Calcinosis

[Helenlouise40]

Hi all

Hope you are all keeping well. I have pretty bad Calcinosis in my left knee, had it for a number of years. It is incredibly painful but I cope with it. It has become infected a few times and I have had to have antibiotics. My rheumatologist does not feel it is bad enough to be operated on (not sure what the criteria is for this). Any tips on how you all manage with this? It is really effecting my life, sometimes any material on it it too painful , if I knock it on something the pain almost makes me sick.

Thanks for any help xx

[LucyJean]

Hi Helen, I am not sure I am actually going to offer you much helpful advice, but I can certainly empathise. I have loads of calcinosis...it seems to be everywhere!!! Hands, toes, and left elbow is full, with it tracking down my left forearm. I have had some removed by surgery from my hand, but it was a real nuisance because it took forever to heal and it has all come back just as before! I know another lady who has had lots of surgery to remove it from her jaw, her feet and hands. It is always done as a last resort because of the impact it has. There isn't any specific criteria for surgery, you just need to convince whoever you see that it is impeding your life and daily function so badly that it needs to come out. Your Rheumatologist would need to refer you to a Plastic Surgeon, who is the most likely person to do it, or sometimes an Orthopaedic surgeon. If they won't do it you might be able to persuade your GP to refer you.Otherwise, what is the answer....well really I have not found anything particularly helpful....some areas can be padded easier than others. Fingers can padded with little gel finger stalls but a knee?! Well you might find some of the soft straps and supports you can buy would help, but you often find that it just compresses the area and makes it worse rather than better. I have several layers of clothing over my left elbow/arm and that cushions it a bit, but they are loose enough not to compress it.

At some point, some clever person is going to discover what weird mechanism causes this, and then hopefully there may be something to manage it better but at present there is not anything out there.

All my best

Lucy xxx

[KatieAnna in reply to LucyJean]

Hi I'm so sorry to hear about how much you have to suffer with this disease. I haven't any suggestions for how to manage it but my thoughts and prayers are with you both xx

[wiggywoo]

Yes it’s a pain literally!! I have lots in my right knee which gets infected and is so painful Also have it in 5 fingers and both thumbs which get infected and cause digital ulcers. I have Iloprost infusions which improve the RAYNAUDS and circulation but sadly does nothing to destroy the calcinosis. I have very little feeling in my fingers other than pain. Not a lot can be done but I am sending big hugs to you in sympathy!!