Calcinosis - any effective treatment?

I just joined this site, but have been living with scleroderma for 12 years. I have so may spots of calcinosis in my hand/fingers that it is causing severe pain. I know everyone here is fighting something, but if anyone has any advice regarding treatment for calcinosis I would appreciate it. So far, I have gotten the 'there is nothing' that works very well response from physicians.

Also, is everyone taking immunosuppresants? I never have, but am starting to wonder if I should be.

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I have had calcinosis on my right index and middle fingertips since February. They worsened with intense keyboarding during an intense writing deadline. I have been massaging in olive oil and applying pure aloe vera. The sore on the index finger developed a scab, which has fallen off. They are no longer sore, but are not gone permanently. I'll be curious if anyone knows about a "cure."

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I have been taking Cellcept for about 6 months. My Raynauds, lungs, and skin have improved. I would highly recommend talking to your dr. about it.

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I have calcinoses everywhere legs, feet, knees, shoulders, arms, hands and fingers mostly.
When they start getting inflamed and starting to hurt I put on Bactraban prescription antibiotic ointment. I put it everywhere even when not inflamed I use it. I have been using the generic of it for years now and it really works with the pain and problems.

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I feel stupid asking this question, but I have to...Does calcinosis have sometning to do with the intake of "Calcium"? I stopped taking my multivitamins when I realized that I have few calcinosis on my elbowes. Thanks.

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I would like to know about this problem as well. The tips of my elbows are so sore. I am currently rubbing Pure Unrefined African Shea Butter on them. It seems to relieve the soreness somewhat but I don't think it actually heals them. They are so sore,feel bumpy and flaky I can hardly touch them. Does anyone else have this problem and what are you doing?

Kat

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I also have numerous calconiosis spots and they showed up in hand x-ray. I have to keep them covered with bactroban or antibodic onit also or even emla(lidocaine cream) if they are not open. These works pretty good except for some many bandaids on my hands and elbows. They say it is NOT from calcium intake, but a conversion difficulty in our bodies.
Hope they soon find a cure.

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I also have calconiosis on my elbows, fingers, knees, feet, shoulders and back. My rheumatologist has told me that there is really nothing I can do for it, also. I have found that rubbing in Queen Helene' Cocoa Butter Hand and Body Lotion on my problem areas as well as the rest of my body, right after I get out of the shower daily, before drying off, seems to help a little, as long as I'm consistant with doing so. There are days when the calconiosis is worse on the hands, sometimes worse on the elbows - but there doesn't seem to be anything in particular that I'm doing to aggravate each occurance.

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Looks like we're all in the same boat girls!! Fingertips, (of my amputated nubs), elbows, shins, knees and ears are my spots!!! The Rhuemy says there's really nothing that can be done, unless it gets so big and soooo painful, and then can be surgically removed, but there's no guarantee that all of it will be removed. I cry every day cause of the pain....not long crying, just when I hit my fingers, and then I get pissed off!!!!!Oh well....."Our new normal, right?"
Jeri

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Yes- I have calcinosis on thumbtips- Sometimes hurt, esp. when in process of enlarging, usually just hurt like crazy if I bump or put pressure on them. One spot keeps extruding calcium, so I keep it bandaged- That also helps prevent worst of pain from bumps- It seems to me that they grow when I take calcium supplements, recede when I don't - even though it's supposed to be OK to take calcium- Learning to get along without much use of thumbs (also have osteoarthritis in left thumb)

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Hello all, I too have very bad calsinosis on my fingers and tips. I gotta type with my finger nails....don't know what I would do if they all broke...lol. Anyway, after complaining to several of dr's I finally asked the right one the other day. He prescribed me a cream called Cortoderm 1% Hydrocortusone Ointment. Off to the side it also says Tar. But it's not like tar as we know it. There's really no smell ang like a clear ointment.
Well, after picking it up yesterday, I immediately put some on a finger where the calcinosis spreads the entire way down one side. After few minutes my skin seemed to soften and little less pain. So, at bedtime, I pretty much covered almost both hands with this ointment and put white cotton gloves on. I wasn't wakeded in the middle of the night from the pain like I sometimes do. All areas seem to smoother this morning, swelling's a little down, still have pain but not as bad. I'm going to continue with this ointment and see what happens. My fingers are so bad from the way my calcinosis is in some areas where it just feels soooo tight and very rough like sandpaper. If I can get this under control and help with some of the pain I will be happy. I just have to remember to be persistant about it.
Has anyone else tried this ointment before??? If so, what was your outcome?

Linda

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I have extremely sore spots on my elbows too, hadn't thought it was related to scleroderma. I am seeing my GP this week in regard to Bursitis in my right hip. I will also ask her about my elbows now that you have mentioned that it could be connected. Gee I would be healthy if I didn't have scleroderma, but it seems to effect every part of my body. I had scleroderma diagnosed about 16 years ago. I live in Australia, I enjoy reading all the letters but would love to read some from Australian people as well.

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For any of you who are using Bactraban, Cortoderm or any other topical antibiotics or steriods, do they work if your calcium deposits have not broken through to the skin surface? Mine are all under my skin--haven't broken through the skin. I'm wondering if the Bactraban works for those whose calcinoses have broken through and maybe gotten infected?

Also, once you started getting them, did you just keep getting more? I have had CREST for about 10 years, but just started getting calcinoses about a year or so ago. First one in one finger and now about 3 in that finger, 2 in another finger and one on my elbow. Do they just keep forming all over the place?

