Calcinosis

[Lyndabickley]

Hi all

I am struggling with calcinosis, particularly in my index fingers. I have one area in which hard calcium breaks through and gets infected. Eventually a chunk comes out leading a hole. Often there is localised infection and suppuration and I have taken antibiotics, but whilst it is extruding my finger is excruciatingly painful and I cannot bear anything touching it, which makes life difficult! In my other index finger lumps of calcium are sitting under the skin but have not broken through. Has anyone any advice about managing this. I would even be prepared to have my finger to the first knuckle amputated as it’s useless but I suspect it would not heal and if it did calcium would just come through the stump!

[Eden1234]

Hi, so sorry to hear all the problems you are having with calcinosis. Very troublesome and horrible managing day to day simply tasks! I was very recently put on to minocycline to help reduce calcinosis and wondered if this had been offered to you? I started on it back in November because of larger areas under arms etc., to which it did start to reduce the areas quite soon so was quite excited , however the skin on my fingers especially became very sensitive (sensitive anyway) and even trying to bend them slightly, felt like they were burning and then the worst ulcer to date appeared bang in middle of pad of middle finger and first pinkie joint became very swollen and excruciating to touch. Thought I was just having a very bad Scleroderma flare up but eventually connected symptoms to the minocycline. Have stopped this medication meantime and everything has settled back to my normal although still left with large ulcer on finger. Consultant is keen to restart the minocycline again at lower dose once I feel ready again to try but am quite anxious knowing what might happen again. Just seems as though I had a bad kind of reaction to it but it was doing it’s job. Don’t want to put you off of the drug as consultant said people can see good results with it. As ever with Scleroderma it’s trial and error of drugs. Keep me posted with how you’re doing. Best wishes x

[Lyndabickley in reply to Eden1234]

Thanks for your response. It is awful, must have been dreadful under the arms. I did have a course of minocycline which I took for several months but although I didn’t have side effects it did not stop the problem. As calcium dissolves in vinegar I did try once soaking my finger in it. It was not infected at the time and it did soften the calcium which helped it to come out but of course it just keeps returning! I wouldn’t try this while I have an infection as I guess it would be very painful. I did read once in the SRUK magazine that a topical treatment was being tried but my consultant didn’t know about it. Hope they will find something eventually. The literature suggests surgical debridement but I think it would be very sore for a while and would then return anyway. Once a chunk comes out I get a bit of relief so I just wait till that happens. Hope your ulcer heals soon. We do have to learn to live with this weird disease!

[cowhide in reply to Lyndabickley]

My sympathies, I also get calcinosis in my index figure although I suspect not as bad as yours. It is 'verging' on infection a lot of the time (I have taken antibiotics 3 times in the last 4 years for it when it got worse).

I find that using germolene at night and sometimes in the day - but difficult as I use my hands a lot at work - helps to alleviate the pain and reduce infection. I also sometimes soak it in hot salt water when I think it is getting infected. Anything to reduce the need for antibiotics.

Regarding the actual calcinosis, other than trying to keep skin soft and moisturised to help it ease out when it is ready, I have no remedies - I wish I had!

[Lyndabickley in reply to cowhide]

Thanks for the tips. I tried an experiment this night before last. I soaked my fingers in warm salt water then applied magnesium sulphate paste which is for drawing the pus out of wounds and put on a dry dressing. I left it for 72 hours and soaked my fingers again this morning and the calcium (and pus) came out leaving a hole into which I put Fucidin cream and have redressed it. It is much less painful now. I have great difficulty dressing my fingers as I have severe contracture of both hands. Trying to manoeuvre a dressing onto a bent finger with other bent fingers and stopping the sticky bits from sticking in the wrong place or onto itself is a work of art and science! I do moisturise but that’s also a painful exercise as my fingers are usually sore. I’ll try the antibacterial cream at night. I had the magnesium sulphate paste and Fucidin prescribed as I get other ulcers on my knuckles and need to lance and dress them often ( the GP or practice nurses give me sterile needles and I have a variety of dressings). My rheumatologist says I should seek medical attention when I get infected ulcers but I’d be there all the time! Not good even in non COVID times. Trying to manage my body with all the horrible things this condition does is a full time job.

[cowhide in reply to Lyndabickley]

It's awful trying to do fiddly things with un-cooperative hands isn't it. The reason I recommend germolene is that it is anti-bacterial but also has local anaesthetic properties, whereas most creams are one or the other, I apply it without a dressing.

I also find that inadine is good at drawing out gunk, if you can tolerate iodine, but it needs to go under a dressing. The nurses at my local GP practice will usually give me some when I have been in for an infected finger, otherwise as you say, you practically set up camp there! Then I go and see them about every 10 days until it has cleared up, with me renewing the dressing in between.

[Sanmateogirl107]

if your in pain i have tried wild lettuce extract from ebay it kills pain really well. i would see your doctor about the calcium have him take it out. take vit-c, black elderberry, zinc to keep your immunity up. stay warm during cold weather. ask about prazosin 1mg also for raynaud's syndrome good luck hugs for a better day. love julie

[Lyndabickley in reply to Sanmateogirl107]

Thanks I’ll look into this

[AJOC4]

My fingers are so painful. The worst calcinosis is on the left hand where I have bad sclerodactyli and numbness. I accidentally cut my thumb chopping veg and there was calcinosis underneath and has left a hole that is not healing. One tip I found on here that did work for my index finger was slightly cooled boiled water with bicarbonate of soda. It worked a treat and came out as a chalky liquid.

[Lyndabickley in reply to AJOC4]

Thanks for this. I will try this . It’s so difficult managing things with sclerodactyli. I get numbness too but it doesn’t stop the pain when ulcers develop.

[AJOC4]

Yes, the numbness is I can’t feel my fingertips but the pain when I slightly knock them is so horribly painful. I’ve got Reynaulds too. Do try the hot water with bicarbonate of soda.

[AJOC4]

Ps I had used Magnesium sulphate before soaking in hot water and bicarbonate soda

[Lyndabickley in reply to AJOC4]

Yes. Same experience. I’ll try next time I have a big chunk to get out. Take care

[Morganalefaye]

I’m waiting for a diagnosis on this. I have a small sore on the side of my leg, just above my ankle. It grows, then a lump falls off and it starts again. Doctor gave me steroid cram for it and the pain it caused was extremely bad. It’s very small and seems too painful for something so tiny. Is this likely to be ‘calcinosis’? I’ve never heard of it. I have Crohn’s, reactive arthritis, osteo-arthritis, flares of iritis, and a lot of trouble with my nails.