Ipf or pulmonary fibrosis?

Saw consultant yesterday for results of the hrct scan and lung function tests. Told that I have had a deterioration of 25 and 20 per cent on function tests. Thinks I have ipf but not able to confirm without biopsy which she doesn't recommend as too invasive due to my age and other problems I have, but still thinks it is ipf. No treatment other than steroids but does not recommend. Not able to take esbriet because my breathing was 91 and nice does not allow this drug to be prescribed to people who has over 80 per cent. My question is what happens to all people with ipf who cannot be given this slowing down drug? Go back in 4 months to see if further deterioration takes me to the level I can be accepted for this treatment. Very confusing!

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9 Replies

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  • G'day Winfar

    You sound like you have a good Dr. Lung, biopsy is definitely not the way to go.

    I would be asking for another H.D cat/scan, this is the best way to establish what is ailing you.

    If your lungs have , as you say, deteriorated aprox 20% the sooner you can have the illness identified the better.

    Any lung condition must be treated as serious, but please do not start ringing the alarm bell.

    We have seen many who were wrongly diagnosed, but.................

    Regardless of whatever the Dr decides there are a couple of things you can do.

    1. If not already on one...Start a healthy diet and stick to it.

    2. Exercise your lungs...this does not necessarily mean pushing your body as most of the lung rehab exercises are done in a supervised Gym and consist of exercise bike..walking up and down a couple of steps..stretching the upper body (usually done with elastic strips)...breathing exercises.

    If you are diagnosed with IPF or PF you will find there are 3 levels using the %

    Slight 85...65

    Moderate 65...45

    Severe 40.......

    You indicated that the loss is around 20% which would place you in the slight group.

    Keep pushing your Dr and try to have another lung function test during your next visit.

    Keep a record of all the tests, buy yourself a finger oxymeter (cost around $20 aud.) and maintain a diary of your health issues including the results when using the oxymeter. Also write in the diary all the questions you want to ask the Dr when you visit. We learned that we forgot to ask questions because they were not written down.

    Please do not worry...as I said earlier...Many have been wrongly diagnosed.

    Will (Australia)

  • Thanks for your reply burraboy. Will get my function tests checked.

  • Thanks a million Will you have answered so many of my questions.

  • There are other dugs that work in a similar way to ESP. Ask your consultant about them i.e. Cellcept. And MMF combination drugs

  • Thank you for your reply,Patricia Potts. This consultant seems not to want to put me on any drugs. I was first diagnosed by her 5 years ago and had 6 months scans then, as they were showing no changes she said she didn't think I had a lng condition even though the scan shw d fibrosis with nodule. I was duly discharged with no follow up or treatment and was now under heart specialist after having 2 stents due to narrow d artery and 80 per cent blockage and told breathlessness and chest pains due to angina. Many stays in hospital due to these attacks and repeatedly told heart condition was not causing them so discharged from heart clinic. After obvious deterioration my doctor referred me back to ild clinic the results of which shows decline but not enough to treat me with pirefidine and only offered steroids. As I have deteriorated 25 and 20 per cent since my last spiro test 6 months ago it is, I think, a rapid decline. My age of 82 (in a couple of weeks) together with other health problems is against me . My daughter has told me to ask if I could go on a clinical trial as they are recruiting now, but nit sure if that would be any good for me. My walking test, while I was using my rollator, went down but back up to 91 so I am classed as ineligible by NICE. I will ask about those drugs you mentioned when I speak to clinic nurse who I am waiting to return my call. Thank you for taking the time to answer and listen, which I find, ,unfortunately, consultant makes plain she does not have.

  • Nice regulates certain drugs for over 70 yrs. but as I am over 70 and under the care of the Brompton Hospital, I can assure you that MMF treatment is available to you should it meet your illness.

    Always press to know the logical reasons why certain treatments are not offered to you.

    ILD/IPF differs how it affects each person. And is treated by trial and see what works for you.

    It is Your life and the service is for you to access

    Be Persistant to know where you are in your IPF and what options are available to you

    Having reasonable lung capacity has, on many occasions, nothing to do with the drop in your SATS.

  • Spoke to nurse who said those drugs were no use for me. Have to ring and not wait 4 months if I am not too well and will see me sooner she said a lot of people can't take the side effects but I need my breathing to go down another 11 per cent and then I can take perifidine. Asked about trials and told they were no us for me too. Thanks for your concern .

  • What we are prescribed does not just depend on our diagnosis but also other conditions we may have, other medications we may be taking and what is best for us individually. Always best to be guided by your consultant rather what others may be taking. :)

  • Yes I realise that but hard when you feel like you are being overlooked, even if you really know you are not. Not a nice diagnosis to get but as you say can only go with the consultant and I think when get as old as me you get to think it's all about your age. Thank you for your input which puts things into perspective.

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