Scared

[Hokeycokey]

I appear to have NSIP of the fibrotic type which isn't exactly the best news.

The last ten days I have become breathless when walking which annoys me.

Has anyone any tips please?

[Salfordlass]

I have NSIP The team originally thought I had Cryptogenic Organising Pneumonia . I think I have the cellular type of NSIP but my recent scan showed minimal fibrotic scarring......so am not too sure. I am doing ok but am still on 11mg a day of prednisolone. I am due to start Cellcept fairly soon the idea is this may help me to reduce the steroid dose. I was diagnosed in April 2014. I hope you can get the right treatment that suits you.

My advice would be to get yourself a pulmonologist who is experienced in treating ILDs

I was diagnosed a few weeks ago with Sjorgens Syndrome (an auto-immune disease) this has apparently caused my lung problem. My respiratory said this is a 'good thing' apparently this may mean my ILD is not so severe? A difficult illness to deal with but we are not alone

Best wishes

Sheila

[Hokeycokey in reply to Salfordlass]

I should have investigated before I replied. I think my consultant is very good and knowledgeable and persistent.

[Hokeycokey]

How are you getting on with the prednisolone?

I know nothing about pulmonologist ... I will investigate thanks.

Yes a difficult illness and I don't think there are too many of us!

Thank you for replying.

[Salfordlass]

Now my pred dose is down to 11mg I am ok but have gained lots of weight.....but at least I can function

Take care

Sheila

[Hokeycokey in reply to Salfordlass]

Doesn't appeal to me to take it but think that is what will be prescribed .... how much is lots of weight, roughly .... I'm desperately trying to lose at the mo!

[Kathleen101]

I have had to slow my pace alot in order to do any distance. It's frustrating yes, but unfortunately that is the only way I have found I can walk without getting short of breath. If I try to go at a normal pace I can only walk 50 feet before getting short of breath, whereas if I walk considerably slower, I can walk a couple of kilometers.

[Hokeycokey]

I've not been prescribed anything still except a biopsy so just keeping going. My breathlessness is, yes, fast walking on the flat and up any sort of incline. I'm able to hide it from others but I can feel it.