Hi Hezy-86, my consultant believe I have COP and I am just waiting for a VATs biopsy to confirm it and to rule out possible vasculitis in the lung. I'm not on any treatment currently, but its likely I will start steroids once/if the results are confirmed. I'm sorry to hear that they have not worked well for you, I hope that the Chemo works well (although I'm sure will be challenging), I didn't realise that that was an alternative treatment! Do you mind me asking whether you had a VATS to diagnose the COP? I could just start the steroids, but have had this since Jul 2016 and so want to get a right diagnosis and treatment plan.... but at the same time am a bit nervous of the procedure. Its very hard to find good information on COP!!

[Hezy-86 in reply to Kas38]

Hi are u in the U.K.? I havnt long been diagnosed with cop but have been on a long journey since 2015 . I have a new consultant he has diagnosed it. I thought that my last doc was rubbish I had every test going numerous ct mri and X-rays was even asked if I kept pegions ! However the new doc said had I not had every thing done what the previous doc had done then I would have had to have the biopsy. Vasculitis was what they originally thought I had. Through the steroids I have become insulin dependant sweating all the time and piled on weight and on the whole feel terrible so am willing to give it a go. And yes your right there's not much info probably because it's rare x

[Kas38 in reply to Hezy-86]

Yes, I'm in the UK. And you? 2015, thats so long! Its such a frustrating condition, but hopefully now you have a diagnosis things will get better. Do you mind me asking what level of steroids you were on and for how long? I am feeling anxious about that.... but if they work of course it is worth a go. Just desperate to get back to normal. x

[Hidden in reply to Kas38]

I was just diagnosed with COP and finished 30 days on 40MG of Prednisone. Starting next 30 days on 20MG. Not sure how much improvement i am seeing in breathing. We restest in 30 days. Curious as to how you are making out.

[Hezy-86 in reply to Hidden]

Hi, since I’ve had the chemo I’ve been put on mycophenalate it’s an autoimmune suppressant keeping my immune system from attacking my lungs. I have my blood monitored every month checking for inflammation. I’ve just had a CT scan and some breathing tests, my lung function was down on the last lest but not by much and I’m waiting for the results of my CT scan. Hopefully there will be no inflammation. Definitely has knocked the wind out of my sails just about sums it up.ihave also had to drop down my manergerial role working full time to shop floor working PT.