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idiopathic pulmonary fibrosis - uncertainties in diagnosis and medication

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leela37797
leela37797

After conducting the HRCT scan, the clinician did not diagnose the problem as idiopathic pulmonary fibrosis (IPF). On consulting a second doctor due to a worsening cough, we were told that this was indeed IPF. In this visit, a chest X-ray was taken, though due to the rapidity of the consultation the history of the patient was not discussed. Medication (steroidal) has been prescribed.

1. What is the possibility of a misdiagnosis?

2. Given the above possibility, is it advisable to begin on the prescriptions right away or does one wait for a third opinion?

3. What are the consequences of misdiagnosing the precise category of the lung disease?

0 likes, 4 replies

4 Replies

  • neville93106
    neville93106 leela37797

    Posted

    Pirfenidone for treating idiopathic pulmonary fibrosis | Guidance and ...

    https://www.nice.org.uk/guidance/ta282

    NICE recommends pirfenidone as a possible treatment for some people with idiopathic pulmonary fibrosis (see below). Who can have pirfenidone? You should ...

    Get your doctor to look at the above website.   I don't know what the probability of a misdiagnosis is.  I was very short of breath, and an X-Ray showed something suspicious.  This was followed by a scan with a an injection radio opaque dye.  That. Together with the characteristic "tearing Velcro" noise in the chest made a pretty solid diagnosis.  I started on steroids, but then in May 2014 there was a major announcement in the New England Journaof Medicine that Pirfenidone had been discovered and trials had been successful.  It d not stop or reverse the disease, but it greatly slows down its progress.  It has  made a big difference to me.  The side effects in my case are a bit like a mild hangover.  I am still short if breath and tire easily, but life is much better.   I live in France where it has been easy to get the tests and the drug. I believe in the UK it is given out only through certain special hospitals such as Paoworth  which specialise in respiratory problems.  But it's DETINITELY worth trying it.

  • neville93106
    neville93106 leela37797

    Posted

    In February 2014 I was diagnosed with IPF on the basis of an x-ray, an MRI, and a specialist listening to the "Velcro noises" in my chest.  I was put on steroids and began taking them in March.  In May 2014 I read about Pirfenidone  (Esbriet) in the New England Journal of Medicine where it said a large clinical trial had shown that it could greatly slow the disease.  I asked to use the drug and began taking 3 pills three times a day of Pirfenidone in May 2014.   There were no serious unpleasant side effects.  I also take steroids once a day.  I have had regular blood tests and there are no signs of malfunctions in blood, liver or other enzyme systems.  I also have a Phillips "SimplyGo" oxygenator that let me travel by train and plane from Nice to London for Christmas.  I had one chest infection that was cured withe antibiotics (NOT tetracyclines which reduce the effect of Pirfenidone )Try to get a MRI scan or something similar that gives much more detail than an X-ray. And get an appointment with a chest specialist not just a GP.   What you need is the best scientific examination, not the opinions of those of us who are on the internet.

    on the basis of the scientific evidence from my case I strongly support the use of Pirfenidone .

    i have just had my third MRI scan today 4th January 2015 and there is no sign of any change in the status of the disease , so I recommend this treatment on the basis of the scientific evidence,p.

    • swastya100
      swastya100 neville93106

      Posted

      Dear Neville93106,

      Thank you for breathing some hope to those who are going through this condition. My mum has been recently diagnosed with IPF and over the couple of months she has been using pirfinedone 200mg 6 tabs daily. She is also been given a low dose steroid once a day. What is the steroid that's given to you & what is the dosage you're taking? My big question is.. does it really affect pirfinedone if steroidal medications are not taken? Any thoughts? My prayers for you.

  • neville93106
    neville93106 leela37797

    Posted

    Hello, I am glad that my messages give you some support.  The steroid I take is prednisolone, and my consultant says that if I feel a rough throat it will help.  This often happens after talking, for example at a dinner party.  He says double the dose for a day or so.  I think the difference us that steroids in general reduce inflammation, while Pirfenidone is specific to the problem of scar tissue building up in the lungs. Don't take my word for it.  I am not a medic or expert in pharmacology, although I did study the latter at university many years ago.  

    I am certainly more exhausted and out of breath than a year ago, and have had to cancel a cruise, but none the less I can still go for gentle country walks, with the aid of a portable oxygen system called "SimplyGo" made by Phillips and which is available on the French NHS.  I think I have at least another year to go with luck!

    good luck.

    neville

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