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kacklebird

Anyone with calcifications without skin involvement

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Does anyone in the group have calcifications without any skin involvement who have CREST/Limited Scleroderma? :emoticon-dont-know:

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Hi Kacklebird,

 

I think I missed welcoming you to the Forums. I love your user name!

 

It's my understanding that calcinosis and skin involvement aren't related, or to put it another way, you don't have to have skin involvement to develop calcinosis. Calcinosis (we're talking calcinosis cutis here) is due the deposit of insoluble calcium salts in the skin. I do know other conditions are listed as possible causes: several other autoimmune conditions where there is no skin involvement; localized skin trauma, such as an insect bite, burn, or infection; chronic kidney failure, etc. There's also idiopathic calcinosis, meaning there is no clear cause such as those listed above.

 

I hope this helps. Maybe someone who has CREST/limited or sine scleroderma AND calcinosis will chime in with personal experience.

 

Best wishes and once again, welcome.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Jeannie,

 

Thanks for your reply and glad you like the "kacklebird" name. My uncle nicknamed me that when I was a little girl. I have to say this seems like such a wonderful group of people on this site :emoticons-yes: My case is a little odd. Maybe I shouldn't say odd as after reading some of the stories here. I see many have gone through similar issues. I'll give a little of my history and try to make it as short as possible. I first developed Raynauds, puffy fingers/hands and some puffiness to my feet. Then a month later I developed joint pain, fevers, etc. So off to a rheumatologist after seeing my primary care physician. My primary care physician did order an ANA and it was positive at >1:640 and I had a speckled pattern so that showed something was going on. So off to my first visit to a rheumatologist. I was first told it was most likely that I had Scleroderma. A bunch of bloodwork was ordered and he said that my nailfolds were abnormal along with seeing some hemorrhages when he checked my nails. Then I returned for my 2nd visit to the same rheumatologist and he then said he felt I had features of both Scleroderma and Lupus. So he then called me Overlap Syndrome. I then got another opinion from another rheumatologist and was then told Lupus. So about 3 years into the disease I started having esophageal issues wtih swallowing, pain, regurgitation, etc. Since then a couple of other odd things have developed. So I started wondering again was it Overlap or Scleroderma. I think it's been either 7 or 8 years since initially getting diagnosed. So just about 2 months or so ago I developed a very small white round lump on my finger under the skin. So I started wondering if it was a calcification. I had to see my dermatologist doctor for my psoriasis last week and I showed it to him. He said he thought it looked like a cyst and could remove it. I told him no because I wanted my rheumatologist to look at it. I've never seen cysts that were white, but then again I'm not a doctor so who knows. I thought typically they had clear fluid, but maybe there are ones out there that are white. So then last night I noticed I have another one developing on another finger on the other hand. It looks just like the other one on my other finger, but it's just smaller. So now I'm really wondering if these could be calcifications, but I guess the best thing is to show my rheumatologist when I see her in a few weeks. I do have a high level of anti-RNP antibodies and I'm negative for anti-dsDNA. From what I've read it says that anyone with high levels of anti-RNP and a negative anti-dsDNA is highly suggestive of Overlap/MCTD. My ANA was 1:2560 when repeated by the second rheumatologist. I was also positive for anti-cardiolipin antibodies. Scl70 negative and Centromere negative. A few others were done, but I can't remember them off of the top of my head. So that's why I was really curious to know if there are any others in the group with very small calcifications on their fingers with Limited Scleroderma without or prior to any skin involvement. Also, any Overlappers/MCTD members that have calcifications or any of you heard of white cysts? I did take pics of them. I thought that was a good idea to take pics....I guess. Maybe they are just weird cysts, but I'll just wait and see what the rheumatologist has to say. Thanks for reading my long post.

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Hello kacklebird

 

Welcome to the forums! You might find it helpful to read our calcinosis resources because it contains pictures of it.

 

I've never had calcinosis so I can't add much other than to ask that you keep us updated with what your rheumatologist says.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Sweet, thank you for the welcome. I think this site is very educational with lots of good info.

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Hi Amanda,

 

Thank you for the link. I will definitely post after I see the rheumatologist.

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Welcome kacklebird! And I like the name as well! I got dubbed Beanie as a child and it has stuck, not sure if I am the little bean I used to be though hehe

 

:emoticons-group-hug: Group hugs and keep posting!

 

Cheers

Jean

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Hi there! I have multiple calcinosis and do not have skin involvement. I have GERD and telangiectasia so I met the CREST criteria. When I first started popping out with those white lumps, my primary doctor thought I might have a weird infection as it coincided with my treating one of my goats who had an abscess forming disease but several biopsies and cultures later, no infection was found and it was just calicium.

From that experience, I think that it is not clear what they are until they are actually tested. Could be wrong but if so, I went through a lot of tests without need.

They will periodically flair up and get a little worse. They will also get more formed and sometimes break out on the surface. They have never simply disappeared.

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Hi Jean,

 

I see you were nicknamed Beanie as a child. That's a cute one to have. Thanks for the welcome to the group. Seems to be a lot of nice and caring people here.

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Hi Kacklebird,

 

Welcome again to these forums!

 

Thankfully I don't suffer with calcinosis (so far!) but I do hope your visit to your rheumatologist gives you some satisfactory answers.

 

I'm looking forward to reading your posts!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Enjoy the Ride,

 

Thanks a bunch for responding to my post. I see you have calcifications without skin involvement. How long ago did you start with yours? I see they come right back too. I see yours were thought to be an infection at first. That's why I wanted my rheumatologist to see it before my dermatologist went cutting/removing it. I guess I can say I'm slightly suspicious and want confirmation that it is either a cyst or calcification. Do yours get really big or do they stay small? Whatever I have is small and the newest one is really small. Were you diagnosed with an autoimmune disease before being diagnosed with CREST/limited Scleroderma? Just curious to know and hope you don't mind me asking. These diseases can be so weird and mimic one another so I can understand why doctors have a hard time making a diagnosis or a correct diagnosis :emoticon-dont-know: . I think too in some cases they just have to wait and see what it evolves into. I feel so bad for everyone on this site who has Scleroderma. I see it can be very frightening for many or probably all and it's great to have others that they can turn to who truly understand what they're going through. At first I felt kind of funny posting, but after I read some stories like my own I felt okay then with posting. We may not all be alike in terms of symptoms/issues, but at least we can all relate to what it's like to live with a chronic debilitating condition. Hopefully, one day they will be able to find a cure or at least something to stop the progression of this/these diseases.

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Hi Jo,

 

Thanks for the welcome. I'm anxious to hear what my rheumatologist will say. I think it's best to get a second opinion anyway and especially if it looks suspicious. I will be sure to post what it is or isn't. This is a great group.

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Hello again! My CREST diagnosis was the result of a difference in opinion between the hand surgeon who looked at the lumps and thought I had CREST and my primary care doctor who thought that I did not. That lead to a referral to a rheumatologist who said yes. I think that if it wasn't for the calcinosis, which the doctor could see, he would still be mostly ignoring my complaints. So it was a sort of good thing.

 

I had been suffering from increasing fatigue and other miseries for some time before that referral but it had never been resolved- just different meds for pain. Since the diagnosis, I have received more directed meds and have improved a great deal.

 

I hope you get some resolution too- it does help.

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