Help in understanding my diagnosis

[ShebaAlfie]

Does anyone have Cryptogenic Organising Pneumonia?

[Hidden]

Hi ShebaAlfie

I don't have Crytogenic organising pneumonia, can only point you in the direction of the BLF's page on it for a better understanding:_

blf.org.uk/support-for-you/...

Hope this is of some help.

If you are living in the UK don't hesitate to contact the nurses on the helpline for further advice and understanding. Office hours Monday to Friday

blf.org.uk/support-for-you/...

[Hidden]

Hi ShebaAlfie,

I do and was diagnosed March this year. What can I help you with?

Mick

[ShebaAlfie in reply to Hidden]

Hi Mick, I was told I had an auto immune disease for 8 years and just this year was told I didn’t but that I had COP. What medication do you take and how do you manage your condition? Does it restrict you from working? What’s the long term prognosis for this disease? Thanks! Sonia

[Hidden in reply to ShebaAlfie]

Hi Sonia, I'm a asthmatic diabetic with hayfever and rhinitis. Can't get more auto-immune than that I guess! Had a bad cold in March this year and, two days after recovering from the cold, my O2 stats were 82 at rest and going to low 60's on any exertion and I was admitted to hospital. Initially diagnosed with double pneumonia and put on O2 at rate of 2 broad spectrum IV antibiotics. Worsened but was too unwell for a biopsy and O2 rate was up to 8. They suspected COP and put me on 60mg oral steroids and, after about a week, recovered and tapered off O2 dependence and regained lung function. My treatment is still oral steroids along with antibiotics with the steroids now at 9mg daily and dropping at 1mg / month. Long term seems fairly good. I continue to drop the steroid dose and hope to cease completely. I've been told I can relapse but the treatment remains steroids. You will have to contend with long term steroid side effects but work should be possible. I don't work due to other medical conditions that pre-date this. Compared to before, I feel like I have a new lease on life and I'm walking and playing with grandkids again.

Hope that helps,

Regards,

Mick

[ShebaAlfie in reply to Hidden]

Hi Mick

Thanks for the message as it was good to hear about your management of your condition s. I get chest infection after chest infection and take antibiotics and up my steroids at that time. The rest of the time I take Mycrphenolate 1500 mg daily. I have O2 for exercise as the 6 minute test showed my oz level fell to 75 but atbrest I am at 95. If I loose weight and get more muscle I hope to improve my O2 transfer. I have no idea how I will progress and if I am set to get better but I am optimistic. I I work full time but finding rushing to meetings and doing presentations can bring stress and that brings breathlessness. I have been given a small dose of anxiety medication which has helped.

Thanks again! Wish I had some Grandkids! Still waiting for my sons to pick wives!

Sonia

[tomhatha]

Hi, I just put things on here when I find things that people are wanting to know about I send out all the latest in medical science every day on Twitter so ,if you're interested it is tomhathaway@ twitter