In June I had my 4th lung function test since my IPF diagnosis back in 2020. My first test was 79% total lung capacity which made me a candidate for anti fibrosis treatment. Last year after a bad chest infection it reduce to 78%. After pulmonary rehab and face to face sessions with a breathing physio (I was breathing incorrectly) My lung function is now 81% !!! I had video call with the Brompton yesterday, who gave me this news. He was so delighted with me, I think I had one of the best days for a long while, feeding off his elation. It proves that Nintedanib and Pirefidone (which I'm on) has worked to help the progression of this nasty disease. Ofcourse this medication has nasty side effects which are currently really getting to me. Indigestion and lots of pain. Dr agreed that I should take a 4 week break from my meds while on holiday to Greece in September this will rule out meds if symptoms persist, so fingers crossed that symptoms will disappear otherwise will probably need further investigations.
Sorry for such a long message, but wanted to share x
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Suzie42
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Thank you. Yes will be cooler then. This will be our 32nd year to the Greek islands and always go Sept/Oct. the sea is warm for swimming, cannot wait xx
I was on lansoprazole a few years ago. It worked well but after a year my joints were really stiff and I had difficulty getting up and starting to move. My hair also fell out. Luckily after coming off everything returned to normal. I’m now on esomeprazole, I’ve been on it for several years with no side effects.
That’s such brilliant positive news, I’m so pleased for you. Have a fab holiday and hope you feel good throughout. It’ll be great to have a reduction in medication for a while! Have fun. X
Sorry you have been feeling low Suzie but am sure you will feel on top of the world when on holiday, it will do you the world of good. My daughter did a slot in Cyprus and I spent a couple of weeks over there in late September one year and it was still blinking hot but a lovely dry heat. Have fun x
Hi Suzie im on Nintedanib too & all my lung function tests have slwsys been very low I have 2 sprays Ventolin & serevennt. When going to a lung function test i have to have the smallest blower they have because the bigger onenmaked me gag so i dont like doing them
Hi, I am now on Pirefidone as Nintedanib gave me horrid side effects. I think when my consultant changed me from Fostair to Trimbow last summer my breathing improved asthma wise. I used to get peak flow of 300 max but now get 390.I hate the lung function test but luckily doesnt make me gag
Hi suzie42 so glad you shared this as I recently had a lung function test and I haven’t had results yet so I don’t know what to expect. This gives me something to think about. I’m so glad you got good results. xx
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I'm not surprised you wanted to share!! Well done you!
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