Been for this today as I get out of breath easily.
Didn't know that breathing into a tube could be so difficult or complcated!
Nice lady told me that I have some lung scarring and that my lung capacity is not as much as it should be, she thinks they will send for me again in a few months for a follow up test.
I am already on Azathioprine, which she said was a good thing.
Not sure how I feel about it, I still only have a diagnosis of Conective tissue disease, but does this result mean it's going more down the Lupus route?
Written by
Swizzle14
To view profiles and participate in discussions please or .
I had this last year after suffered from severe breathlessness when talking or standing. It was becoming embarrassing. She told me my results there and then. Said there was some damage from a severe lupus flare Oct 2010 but It was still in the normal range and functioning normally. She said I was anaemic and put me on high dose iron tablets. I was taking this but upset my stomach and because my iron levels were then normal was taken off them in March this year. I have been suffering breathlessness again for the past 3 weeks and experienced three times palpatations. Good enough I had an appointment with my haematologist yesterday and mentioned this to her. She took full bloods including lft b12 foliate iron levels calcium levels. She said unfortunately we can only monitor lupus as there Is no cure. Tell me something I don't kknow . do you notice the more fatigued you are the more breathless you become? because I was bad this time last year I am wondering if the breathlessness is caused by the changes in the weather and there's little bugs going around which my body is trying to fight. I always have an emergency packet of anti biotic so if this turns Into an Infection at least Infection can start them
Sorry to read about your lung function test. Good thing your going to be closely monitored. Lung scarring due to inflammation can be caused by several of the connective tissue diseases , lupus or Scleroderma so shows you have the right label of CTD. I am the same and there is many a time I wish for a more specific diagnosis!. It does prove your Rheumy is keeping an open mind which has got to be good and your on the right treatment but I know how hard emotionally it can be sometimes. I also think the lady was wrong to tell you her findings. A doctor you know can put it into context better!. She has given you extra worry you don't need!. Hope I've helpedX
Why every time I see my drs they never do Vit b check, iron level check...never in all my life. I must have the worse doctors. Hence, why I am trying to do this naturally by myself. I won't mess with iron though. I will have to find food high in iron. Feel better
Don't underestimate a dx of 'only Connective disease'. It can do everything that lupus can, it simply means that you don't possess all the diagnostic criteria for SLE. I have textbook SLE symptoms except for skin but have UCTD due to lack of antibodies. My treatment also is the same. It's called 'undifferentiated' for a very good reason ie the course of disease can take any direction. My lungs have taken a pasting over the past 2 years having not been affected at all for the 15 before that.
Thank you for your comments about a diagnosis of UCTD. I've always underestimate d it as a label but you've made me think so differently, ie a harder illness to deal with.X
Thank you for your replies, guess the think is no one seems to have heared of UCTD, my Gp looked it up on the computer when I got my Dx. Is UCTD any better or worse than MCTD?
If I tell people I have UCTD and they look blank, I tell them it's like Lupus and then they still look blank most of them.! Education is need I think. I went into my last Consultant appt, seeing them for the first time, thinking I hope they don't think I'm a hypocondriac ! Which I do feel like some times, there are so many thing going on
ive been breathless a lot for the last 3 years. I find summer the worst, if temp goes above 19 degrees C I know its going to be a bad day. I was told "its just lupus and/or fibro no tests were done x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
lung ribcage issues with lupus
Does anyone else have Shrinking Lung Syndrome as a complication of their SLE Lupus
Fighting this Lung disease
Lupus and the lungs
Functional medicine approach for lupus
