Pulmonary Fibrosis but not IPF

Hi at the beginning of March I was diagnosed with ILD and a form of PF that is exhibits ground glass on CT scan.

It seems to respond to high dose steroids as up to last week I was managing pretty well supported by ambulatory oxygen. Regular 1/2 mile walks - on the flat😀and using my electric bike.

I was on 40mg Prednisone until the 16th March when I dropped to 30mg. I have progressively got worse with breathlessness and coughing culminating in an atrocious day/ night yesterday.

I'm due to drop to 20mg next week.

Any thoughts folks - I'll obviously get on to my GP / specialist Monday

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11 Replies

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  • Hi Yonfish, you've got me a bit confused here. PF isn't treated with steroids unless you also have a chest infection. It sounds like you are being treated for something else. Before I was diagnosed with IPF, my consultant thought it might be EAA as my scans showed signs of ground glass. We decided against a biopsy because of the risks involved and eventually, my scans began to look more like IPF. It was important to decide which it was because steroids were appropriate for EAA but not for IPF.

    Take Care,

    Helen

  • Hi Helen. Yes you are right prednisone is not suitable for IPF, however there are several forms of PF some of which respond to steroids. It appears I have one of those forms.

  • But it could move on to IPF.....we too did not opt for biopsy

  • Hi Yonfish

    I too have PF. I am on steroids which started at 40 mg prednisolone but I reduced mine by 5 mg over a longer period of time and I am now on a maintenance level of 10mg, going below leaves me short of breath. My consultant/Specialist Nurse allowed me to do this over a year to stabilise my breathing. Should I get a bad chest infectgion I can up them again and do the slow reduction once its all cleared up. But I also take Mycophenolate 2 gms daily which enabled me to reduce the steroids. This combination works for me and I have had very slow decline in lung function over the last three years.

    Best wishes

    Mollie

  • Thanks Mollie. That sounds sensible. Just had to call out emergency GP as not coping at all

  • Hope you get the help you need. Take care. Mollie

  • Being blasted with o2 anti biopics in high dependency unit - lung infection dammit

  • Sorry to hear you are in hospital but it is the best place for now. Take care and hope you get out soon. Mollie x

  • Sitrep: moved to intensive care ward. Now in fourth night in hospital, and can't sleep mainly due heat wires and noise! Even ear plugs don't help.

    s

  • I am thinking of you and hoping you begin to recover soon. x

  • I also have been diagnosed ipf but have no treatment as waiting to see if my function tests or sats drop to 80 when I will be eligible to have the tablet that apparently helps to slow it down. However noticed vast improvement since I am now taking esomeprezole 40mg twice a day for gerd, so I am hoping that when I see consultant next month there has been no further deterioration.

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