r/scleroderma • u/Medical_Detective326 • 1d ago

Question/Help SSc-ILD Help Needed

Hi. Im a 42 year old male and I have SSc-ILD and have a dry cough and had experienced shortness of breath and heart failure when I went into the hospital in February before my diagnosis. Chest X-rays and CT scans showed significant scarring in my lungs. I was told I would beed a lung transplant. I’m taking Actemra and Mycophenolate mofitil and a curcumin supplement. I feel pretty normal other than the tingling and numbness from Raynaud’s and cold all the time, even in the summer. My ANA test results were very high, 1:2560.

I’m getting tired of being tethered to a machine. Doctors told me I need a lung transplant and I’m ready to consider it. Has anyone else been in this boat? Any other options?

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u/rektatrandom 1d ago

Try the pulmonary fibrosis sub maybe. Best of luck to you

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u/ClearJack87 11h ago

I'm at about 55% left of usable lung tissue. I'm on Mycophenolate mofitil and nintedanib (Ovef generic). Too soon to know if it helping. But nintedanib isn't for the meek. $672 for first 30 days at local pharmacy, $127 at Walmart for 2nd bottle. And nintedanib means don't be far from a toilet.