[Keith Emery]

Hi, I feel for you, while I already had mild IPF in June 2021 while on holiday in Portugal, I contracted COVID-19 on day two. I was very ill and my breathing was badly affected, I literally couldn’t walk ten yards without having to stop and rest. Once I returned home to Scotland my breathing became much worse and eventually, I collapsed and was rushed into ICU at the Hospital. I was immediately put onto oxygen and the admitting Doctor was shocked at my blood oxygen level which was down at 40% – I was lucky to be alive at that point. After a month in hospital, I finally got off oxygen and was allowed home. My consultant said that when I was admitted into hospital I was riddled (his words) with Covid which had ravaged my lungs and doubled the size of my PF scaring. I also had two bouts of pneumonia while in hospital which didn’t help.

At home, I was a poor old thing who could not do anything, so oxygen at home was prescribed and OFEV 200. Since that time I have improved significantly and I now attend a vigorous rehabilitation workout weekly, albeit with portable oxygen. I do not need oxygen when walking about but if I walk up inclines or exert myself, I certainly do. I will not get better and understand IPF will shorten my life – so I am trying to make the most of it. I have purchased at great expense a portable Oxygen Concentrator which is approved by all airlines, so overseas travel is now available to me again. I perhaps should add that I am a reasonably active retired 76 year old. Best wishes to you all! Oh and by the way, HAPPY HOGMANAY and a happy New Year!

[Keith Emery]

Great to hear of all these remedies to help with the side effects of OFEV. I too have suffered, mainly with nausia and vomitting, but from time to time diarrhea also, frequently both together on the same day. I have discovered that a reasonably substantial breakfast helps me, namely a plate of instant noodles before my pills and ‘hey presto’ no side effects! I have been on OFEV now for 09 months @300 mgs a day. Hope this helps – at least worth a try for some.

[Keith Emery]

Yes Gavin, I believe it is. I have IPF which never really bothered me greatly and I was fit and active at 74 years of age. Whilst on holiday in 2022, I contacted Covid 19 which ravaged my lungs and disabiletated me to the degree that I was hospitalised for a month. After a slow recovery of about 6 months my Consultant organised a CT Scan for me. The results showed that my fibrosis had more than doubled in size and a further breathing test revealed that my lung capacity was down to 62%. The result was that I then prescribed Ofev drug, which will not cure my IPF but will slow down its progression. I am so privileged and all due to the CT Scan.

[Keith Emery]

Hi Maria, I too started Ofev in January 2023, now into week 10. I have nausea and vomiting together with Diarrhoea several times each week and lots of wind/gas. My Consultant Pharmacist assures me that through time this will pass. I am determined to stay with the drug as its benefits outweigh the drawbacks i.e. slowing of the progress of the fibrosis which lengthens my life span, albeit for a few years – the alternative is worse, in my opinion. Persevere Maria, best wishes.
Keith

[Keith Emery]

Hello from Scotland,
I was diagnosed with IPF in September 2015 after a bout of pneumonia. All was well during the ensuing years, until our holiday in the Algarve, Portugal, in June 2022. I contracted Covid 19 over there and became seriously ill and hospitalised for a month, as the Covid 19 had ravaged my pulmonary fibrosis and doubled its size. Consequently, after breathing tests, I was prescribed Ofev and commenced my treatment in January of this year. I was given a choice between the two drugs but I chose Ofev because of the possible side effects of Esbriet (we are outdoor lovers and spend a lot of the year in the fresh air and sunshine [not too much of that in Scotland, so we have to take advantage of it]). I have now been taking Ofev for about eight weeks and suffer the side-effects of nausea (most days), vomiting occasionally, diarrhea from time to time but frequently constipation. I have also put on an incredible eleven pounds of body weight since starting on Ofev, my eating regime has not changed and I cut out alcohol for a month to see if that helped. This seems to differ from most other Ofev users that I have read on this forum. My Consultant believes that my scarring may have come from Tuberculosis when I was a baby. I know I was never a long-distance runner and although I played sports up to the age of thirty, I was always breathless throughout.

[Keith Emery]

I have severe knee pain at night when in bed and occasionally during the day. I was diagnosed with IPF in September 2015. Covid infection has caused the scarring to double in size so I am now being treated with Ofev – just started

[Keith Emery]

I was diagnosed in September 2015. I am 75 years young and still going strong, although I caught covid in June 2022 which added to the scaring significantly. I have now been approved for drug treatment to slow the progression down and apparently extend my life by up to a further three years.

I do get highly breathless when undertaking any physical activity, but I can recover quickly. So I just carry on as normal! Dog walking, gardening, and DIY for instance, I just have to take little breaks every now and then. I trust this will help and encourage you.

[Keith Emery]

Charlene, I agree with you entirely. Rest does not help with my IPF breathing problem. Only if I become breathless through activity and need a few moments to recover, do I see rest as helping. I try to push myself when walking so that my lungs are exercised, although I probably can only walk 100 yards before having to stop to catch my breath. Resting in a chair or bed does not help me in any way.

[Keith Emery]

Really? Have you had medical advice about this, please?

[Keith Emery]

I was diagnosed with IPF in October 2015. Fortunately, it was progressing slowly and my breathing range was just a little below normal. However, in June 2022 we went on our long-awaited holiday (due to Covid 19 restrictions in previous years) to Portugal. Within two days after arrival, we were both struck down with Covid 19. My wife recovered reasonably quickly as did I, except for severe breathing difficulties, I could only walk about 10 yards and then had to stop and rest.

On my return to the UK. my breathing became worse and I was rushed into hospital intensive care for a month before I was no longer reliant on oxygen. I have improved significantly since discharge but still suffer breathlessness after activities such as walking or exercising.

My consultant pulmonologist decided that I should undergo a CT scan of my chest, to see what was going on. She identified that due to the ravages of the Covid 19 attack, my fibrosis had more than doubled in size, causing my breathing difficulties. Consequently, I have recently been prescribed Ofev to try and slow the progression. Covid 19 in my case then can/does affect existing IPF – I hope this helps a little.

Keith