has anyone had an infusion of sodium thiosulphate for calcinosis, did it help and were there any side effects ? x

[redtommy07]

[lizzy]

I haven't heard od this before, I have calcinosis, I have deposits cropping up all over, I have deposits on my jawline and it is growing too, tip of my middle finger left hand also my thumb, I have it on the side of my forearm, deposits on my elbow, also have it at the top of my leg in the soft tissue, all on the left side of my body, I had some removed surgically from my right shoulder a few years back, but I have never heard of an infusion for it, I don't even know what that would entail,, but I am interested if anyone has any experience with it

[redtommy07]

Morning Lizzy, thanks for your reply, I have deposits in various places too!! I went to see my consultant in Leeds last week and he mentioned this treatment, my understanding was that it was to try to prevent more calcium forming but not get rid of existing lumps ?? it is given via infusion 3 times a week.

I have looked this up on line but couldn't find anything specific to scleroderma,but will investigate further!!

[Yorky]

Hello, I also attend Leeds, who did you see? I usually see Dr Del Galdo. I have extensive calcium deposits on the ligaments and tendons of my right knee and would be very interested to hear about anything that would help, even if it is just to stop it getting worse. Walking is just so very painful.

[AHM42]

Calcinosis is one of the most difficult aspects of scleroderma to treat (other than bowel problems). To date very little has helped in the way of medication. Surgical removal is one option but it does tend to grow back again. My hands have so much calcium in them that the fingers are bent into my palm. I have had surgery on several occasions in the past but all to no avail. However a few months ago I had a finger amputated because of there being so much calcium which kept ulcerating and the finger was in the way all the time. Delighted with the result and nobody seems to notice I only have 4 fingers on my right hand, except my granddaughter when we were counting something on our fingers!!

The RSA are funding a project at Salford Royal Hospital looking into calcinosis.

AHM