I had my 6 month appointment with my scleroderma specialist and have some information to update on my calcinosis on the buttocks issue. The calcinosis are in the soft tissue of my lower buttocks and down my inner thighs. The biggest mass is on the right side, measures the size of a large orange, the left side is the size of a small orange but that is the side where they are on the surface and hurt the most. Imagine bags the size of the oranges filled with rocks and pebbles of all different sizes and shapes, some smooth and some pointed, then put them where you sit and that is my nemesis right now. The discouraging thing is that they do not know why calcinosis forms or what helps to get rid of it, nothing seems to work.
I am in a study, A Prospective, Observational Study of Calcinosis in a single-center population with scleroderma-spectrum disorders. This is purely observational and is to help understand who may be at risk for calcinosis, why it occurs in some and not in others. My doctor measures the calcinosis and takes notes but that is all. Since I had a small amount of leakage from one on the surface I am now in another study, Crystal analysis of draining material from scleroderma-related calcinosis site. The expectation is to permit better understanding of the composition of the calcinosis, what pathways may be abnormal in allowing these to form in the soft tissues, and why some are more destructive than others. The goal is to find better treatment for scleroderma calcinosis. I have some small vials to capture any leakage, even if it is the smallest drop on the tip of a cotton swab, and packaging to mail it in.
My doctor suggested using heat to make it feel better so I am sitting on a heating pad right now. She also suggested a product like Ben-Gay and just the thought of that makes me want to cry. I wake up in the morning in pain, have trouble sitting places, and it even hurts when I walk now. I bought a cushion to sit on but that puts the pressure right on them so that is no good. I am considering exploring more surgical options at different locations in the future to see if there is a less invasive way of giving me some relief.
It is thought that for some reason the body is drawing calcium out of the bones and depositing it in the soft tissues. I am scheduled for a bone density test later this week. My doctor has been wanting to put me on medication for osteopenia for a while now but things like the kidney transplant and my esophagus have put it off. She said there are many doctors studying the calcinosis process right now so hopefully answers will be coming soon to help.
I'll keep you posted.