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British Lung Foundation
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Can anyone tell me if my tests are concerning please.

I have looked online and cannot decipher my results. They are as follows

FEV 2.33 litres 109% predicted

FVC 2.74 ........ 123% ..............

TOTAL LUNG CAPACITY 113% predicted

RESIDUAL VOLUME 1.66 142% predicted

TLCO 56% predicted

KCO 60% predicted.

My brief history is, I have lupus, vasculitus, sorgrens, aps and others. I was prescribed methotrexate for lupus, and it has been stopped due to lung and liver side effects. The drug made me cough violently for the 18 months I was on it, but Drs ignored my complaints about it. When they finally listened and stopped the drug, it was panic stations, with ct scans, and x rays. They diagnosed lung damage to the top and bottom of my lungs caused by lupus and the methotrexate. They gave me a salbutamol pump which makes me cough so I don't use it. Sent for PFT, and they now deny their diagnosis from ct scans. Because I used to smoke, they are saying its emphysema. They don't want to see me anymore, and the cough went, once the drug was out of my system. When I have a lupus flare, my lungs will then be tight. Should I worry, I don't get wheezy or chesty when well. Am always reading posts on this site, and think you are all such a happy bunch. I never contribute as I feel a fake, compared to your problems.

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Hi 6161 the best people to interpret your results are the BLF nurses, you can phone them at the number they give you if you click on the red button at the top right of this page

I know nothing about Lupus so cannot comment further

I hope you get the help you need

Love Sohara

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I agree with sohara, BLF helpline during the week and also GP and pulmonary nurse. A telephone call to these should help. Your GP and your consultant will interpret these for you in your own context. Without knowing you better, It's impossible to give you any assessment off hand.

Hi sorry cant help with breathing tests i dont even understand mine!! I have rheumy but im on sulfasalazene due to what you have experienced they put me on this one. I have breathing problems which were wrongly diagnosed and treated as asthma for the ladt 20 yrs so still undergoing tests at min. If you are having breathing problems are you seen by respiratory specialist? If not ask for referral ...they have expertise in management plan so you dont do more damage to lungs. My ct and xrays came back clear but im still having breathing trouble so have had to stop all my antibiotics steroids to see consultant in two weeks time for more tests. Your lupus could be affecting your lungs but you need to speak to blf or your rheumatologist to get more information. My advice from someone who was messed about for a year by incompetent previous consultant ....shout loud for your treatment and to see expert if your not getting that ask for second opinion to another specialist thats what i had to do at xmas . Let us know how you get on Judith xx

Thanks tiger shay, I was just dismissed and not given any advice. Am backtracking now to last October when I got these results. Had 4 ct scans, laying on my back and front. Chest X-rays were suggestive of bronchiectasis, my rheumy talks about the meds and lupus damage, and the letter from thoracic, ( my only ever appt,) said we need to discuss your results as your " lungs do not appear to transfer oxygen as efficiently as they should." As I said, I was in and out of appt in 5 mins, with the Dr saying they don't need to see me again. Do you think they had the wrong notes, or something. I do cough a lot when my lupus is flaring, but usually I don't have problems. The only prob I do have is that I cannot hold my breath. Other than that, I don't need any more troubles. Thanks again.

I would be asking for a second opinion referral to another consultant. My problems started 20 years ago i got a chest infec which went to pneumonia took year to get back to normal self. Year later i noticed i was very breathless so went to gp saw locum took peakflow was 250 ( iwas 32 ar time no other probs except the pneumonia) she gave me steroids for week went back peak f back up so gave me diagnosis asthma and blue brown inhalers. Until five yrs ago i had no probs but winters fell me but the asthma nurse just gave me more inhalers ...until id been ill xmasfor 3 yrs on trot i asked to see specialist who was useless thisyr i asked second opinion and finally have had tests scans etc im not asthmatic!! But they dont know what as yet . Shout loud to be seen xxxx

Sorry can't help you would need to talk BLF

Best to chat these results over with your doctor, the doctor who ordered them or the BLF help line if you have not already tried this?

Thanks to all for advice. Rang BLF today, was told my first 2 results are normal, but they didn't know what other results meant. Was advised to go for a second opinion to clarify what is going on. Nurse agrees that something is amiss. !!!! Thanks again

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Residual volume. The amount of air in your lungs after you have exhaled completely.

TLCO (AKA DLCO) = transfer factor for the lung for carbon monoxide

KCO = transfer coefficent i.e. Diffusing capacity of the lung per unit volume

ncbi.nlm.nih.gov/pmc/articl...

(See section on Diffusion Capacity about half-way down)

Thanks stilltruckin, have been lost on the web for ages. Can't decipher as they do not say what normal TLCO, KCO, should be. I must be thick!!! Haha. Thanks anyway.

emedicine.medscape.com/arti...

[Quote] . . . The degree of severity of reduction in the diffusing capacity can be assigned according to the following scheme: less than the lower limit of normal (LLN) but greater than 60% of predicted is mild, between 40 and 60% of predicted is moderate, and less than 40% is severe. . . . [/quote]

(The LLN (lower limit of normal) TLCO is 80%.)

regionalmedicine.blogspot.c...

[Quote] . . . The Krogh constant (KCO or DLCO/VA) is an attempt to adjust the DLCO for differences in lung volume. It follows that when a KCO does not correct to normal there is likely to be an abnormality of the lung tissue. . . . [/quote]

(VA is alveolar volume, basically the same as the total lung capacity)

You are trying so hard for me and I really appreciate it. You obviously know the answer so please put me out of my misery, lol... If TLCO NORMAL LOW IS 80%, and mine is 56%, am I , mild moderate or normal??? Am used to unwanted conditions, so am not worried about results, just thought I should check to see if I should be 'looked after', by Drs for this. Please don't worry I will ' hold you to it', it's just speculating with experienced sufferers in my opinion. Thanks again, I will understand if you don't.

The severity of your condition is at the high end of 'Moderate', just below 'Mild'.

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Thank you very much. You have been very helpful. Take care

Methotrexate is notorious for causing lung fibrosis in some people. although I took it for 8 years (25ml injections for RA and Sjogren's) and it didn't bother me at all. Although I do have Bronchiectasis!

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Yes the metho has also left me with an inflamed liver. If I had said I used to drink, which I don't, they would put it down to that. Thanks for reply

My friend was put on Mithotrexate and she had severe breathing problems and damage, she was taken off immediately. Her consultant said it was side effect of the drug. Don't know why they still prescribe them. Best of Luck

Once again, thank you to everyone who took the time to read and reply to my post.

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