Calcinosis is more prevalent in the diffuse subset of scleroderma.
The intake of calcium in the diet does not have a direct correlation with calcinosis.
Added complications can occur if the area becomes infected, requiring antibiotic intervention. Which of course, brings along added gastro-intestinal challenges.
On a few occasions I have almost passed out with the pain when a lump finally becomes loose and can be removed, leaving a huge hole which eventually fills with blood. Deep breaths, help at this point!
I have pitting and scars around my knees, nose, elbows, toes and fingers from where calcium lumps have been.
Similar, to the lumps of calcium, the softer lumps can take years to work themselves to the surface of the skin for removal.
This process being hindered by tight skin and a compromised immune and circulatory system, due to the nature of the scleroderma disease process.
Some patients report a marginal improvement when taking the antibiotic Minocycline, personally, I saw no improvement.
I have also spoken with patients who had undergone surgery for calcium removal, with the calcium only returning in time. I am not brave enough for this option being a reality for me!
I have also noticed that Raynaud’s episodes / blue fingers and toes can help the calcium forming.
With their most recent publication being published in the Scandinavian Journal of Rheumatology at the start of the year, concluding that:
This observation provides insight into the pathogenesis of SSc-related calcinosis, which may relate more to repetitive trauma than to ischaemia.’
I am very much hoping that the Factor XIII trial being carried out by the clinical trials team at the Royal Free Hospital will reveal the calcinosis antidote.
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
2016 Rare Disease Day Patient Voice