Thank you for sharing your experiences with medication and the progression of these buggers.
One uncool mom

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Hi everyone, I too have the calinosis but only in my fingers. I don't use anything on them. I've only had one come out and it was like a little hard ball. I have no idea how to get rid of them. My doctor says there is nothing that can be done unless you want them surgically removed, as JustJen stated. Only when they become infected have I've been able to get rid of them. I was on Bacterium and they finally broke. What a relief.

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Thank you, Weareinthistogether. How interesting that, in your case, an infection has actually been a blessing, in that it helped you to get rid of some calcinoses. When you say they broke, I assume you mean they actually broke through the skin surface?

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Here's a copy of something I posted previously (Feb 1920ll):

I just ran across this interesting 1990 article: http://www.ncbi.nlm.nih.gov/pubmed/2390132 . It says diltiazem may reduce the size of calcinosis lesions as well as preventing new ones from forming.

Then in 1995 this article was published: http://www.ncbi.nlm.nih.gov/pubmed/2390132 also saying that diltiazem helped.

In 2005 this article: http://www.ncbi.nlm.nih.gov/pubmed/15757822 gave a case report of a single patient who had dramatic benefit with diltiazem.

In 1998 this article: http://www.ncbi.nlm.nih.gov/pubmed/9709184 showed a slight improvement with diltiazem in only 3 out of 12 patients. I wonder if the dose was lower?

Have any of you ever been treated with diltiazem for calcinosis (brand names are:

Cardizem

Cartia

Dilacor

Dilt

Diltia

Diltzac

Matzim

Taztia

Tiamate

Tiazac)

And if so, did it help your calcinosis?

*************************************************************************** ***********************************

This month a new article was published in the J Am Acad Dermatol. : http://www.ncbi.nlm.nih.gov/pubmed/21679811 . They say "No treatment has been generally accepted as standard therapy, although various treatments have been reported to be beneficial, including warfarin, bisphosphonates, minocycline, ceftriaxone, diltiazem, aluminium hydroxide, probenecid, intralesional corticosteroids, intravenous immunoglobulin, curettage, surgical excision, carbon dioxide laser, and extracorporeal shock wave lithotripsy."

Also in Jan 2011 was this article: http://www.ncbi.nlm.nih.gov/pubmed/21182506 , entitled, "A case of juvenile dermatomyositis with severe calcinosis and successful treatment with prednisone and diltiazem."

I know at least a few people on this site have reported using diliazem for their Raynaud's. It may not have helped the Raynaud's but did you happen to notice whether it helped your calcinosis?!

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Wow, DaisyDo,
You have a wealth of information. I tried Diltiazem for my Raynaud's and it DID NOT help, but at that time I didn't have any calcinoses. Maybe it would be worth another try. Interesting how some of these same drugs keep popping up for different symptoms of the same disease-----you quoted an article that mentioned that some people have gotten help from minocycline. Some people have claimed that their ENTIRE condition was improved with minocycline, and a few doctors have claimed that many autoimmune diseases, including scleroderma, are caused by a strange, unusual bacteria that is killed by long-term minocycline. Any opinions?

By the way, I have another question that is off-topic. I used to post on forums for a similar website, www.sclero.org, but they have mediators who actually ban discussions related to anything that is not standard, mainstream medicine. Does anyone know if they are funded by mainstream medicine? I found this out when they wouldn't post my discussion of minocycline, etc. I can't figure out why anyone would want to post on a discussion forum where they couldn't have open discussions? Since traditional medicine doesn't have a cure for our problems, don't we need to share about anything we have found that could be of use to others? I was flabbergasted that they are actually censoring discussions. Any opinions or information about this?

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oneuncoolmom, with regard to sclero.org, I agree with you on every point. I have no particular opinion on minocycline, but I am glad to see open discussion. This is a far, far better forum. The AP discussions can get pretty heated here at times, but that means we are all ALIVE!!! :)

Here we can post links to real research studies from the database of the National Library of Medicine. Here the administrators don't have the compulsion to rewrite one's every word. Here everything does NOT have to always be warm and fuzzy. Let's face it, this is not a warm and fuzzy disease. And yet at the same time there is plenty of mutual support here.

I'm really glad to be here and to try to contribute however I can.

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Thank you, DaisyDo for confirming my hunches. I really appreciate it, and can't believe I didn't discover this site sooner. I wonder which site started first. I was thinking that maybe this one came up after that one due to their roadblocks. But, I guess that isn't important, except for the people like me who don't know about this one and are missing out on treatments, etc. that might help them.

You are right about them making everything "warm and fuzzy" and that it is NOT a warm and fuzzy disease.

Thank you for your many contributions. They really do help.

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Thank you oneuncoolmom for your response. I guess what i meant about the calcinosis is that whatever is on my knuckle drained. When my doctor took a culture, he said that it was a calcinosis because he saw white. He also took an xray but not sure if he could tell with the xray or not. I questioned it myself, if in fact it was a calcinosis, because I know of only one time where I literally held a little white hard ball that came out of my finger. Does this make sense to you?

DaisyDo, I just want to thank you for all of your helpful sites and insight on all of these topics. You really do have a vast knowledge of these issues. I appreciate you sharing.

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Hi, I have had Scleroderma for 25 years. I also have universal calcinosis(meaning all over the place). For many years they were soft and toothpaste like filled. But after 10 years of having them they turned to concrete. They have not drained in years and are glued into muscle and skin. I use to have the most painful surgically removed, I dont feel this is a good answer. It produced so much trauma to the area. I have been on minocycline for 3 years now. As my skin has softened, I have been able to gain 15 lbs. Thank goodness, some padding. I can say, I have not had any new cal dep, that I can tell. A few rocks have been coming out of my skin. There are some on my knee that are starting to look full, like softening and coming to the surface. I cant believe I am looking forward to the day they start to drain out of my body. I want them OUT! Best to all. M B

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