Hi, first of all I really empathise with everyone who is suffering with raynauds and scleroderma , it is such as a difficult disease to

[Monika]

treat. I was diagnosed in 1997 after suffering years of raynauds and undergoing numerous bowel operations. Apart from the bowel and difficulty with swallowing my main symptom is acute calcinosis. I began having lots of calcinosis on my right hand which was operated on ten years ago. However they came back within six months. I now have huge deposits on both elbows. Any suggestions, alternatively or medically for dealing with this. Thank you.

[Yorky]

Hello, I am disappointed that you haven't had any replies. I have calcified ligaments/tendons in my knee, which can make walking extremely painful and I was hoping that someone may have been able to help with advice. The only treatment I had was a cortisone inj into the knee which had no effect at all. I think that calcinosis needs to be given much more research. The fact that you had the calcinosis removed, but it came straight back is not encouraging. Best of luck in trying to deal with it, I know it is difficult and very tiring.

[Monika]

Hi Yorky, thank you so much for your reply. I sorry to hear about your knee and let's hope that, eventually they find why the body is creating the calcinosis. There doesn't seem to be any medication that will stop it happening. I have tried numerous alternative remedies but as yet not found anything to help.xxx

[AHM42]

Calcinosis is one of the most difficult things to treat in scleroderma. I have had it for 35 years and get recurrent ulcers as a result of the calcium protruding through the skin mainly on my fingers but also on my toes. When infected, the ulcers need anti biotic treatment. There is no medication at this time to prevent calcinoisis and although much research is being carried out (at Salford Royal Hospital), there is still a long way to go. Just hang in there!

AHM

[Monika in reply to AHM42]

Thank you so much for replying and, hopefully, the research will come up with something In the not to distant future. X

[overnighthearingloss]

I take Bosentan which appears to have helped with the ulcer situation. They have been more under control since taking it. But winter is definitely a more challenging time.

As with so many drugs they often replace one effect with another. It makes me cough terribly and I believe causes some of my acid reflux issues.

[Monika]

Thank you for the info. I am waiting to see a new rheumotogist, although I am under the wonderful Royal Free, I feel I need so somebody locally I can talk to. I will discuss Bosentan with him. Let's hope this winter isn't too severe! Xx