Flare advice: Hi there. I'm having a... - Living with Inter...

Living with Interstitial Lung Disease (ILD)

Flare advice

Pilotlight profile image

Hi there.

I'm having a Flare up of my ILD for two weeks now taking 30mg Prednisone, usually I see improvement after 1zt course but I'm on my 2nd pack and only slight improvement!

My question is how long do these flares take to get undercontrol and how many courses of steroids is needed.

How do you guys manage your flares.

Waiting for a call back from ILD nurse but think I've been forgotten 😒

7 Replies
Dot_ChestILD profile image
Dot_ChestILDAdministrator

Hi!

I’m so so sorry for you’re flare up. I definitely would keep calling nurse until you get a response.

Sometimes, you might need something else thats stronger that’s why it’s important for you to keep getting a hold of doctor.

As for a timeline, everyone is different. But Usually a few days not more than a week.

Hope you feel better.

Thank you for your replyI am getting worried things don't seem to be improving, Ive been diagnosed a year now and with pandemic no treatment plan yet.

Thanks again

Dot_ChestILD profile image
Dot_ChestILDAdministrator in reply to Pilotlight

Hang in there. It’s been so hard for everyone in this pandemic. You’re not alone!!! I think we’ll skipped so many doctors appointments. Please hang in there.

Do you have a pulmonologist? Are you seeing a Specilaist? What have you been diagnosed with?

Sam_ChestILD profile image
Sam_ChestILDAdministrator in reply to Pilotlight

Hope you start to feel better soon! It’s been a hard year but thanks to virtual visits being a popular option hopefully you can reach out to an ild doctor to discuss a treatment plan. Where are you located?

Hi, I'm in South Yorkshire,I have had chest infection one after the other but this is the 1st flare I've had without infection cause. 2 packs of Steroids and little improvement is worrying me....is this called 'progression 😒

Sam_ChestILD profile image
Sam_ChestILDAdministrator in reply to Pilotlight

Progression can present in different ways - sometimes faster sometimes slower. I hope you have been able to connect with your doc

Dot_ChestILD profile image
Dot_ChestILDAdministrator in reply to Pilotlight

Please let us know when you had contact with doctor and if don’t have a pulmonologist I suggest you get one.

Good luck 💕💕