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DLCO test

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Hi!

 

I'm new to this forum. I have had Limited Scleroderma for many years, but fortunately it has been slow to progress. It started with Raynaud's and a gangrenous ulcer, then other symptoms developed and I also have anti mitochondrial antibody with the anti centromere. I have developed GERD quite badly which is managed. However this year I have noticed a decline - I have developed calcinosis, my energy levels are low and my fitness levels are deteriorating. I had a lot of tests -my bloods showed a lot of inflammation and my DLCO tests for lung function was 63%, although the CT scan was ok. I'm a bit anxious and I was wondering if anyone else knows much about the DLCO result (I know its for gaseous exchange and a bit low).

 

Thanks! Lisa

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Hello Lisa,

It is the middle of the afternoon where I live so I thought I would write my little bit while everybody else sleeps!!

 

Like you, I have had Sclero for many years. It started in 1966 (last century no less!!) and I have managed more or less normally until the last few years when, like you, I have noticed my fitness going sharply downhill. I don't know a great deal about the DLCO results but mine are like yours, around 60 - 65% with a normal CT and no alarm shown by my general practitioner. From what I understand it seems to me that the 'expected' level of result is actually quite high and a result in the 60 - 70% range is not too serious.

 

Of course, not being medically trained, and not even having a current first aid certificate means I might not know what I am talking about!!

 

I am sure, that when they wake up, others with more expertise and knowledge will respond and I will be interested to read what they think too.

 

In the meantime, best wishes and warm hugs, from the upside down side of the world.

 

Judy T

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Hi Lisa,

 

A warm welcome to these friendly and informative forums!

 

Congratulations for dealing with Scleroderma for many years; I'm a comparitive newcomer having only been diagnosed for just over two years. I'm sorry to hear that you've noticed more symptoms lately. Are you being dealt with by a Scleroderma specialist? This is very important as many rheumatologists don't have the expertise to deal with this complex disease.

 

The DLCO (Diffusing capacity of the lung for carbon monoxide), is the extent to which oxygen passes from the air sacs of the lungs into the blood. As an example I have lung fibrosis and at it's worst my DLCO was 48%; thankfully after 6 months treatment with IV Cyclophosphamide it's now increased to 82%, although it was a little lower on the last lung function test I had. My consultant advised me that they tend to expect a fluctuation of up to 10% between each test so they're not worried if it has declined a little. I've included a link to Lung Involvement which I hope you'll find informative and helpful.

 

I've also put in links for Raynaud's and Gastrointestinal Involvement to give you a little more light reading ;) and hope you'll find them interesting. :)

 

I'm very pleased that you've joined our community and am looking forward to reading more of your posts. Here's a :emoticons-group-hug: to welcome you to the forums! (I'm the red one!)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Lisa

 

Welcome to the forums. It's my understanding that scleroderma can wax an wane, although I am still waiting for the waning bit myself, so I guess it's not unusual to be well for a long time and then to feel not so well...

 

I can't help further with the lung function question other than to direct you to information on site about lung involvement.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lisa,

I have had diffuse scleroderma with lung involvement for 7 years. My DCLO has dropped as low as 38% and is now 45%. I have been on and off oxygen therapy a couple of times and right now I am off. I find I get out of breath and need to take things slowly but am managing.

 

Your lack of energy and fitness level are probably related to this, in part. I've gone from a runner to a slow walker but hey, I'm walking! My friends know to slow down for me or that eventually I'll catch up.

 

I'm sure you already know this, but keep copies of all your tests so you can look at the numbers for comparison in the future.

 

miocean


ISN Artist

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Thank you for all your replies!

 

I'm probably getting a bit over anxious, but it is hard to find others who have this condition, and I feel like I'm developing into a bit of a hypochondriac!

 

Lisa

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