A good friend of my sister has had CREST for 30 years, I spoke with her and it has been a tuff journey, in the early days there wasnt really any specified medications, MYCOPHENALATE wasnt in use then, so she was on MTX for many years.
She then found a doctor with a different approach, who put her on Low Dose Naltrexane, i looked into LDN last year when my liver tests had doubled. 20 years later she has returned to LDN as her stable medication with good results. Her lung involvement IMHO could have been prevented/slow downed of she had been on m MYCO at the start. So ATM lung issues and GI/reflux are her main symptoms. She said fatigue was greatly improved with LDN. LDN daily dose starts at 1mg and progresses to 4.5 mg max.
Why did this emergency happen and how to prevent again?
Has anyone been prescribed Mycophenolate for stiff and painful hands rather than for ILD?
Seeking info for Mum suffering with Raynaud's and Scleroderma
Newly Diagnosed
Hi, has anyone been diagnosed with Scleroderma since childhood?
