Hi, am new here but just wanted to know if anyone has experienced large areas of calcinosis?

[Eden1234]

Hi. Was diagnosed with systemic sclerosis 11 years ago. Within last 2 years, I have experienced areas of calcinosis under the arms and just wondered if anyone else has had this and if so, what treatment was given? lumps feel very firm with one measuring about 9.5cm x 7.5cm, so quite big! Had CT scan to confirm calcinosis lumps were indeed that. Also lots of calcinosis round shoulder joint and neck with ligament tear in shoulder alongside. Looking forward to hearing from anyone who has been, or is in a similar situation. Thanks in advance 😊

[MissusTee]

Hi,I do get it, but nowhere near as bad as yours. I don’t eat dairy and I think that this has really helped. I had a big abscess on my hand a year ago and that was from calcinosis that eventually fell out and it was a really hard yellow lump. Yours sounds a lot worse I hope that it feels better soon.

[Eden1234 in reply to MissusTee]

Hi, thanks for your reply. . Sorry to hear all the trouble you have had which doesn’t sound nice at all! I will certainly give the no dairy diet ago although anticipating that’s going to be quite hard for me to do but if it helps reduce these lumps it will be worth it! Cheers

[GGhere]

Hello Eden1234, yes I get calcinosis but not as large as yours. I have some on my shins that sit like peas under the skin. I get tiny dots of it on my arms and and back. I have very painful shoulder joins and hip and wonder if calcinosis is the cause. What a strange and tiresome disease we're lumbered with. My latest painful area is my thumbs - sounds silly doesn't it - it's painful to pull trousers on or to grip things. Best wishes to you.

[Eden1234 in reply to GGhere]

Hi Betsie, thank you. Sorry to hear all about your problems with calcinosis and yes a very tiresome disease ! Just wondered if you could ask to be scanned to confirm calcinosis in shoulders and hip? I have just recently been started on the antibiotic Minocycline to help treat my calcinosis. Really hoping for some improvement 🤞soon. I am interested about your thumbs..... is it the tip of your thumbs? I am having a lot of pain in both tips of mine. On one, the skin on the pad bit is quite hard and like you having difficulty and pain with any kind of grip. The other is similar but not so extensive. This has been going on for many months and really hope for some improvement.

[GGhere in reply to Eden1234]

No it's the big thumb bone from just above the wrist and upward - both hands. I can't squeeze my thumb and forefinger together to open things like sauce bottle, pull my knickers up (lol) and blow my nose. I've had to give up knitting and stuff like that and sometimes I can't grip a pen properly so my writing is rubbish. I find the aches and pains vary from day to day. It's great that everyone here understands - it sounds like nothing when you moan to family about the pain in your finger.

[Eden1234 in reply to GGhere]

Hi Betsie, we are both struggling with the same issues but I have no pain in that joints but lots, on pads of thumb and forefingers. You are so right... you feel a right moan if you tell anyone about a sore finger or two but it’s happening to you and it really impacts your life.

[160376]

Hi i have lots of calcinosis on my knuckles toes knees and the ones on my finger joints get very big and stretch the skin so tight it’s painful

[Eden1234 in reply to 160376]

Really sorry to hear all the problems you are having with calcinosis. I also have lots of calcinosis all over but for me my hands feel the worst and in particular at moment a joint in my pinkie finger which is agony to touch. Steroids have temporarily been increased to try and reduce the inflammation. I don’t know if you or anyone else feel you just never know what you are going to wake up to as far as scleroderma is concerned! I can go to bed with no pain then wake up to a new pain in the body that is so intense, lasts a couple of days or so then leaves as fast as it arrived!

[160376]

What do people use as a pain killer? Some times my feet hurt so much underneath I cannot walk

[GGhere in reply to 160376]

Hello 160376, I get the painful foot thing too. I read in an SRUK leaflet that with scleroderma the fat pads on the bottom of your feet diminish and become less fleshy. Some people liken it to walking on pebbles. I think this has happened to my feet and it may be the cause of your foot pain. The skin on my feet has become very tight and very often feels like it will split if I wriggle my toes or move my feet - it's horrible. The discomfort is worse in bed when I have no tights or socks on. I find during the day wearing compression hose makes them more comfortable. It may be my imagination but I feel like they hold my skin together (sounds silly doesn't it) but when I take them off at night my skin becomes very uncomfortable. You also need shoes with soft comfortable insoles - it helps.

[NYLH]

I have calcium deposits in my fingers. I have had six operations to remove them, but they keep returning, and surgeon has decided not to operate any more. Fingers are very painful and having difficulty with zips, buttons, plugs, touching anything.

My thumbs especially are huge with the build up of calcium. Just want something to help dissolve this calcium and give me pain-free fingers. The only relief I get is when I take a fine needle to the affected area and burst the skin and release the calcium which comes out like toothpaste, or a hard lump.