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I have pulmonary fibrosis - should I be going to my GP everytime I think I have a chest infection or just ride it out?

SMS2006 profile image
13 Replies

I am starting new treatment soon because the inflammation has increased on my lungs. Don't want to keep bothering the doctor. Just not sure what to do. Any advice greatly appreciated.

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SMS2006 profile image
SMS2006
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13 Replies

My husband suffers with Copd so not sure if this is relevant but he always needs to go to the doc with an infection. Would have thought you would be better to go and just check. Infections can do damage. Please take care and look after yourself TAD x x ps you could also ring the blf helpline

As Tad says.

Definitely don't ride it out SMS. see the doctor asap, or attend walk in clinic, you need professional advice on this from your doctor. You risk further lung damage if you don't treat lung infections. You can check with your doctor about having an emergency pack of anti biotics and steroids at home.

Check with the helpline in the morning after 10 am for more information.

You may find this blog a useful read as well:

healthunlocked.com/blf/post...

Best wishes BC

SMS2006 profile image
SMS2006

Thanks very much... I wasn't sure x

weeannie60 profile image
weeannie60

hi tad i have ipf too and was told by my own gp first sign to go to surgery or phone out of hours so dont leave it it will only cause more problems tc anna x

johnwr profile image
johnwr

Every time that you have an infection, you stand a chance of loosing some more lung capacity. Arrange with your doc to have a pack of antibiotics and steroids at home ready to use. When you start them, you can replenish with repeat prescriptions. Most doctors will accept phone calls or return them from high-risk patients. Use that facility to let your doc know you have started the meds. If your doc has any concerns, they will make arrangements to see you , or ask you to come to the surgery.

breathe easy,

johnwr

in reply to johnwr

Sorry John - your post hadn't appeared when I posted my comment! I agree with your comment apart from steroids are not recommended for IPF. :-)

I have IPF and always keep an emergency pack of Doxycycline in case I start with a chest infection. This was my GP's suggestion because he knows you can't always get a quick appointment & also Bank holidays/weekends can be difficult.

As soon as you start taking them get an appointment booked and/or order another emergency pack.

SMS2006 profile image
SMS2006

Thanks all.... much appreciated

Gidge profile image
Gidge

Hi - I know we are all different, but my husband has fibrosis - we keep rescue meds handy, he has really sudden onset infections - once his temperature rises, as soon as he has settled a bit with paracetamol to get the temp. down, and I'm sure he's stopped throwing up, give him 2 Doxycylcine and 30mgs of Prednisolone - although the pred. is not an ongoing treatment for the fibrosis, when he has an exacerbation of any kind it really helps to damp down any inflammation that sets off. The dose is decreasing, ie 30 mgs for 3 days, 20mgs for 3days and so on until we get to nil. you need to talk this over with the GP as it may not be appropriate for you, but that's what we do. A course of Doxy. is 8 pills - he has 2 initially then 1 a day until the course is completed. It has happened so many times now we are OK to just get on with it, but I do let the GP know we have started the treatment. I don't wait to try and get hold of a Dr any more because that just delays things - good luck !

SMS2006 profile image
SMS2006 in reply to Gidge

Thanks. I got a course of doxy too so hopefully that will help :-)

Hollyhockhattie profile image
Hollyhockhattie

Hi there..... I was told to book an appointment to make sure its an infection beginning and if I couldn't get one asa to pop along to A+E as its that important to keep the scarring from progressing. Their your lungs.

All good wishes to you

Holly.

SMS2006 profile image
SMS2006 in reply to Hollyhockhattie

Thanks Holly, much appreciated.

Cressie profile image
Cressie

Hi, I have IPF and my consultant told me to always have two packs of antibiotics in the home (she started me off with co-amoxiclave 625) and to start taking them if the phlegm changed colour, or if I had a temperature or felt unwell with it. I have taken steroids from the beginning, two and a half years.

A good question for Tuesday nights broadcast perhaps?

Keep well all.

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