calcinosis

[newton]

I have an area over my knee cap that has been troubling me for 5 months. Underneath the skin it feels like a hard layer approx. size of a 2 pence piece. Clear/slightly yellow discharge is coming out through broken skin. After a few days a thick white discharge emerges upwards, its strange to touch and if stroked and out of the wound at times a hard white material (calcium?) comes away. I have been waiting for 5 weeks for xray results to see where this will take me. Has anyone experienced this and if so what is the out come, surgery? many thanks

Newton

[MissusTee]

Hi,

That does sound like calcinosis. I have some on my hand and thumb. It sounds too long for results for an x ray, so maybe chase it up. You need to be careful that it doesn't get infected. You should also be seeing a rheumatologist that deals with scleroderma.

[newton in reply to MissusTee]

Thank you for your reply, I have made an appointment to see a doctor mid week as I feel it has gone on long enough and want to find out what it is and how best to treat it. I do see a rheumatologist but my annual appointments are more like every 18 months. When my knee started to play up early Nov I saw a doctor once and was passed onto the nurse for dressings then left to myself to do it, I felt they weren't sure what it was. I then chased up my over due appointment with the rheumatologist and showed her, early Jan. She asked me to arrange the x ray.Tried to follow that up last week but she is away for a few weeks hence going back to the doc. I find Health Unlocked a good site to use to ask for advice, I can then try to sort out myself if pos. Again thank you for your help.

[LucyJean]

Hi there, I think it sounds like calcinosis too. I have loads in my hands and my left elbow has a big mass in it. My advice is leave it alone unless it is significantly impacting on your function. It will probably come back if they remove it so it isn't worth the trauma of surgery. Keep it covered if it is an open wound but otherwise it usually takes care of itself. Calcinosis is a bl**dy nuisance I have bits erupting from all over my hands and it can make life very tricky. Your Xrays will show it as a big 'cloud' of dense white mass. Xrays are instantaneous, the only delay would be getting someone to report on them, so you might want to harass whoever is supposed to be doing so.

If you are going to opt for surgery you need someone who has a real understanding of what they are dealing with...very few do! Speak with your Rheumatologist about the situation. Unfortunately there are not any medications to deal with calcinosis, it is one of those learn to live with it things about scleroderma.

Hope that helps

All my best

Lucy xxx

[newton in reply to LucyJean]

Thank you for your advice. I think it is calcinosis from what I have read. Having it confirmed would be helpful which I have been trying to do then to find out the best way of moving forward with it. Will it eventually clear up by itself or does it spread over a larger area? I find that very few people have heard of Scleroderma or how to treat the various problems that come with it, doctors included. Have you tried surgery yourself and if so what did entail. Many thanks

[LucyJean in reply to newton]

Hi there, the answer to will it spread is 'possibly'. It is really impossible to say. Calcinosis tends to occur on pressure points, but it can randomly appear in many places. I have had bits coming out of my face and forehead with no recurrence. I remember seeing one lady who had calcinosis coming out of her eyes! I have loads in one thumb compared to the other, but I tend to put more pressure on the one that has least in it...I have loads in my left elbow but not in the right...and although it is steadily increasing it is not really causing any problems...it is all a little bit of a mystery.

I have had surgery to remove it from my right thumb. I had a massive lump sitting between my thumb and index finger in the web space and it was making using my hand tricky and painful so they removed it, along with loads from the back of my thumb. Much of it has come back but the big lump in the web space has not (yet)...thank goodness.

I am not keen to have any surgery unless it is essential.

All my best

Lucy x