Progression of IPF
I am 61 years old and was diagnosed with IPF in March 2018 and went on to Ofev (Nintedanib) here in England in November 2018.
In November 2020 my FVC was 67% down from 74% in November 2019. In October 2020 I had my flu vaccination and for the first time my pneumonia vaccination at the same time. After the vaccination I had what I believe to be an exacerbation. That night I was shivery and cold but that went away after a day however my lungs felt uncomfortable and I begain to suffer with bloating which was uncomfortable and caused me to belch often. By November 2020 when I saw my consultant I was feeling a lot better but since January 2021 this has returned. After my first covid vaccination on 4th February 2021 I again felt shivery but not as badly but the feeling of my lungs hardening and the belching has got worse but what has now occurred is that I cough during the night when lying down to sleep and first thing in the morning for maybe 5-10 minutes and then on and off during the day. If I go to the toilet I immediately start coughing after a bowel movement. The cough is a productive cough and I have been prescribed Carbocisteine 375 mg capsules 2, 3 times a day to loosen the phlegm so I don’t cough so hard and Colpermin which are peppermint oil capsules 1, 3 times a day to relieve the belching. I am due to have my 2nd Covid vaccination shortly.
I suffer with diarrhoea around 3 times a week as a side effect of the Ofev and take loperamide for this which works. Occasionally I vomit and take lansoprazole once a day 30 mgs to stop this from occurring more often.
I feel that my walking is slowing and I am getting out of breath when I wasn’t before and if I lean over and brush my ribs against the arm of a chair it is sore and hurts. I don’t know if this is caused by my lungs hardening or them touching the chest cavity.
I feel my breathing is more shallow then it was just 3 months ago.
Is this all part of the progression of the disease. I only see my consultant once a year and in the 6 months period in between go to a nurse led clinic. The problem is I find that the consultant is always busy and does not want to get into a deep discussion about my condition as she has other patients waiting and the nurse only asks me how I have been since the last visit to the consultant and makes notes but nothing else. So it is very difficult to get definitive answers from them. I am due to see the nurse later this month (April 2021).
It is also worrying as in the UK if you decline 10% or more while on Ofev they take you off the medication which as far as I am aware no other country does and I think that is all down to the cost of the drug to our health service.
I am still working full-time but am concerned as to how the disease is progressing. Any comments would be helpful particularly from those who are having the same experience.
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