🙄??help

[Dion3844o1]

Hi all I recently went to see my specialist in Leeds who informed me my lung function had fallen by 10% which I already knew and then received a letter FEVI 59% FVC 63% TLC 60% RV 53% and gas transfer predicted 53% can anybody explain this to me plz? Also at the moment I'm on Mycophenolate 500 twice a day inbetween antibiotics but the specialist said I should be on higher dose and has wrote to my rumathologist to up the dose to 750mg twice.a day in the meantime im due a CT scan on 31st march and if my condition is worse and tablets not working I am having a IV with cyclophosphamide and then Back to MMF afterwards ,can anyone tell me if they have been in a similar position I have had a drip at home before but not sure if I'd have to have this home hospital and it's the side affects as well I'm also thinking is it chemo or totally different I'm trying not to worry.but nothing else as worked in 3 and half years ,😒

[hypercat54]

Hi the most important figure is your FEV1 which is your lung function. FVC stands for forced vital capacity, and the gas transfer is the rate of transfer from the aveoli at the bottom of your lungs.

stone-UK is best for explaining all of this as he understands it. I wouldn't worry too much about the other figures apart from your FEV1 to be honest. x

[Katinka46]

Hello Dion

I have been having a quick look at your posts. I am not quite sure what your lung condition is? Is it caused/related to your RA? I know that RA can have a disastrous effect on lungs. You need a proper conversation with your consultant. Pulmonary function tests are very good at diagnosing and assessing lung disease but they are very complex. Members with COPD tend to concentrate only on the FVC and FEV1 but in my condition, for instance, the RV is highly significant and my FEV1 doesn’t look too bad at 58% predicted but my symptoms are much worse than that would suggest. It is vital that you get your doctors to go through it with you.

K

[Dion3844o1 in reply to Katinka46]

I have pulmonary fibrosis with mixed connective tissue disease x

[Katinka46 in reply to Dion3844o1]

Thanks. I thought it must be. The numbers were suggesting a restrictive disease with reduced lung capacity. A bugger. So sorry. And I imagine the connective tissue disease justs adds more complications and uncertainties. Double bugger. I hope you feel that you are being well looked after in Leeds. My consultant is in Leeds but in a different specialism: CF and bronchiectasis. And me, something of an outlier, just to add to his problems.

Keep us informed, especially about the CT

K x

[Hidden in reply to Katinka46]

We probably have the same consultant! I assume the poster’s consultant is the other asthma consultant, Dr. Sutherland, as his other special interest is ILD. Leeds’ respiratory team is particularly good so I feel you’re in safe hands

[Hidden in reply to Katinka46]

Oops Katinka that message was to you at the start and the poster and you at the end lol

[cofdrop-UK]

Hi Dion

I hope things become a lot clearer once you have had your ct. I too attend Leeds but not Dr. S. I see consultants within the Bronchiectasis Service.

Good luck

Cx