Calcinosis

[Monika]

Hi, I know I have written on this blog about calcinosis in the past. However I have just been to see Mr. Goddard at the Royal Free about the really bad calcinosis in my elbows. He treated me for the hands 10 years ago and I found they came back very quickly. I told him that but he still suggests drilling out the elbows as he says it will eleviate the pain. I have to let the hospital know within three days whether I am going to go ahead with the procedure and I really can't seem to make a decision. Has anyone had their elbows drilled into and, if so, did it help and how quickly did it come back. I hope someone in our scleroderma family can help me make a decision. Xxxxxx

[Sarahbv]

I've not had my elbows done and found that swimming (sea water) eventually did the trick and it all came out, either in lumps or as liquid. They've built up again since and I haven't had a chance to do the same concentrated swimming to have the same effect but fully intend to. However, I did have the the calcium scraped out about 30 years ago from the base of of my forefinger and it came back very quickly. I would suggest not having the op because (a) the calcium will only come back and (b) the skin tissue gets weaker and weaker the more 'stress' is put on it. I hope that helps you to make a decision. Whatever you choose, good luck!

[Monika in reply to Sarahbv]

Hi Sarahbv, thank you so much for your reply. It was really helpful - I wonder if one soaked the elbows in salt water in would help the calcinosis dissolve! I think I agree with you that there is no point in having the procedure as I know they will only come back. Thank you again. Love Monica x

[Sarahbv in reply to Monika]

Tried that and it simply didn't work! It really needs swimming every day and I think it's as much the sun as the salt water that helps. (I was on holiday for two weeks) The calcinosis really is a bugger of a problem. It's the worst of my symptoms. Of course, if we could avoid all activities that put physical pressure on these areas....!

Sarah

[Monika]

Need to book a holiday somewhere hot and by the sea - maybe next year xxxx or perhaps one day someone will find a way of controlling the calcinosis. Yes it is definitely one of the worse symptoms of my scleroderma . Take care xxxxxx

[Peanutbutter6]

It's difficult buying clothes when you have calcium down your arms and on your knees especially in the summer. I always look for long sleeves and dresses that come under the knee, but when I'm aboard and in the sun and swimming in the sea I feel so much better in myself and not as self conscious . I too have seen Mr Goddard, but I don't fancy being drilled if it all comes back

[Peanutbutter6]

All Calcinosis suffers should be allowed 2 weeks in the sun .... On the NHS perhaps ? We can dream

[Monika]

I agree - I also choose clothes to cover my calcinosis on my arms. Unfortunately, I can't always wear gloves so people often ask 'what is wrong with my hands'! Definitely decided to leave the drilling at the moment and have cancelled the procedure. The year before last I went to visit my son in Malyasia and the calcinosis was a lot better - I was seeing a Chinese doctor and that, combined with the heat, definitely helped. Wouldn't it be nice if The NHS sent us calcinosis sufferers of together to the sea for a while. Many years ago I visited the Dead Sea in Israel and met a lot of people with skin complaints who came from Germany. They said it was funded by the state!! Take care and let's hope that they soon find something that will breakdown the calcinosis. Xxxxx