Calcinosis : I have SS, myositis and... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Calcinosis

johncot
johncot

I have SS, myositis and calcinosis. I'm told there is no treatment for calcinosis. Does anyone else have calcinosis? And if so what treatment have you tried?

11 Replies
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I have calcinosis on both hands, arms and elbows. Eruptions on my hands and fingers mainly resemble warts and I rub them gently with an emery board to prevent then catching on clothes etc. One finger became extremely painful, the calcium had traveled down both sides and was erupting under the nail. A consultant removed it all under local anesthetic. He said it was like pulling out chewing gum! It will grow again, but not for a very long time. I have a lot of lumps down my arms and round my elbows, but they do not bother me unless I forget and press down on them. There isn't any cure except physical removal, but this is not offered unless absolutely necessary.

Thank you very much for your reply. When I was first diagnosed about 2 years ago it was very painful and I am still on prescription pain killers. So far I have only had a couple of skin eruptions around the elbows. Thanks again for sharing your experiences.

I have SS and Reynauds. I had a hard sore lump on the tip of my finger which became white which I thought might be Calcinosis. At first I tried Magnesium sulphate paste to try to draw it out but it just exposed the white more. I searched for help on here and someone suggested soaking my finger in very hot water with sodium bicarbonate in it. The calcium softened and eventually came out as a chalky liquid. It has started to come back since but I just repeat it to stop it building up. I sent a photo of it to my GP during lockdown but she told me to ask my Rheumatologist for a diagnosis and still waiting for an appointment.

johncot
johncot in reply to AJOC4

Thank you for your reply and sharing your experience particularly with the sodium bicarb. It's encouraging to hear of others experiences and how you manage the condition. Best wishes.

Hi there, calcinosis is pretty common with scleroderma, especially the limited version. It is the first letter of the CREST acronym. It tends to occur on pressure points so it is most common in the hands and elbows. It will appear as hard chalky lumps, toothpaste and a chalky liquid. It often builds up, erupts out of the skin and then settles, before building again. Sometimes it goes through phases where there seems to be loads produced, then it goes through quiet periods where it is pretty stable. There is no treatment for it. There is no drug or treatment that cures it. It can be surgically removed if it becomes a problem, but it will return so surgery should not be performed routinely or without a lot of thought.

Keep an eye on the areas, try to reduce pressure if possible (use soft grip handles, wrap cloths/or some form of padding around things to pad them if you are gripping things). Don't mess with it. By that I mean don't be poking it with a needle or whatever sharp you happen to have at hand. If there are areas where the calcium is coming out keep them clean and try soaking with hot water to bring to the surface. I would use a salt water bath to ensure it is clean.

There is a presentation on calcinosis on the FESCA conference

fesca-scleroderma.eu/patien...

All my best

Lucy xxx

johncot
johncot in reply to LucyJean

Dear LucyJean. Thank you for taking the time to respond and to offer advice for which I'm very grateful. I am 67 years old and was diagnosed with SS, Raynaud's, Myositis and Calcinosis about 2 years ago. The Calcinosis was concentrated around my trunk area, the Consultant described it as being "in sheets". It was extremely painful. I've been taking Mycophenolate, Steroids and pain-killers. What confuses me is I've also been prescribed Adcal, a calcium supplement, because I also have osteoporosis. I asked my Consultant if it was wise to take a calcium supplement with Calcinosis. I was assured that the two were not linked in any way. The calcium deposit around my trunk area has subsided but I still have lumps on the buttocks and also down the side of each leg and both elbows. The pain comes and goes and I've managed to reduce the number of pain-killers I take. I've only recently discovered this web-site. I wish I'd found it 2 years ago as I find all the responses helpful and comforting. With very best wishes, John

Hi,

I have systemic sclerosis and used to suffer badly with the vial problem.

Fingers, arms, elbows. You name it. I feel for you.

I am lucky. I haven’t had an outbreak for three years now. I was admitted to hospital with breathing problems and ended up on a high dose of steroids.

I still take steroids but only at a support level of 10mg daily. Also, I have cut dairy out of my diet pretty much completely. I’m not ridiculously strict about it, I’ll have a pizza if there is one going. No milk, little butter, no cheese.

It may very well be coincidence but i really don’t think so.

Maybe give it a try. You never know. I hope that it helps you. I really do. I know how miserable it can make one.

Take care of yourself, stay safe, all the best.

Mark.

P.s.

I was told that rubbing cider vinegar on the sights helps. I didn’t need to try it in the end. Again it may help and a bottle of vinegar won’t break the bank.

If it doesn’t work. You can always put it on your chips. 😂😂

johncot
johncot in reply to MFC911

Thank you very much for your response and sharing your experiences. I had also heard that cutting out dairy products was helpful. I'm also now down to 10mg per day of steroids. Thanks also for the advice on cider vinegar, as a chip lover that's something I can try. Best wishes John

Hi, I have calcinosis on my fingers, elbows and toes. I had my fingers operated on about 15 years ago but the calcinosis came back very quickly. My elbows and arms are very bad and painful and I have seen the plastic surgeon at the Royal Free. He was due to review whether he could operate on them but then we had the pandemic and my appointment has been put back to January. However I’m not sure that I shouldn’t just leave well alone because I’ve heard, not only will in come back, but also that people who have had it done say it leaves them with more pain and elbows that don’t work properly . When they are really bad I put manuka honey on them with a bandage and that seems to help. Also I soak my hands in a wax bath. I have been taking CBD oil at night and in the morning and this seems to take the edge of the pain. I also drink a tablespoon of apple cider vinegar in warm water in the morning. I hope you find something that helps you and wishing you well. With very best wishes x

johncot
johncot in reply to Monika

Dear Monika thankyou for reply and sharing your experiences.I had heard from others that cider vinegar was beneficial. I too have been taking CBD oil which I found helpful. I suppose we all have to try and find the treatment which gives us the greatest benefit and I will try the the treatments you have suggested. Best wishes

amc282
amc282 in reply to Monika

Do you mind sharing which CBD oil you find helpful? I have it in my elbows as well and I seem to be in a period of flare up.

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