Intestinal Lung Disease

[Athena2023]

Has anyone had scarring of the lungs due to Scleroderma?

[Rups123456]

Hi Athena I have it. At the moment all I know is that it has progressed but they have recently upped my myclophenate to the highest dose to see if it slows down the progression. I will begin more frequent lung function tests. Rather than reoccurring CT scans. My main indication that it may have got worse was the continuous hacking cough. Which I’ve noticed mainly comes when I’m eating or more so when I have any kind of gluten.

[Rups123456 in reply to Rups123456]

my daughter does a lot of research and has asked me to ask my specialist to explore these medicines

which is the most common form of PF. These include nintedanib (and pirfenidone esbiret).

And also think about these supplements

vitamin C, vitamin D, magnesium, omega-3s, zinc, and selenium

I always feel like unless it’s really bad they not interested. I am trying to stop it from getting to that stage.

I try and do holistic stuff like breathing exercises everyday in conjunction with the pharmaceuticals and supplements. It gets overwhelming but I am trying what I can consistently to see if there are any changes.

[trunchalobesity]

yes I’ve had ILD for 21 years.

I’ve had various treatments but the game changer was mycophenolate which allowed some improvement.

I’m now on Nintendanib as well as there has been additional trickling decline and we would like to plateau.

Since I was diagnosed when prognosis was very poor, I am pleased to say that medicine has advanced significantly and I remain positive x

Best wishes

[Athena2023]

Thank you . This is very reassuring. All the best x

[Worried_partner]

Hello

My partner has some scarring and we know that following a recent test there was some further decrease in something that’s measured. I have definitely noticed his cough has been worse in recent months. Previously it was fairly strong first thing in the morning. He used to joke it was his pipes clearing. Recently the cough has continued (though not so strong) throughout the day. I’ve found that quite worrying.

Coincidentally we have just come back from being away in Mexico for 2 weeks. His cough absolutely disappeared. It was really noticeable. We were wondering if this country being damp is triggering him or whether it was the decrease in anxiety from being away. Does this ring a bell for anyone?

Thank you

WP

[Sashmo_L]

My sister and nephew both have asthma and they barely cough when in the mountains abroad or in a warm dry climate. But they suffer more in England, so our damp climate must impact them.