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lynday
05-09-2012, 05:11 PM
Does anyone know what Calcinosis is? I am being tested for this? I read that it could be a form of scleroderma???? Too much info on Internet to understand! I thought someone could break it down for me!
Hugs
Lynday

ritzbit2
05-09-2012, 05:31 PM
Yes these are associated with scleroderma. It is another autoimmune disease and from my understanding it typically has more skin involvement. It literally means hardening of the skin. There are many different forms of scleroderma and the one that I think is associated with the calcinosis is called CREST syndrome of limited scleroderma. I don't know as much about scleroderma as I do lupus but I have looked into it alot because I have a suspicion that I might have an overlap of that. TripLexie has diffuse scleroderma so maybe she will have some helpful info for you! I do know that one antibody they use to test for sclero is Scl-70 which doesn't always show up in sclero but when you test positive for it that is a good indicator that you have it from what I've read. Here is something I found online. http://www.mayoclinic.com/health/crest-syndrome/DS00580/DSECTION=symptoms I hope you get some answers soon!

tripLexie
05-10-2012, 06:00 AM
Hello Lynday. Yes calcinosis is very common with Scleroderma, and more commonly, the sub-type form of CREST sydrome. Calcinosis also occurs in Mixed Connective Tissue Disease, which is when you have several autoimmune manisfestiations with aspects of several diseases like Lupus, Sclero, RA, etc. Classicly, MCTD was a mixture of clinical sings of SLE, RA, Sclerodema, and dermamyosits or polymyositis. Now it's more common to overlap with several other auto-immune diseases, not just the ones I mentioned above.

I suggest you ask you rheumy or PCP to do another blood test for all your antibodies.. The antibodies for Sclero are usually scl-70, but its more common with the diffuse form. Anti-centrome are the ones more commonly found in CREST. Anti-RNP are usually found in MCTD. Though, as you may already know, all these blood tests are not specific to anything 100% and diagnostically cannot stand alone. You've got to have the signs and sypmtoms.

I would do some research on MCTD, as well as CREST sydrome, to understand the diseases better. DO NOT overwhelm yourself with too much information. Remember, you're only reading up on them to be a good patient, not to diagnose yourself. That's how panic and anxiety happen. When my bloodwork came back with the high levels scl-70 and anti-RNP I must of spent 24 hours on the internet overwhelming myself with information- and I hadn't even been to my first appt. with the rheumy yet.

Good luck and let me know how the test works, I'm interested because I've had a few possible (and extremely mild) cases of calcinosis.. Though the docs think it was just a rash, so who knows. Good luck!!

lynday
05-10-2012, 12:19 PM
WOW!!!!! thank you both so much for the useful information. I saw the rash on me but just thought i was having an allergic reaction. I let it sit for 5 days. Finally when it was not going away i went to my regualur dr. who put me intouch with a dermotologist. Never in a million years did I think I would have to get a biopisey of the rash. I few stiches later and this is what the dr. is telling me. Now my head is spinning so let me see....I have had recent blood taken My rnp came bak normal this time...last time it was a 3.7 so i'm thinking that was a false postive. However my ANA came back even higher than before. I tested negetive for all of the other ana panels. But i was tested for dry eye and dry mouth both came back postive. We know i have Sjorens and raynords...The dr. did mention i could have Sclerderma due to the fact that my esphogus is bothering me when i swallow. Now the dr. is telling me my rash could be crest sydrome and of course he mentioned so much. My question is...if you have this syndrom will the plaqunil help...also does this automatically mean my skin will harden.......will this stay with me forever...ugh!!!!! In the meantime thank you both so much...i should also tell u that i do have UCTD.........I guess it all ties in...
hugs
LynDay

tripLexie
05-11-2012, 07:32 AM
First thing I will say, I know that ANA titre levels, whether they come back normal or high, or even higher than normal, do not correlate with disease activity OR severity. My ANA titre flucuates like crazy. It's always happenstance when my ANA tests high.. I've only caught it 3 times in the past 10 years. Also, if you tested high for the anti-RNP, don't assume it's a false postive. In Febuary, when my PCP ran the lupus/RA panel, my ANA came back high (1:320) speckled/homogenous with high levels of RNP and scl-70. Less than a month later, all this stuff was tested again by my rheumy and it all came back in normal ranges. These things flucuate and doctors don't know why. I was feeling meausurably worse during the second course of bloodwork and it was normal.

You need to get your motility checked in the esophogaus. Things like an upper GI (an x-ray to check for reflux or other esophogeal issues) can be done or even an EGD (the scope your esophogaus and stomach) although this procedure is typically expensive. I've been told over and over I need to go into the derm. or PCP so they can biopsy my rash when it's there.. LOL I usually wait because my thought process is "let me see if it get's worse, that way he can see it when it's at it's peak" and by time I see him it is gone. The thing with CREST, or any other AI disease, they don't know much about the cause of it, so in turn, they don't know much on how to 'cure' it. Most of these diseases will all be treated the same - by alleviating symptoms. I know it sucks to hear, but getting a confirmed diagnosis is really for validation, than anything. Most likely the treatment for your UCTD is going to be very similar to that of CREST. Of course, if you do have calcinosis, I'm sure there is a specific drug to allieviate the process.

As far as skin hardening goes, if you start to get it, you'll know you most likeley have CREST. Althogh, I've seen on forums that not everyone gets it. I suggest you visit the sceroderma 'inspire' forum.. Just google that.. It's full of personal experience and you may be able to relate with them or even ask them questions. Hope this helps!!

magistramarla
05-12-2012, 09:37 PM
Lynday,
I replied on your other thread with an article explaining UCTD and MCTD. I wonder if this calcinosis is just a verification that you do have the scleroderma component of MCTD? I didn't seem to have scleroderma, but my doc still called mine MCTD because I have an overlap of several AI diseases.
As we've all noted though, lucky for us, the treatments for almost all of the AI diseases are the same - starting with good old Plaquenil.
Keep us informed what you find out.
Hugs,
Marla

lynday
05-13-2012, 02:14 PM
Thank You Thank You Thank You........This support group has been so helpful to me. I have felt so alone and confused with all this. I have taken all of the advice above...I have looked at the websites...the support groups. I have gone to the eye dr. and gotten my rash byopsied........I have really been hit hard in the last few weeks and this support group has really been my rock. I read everyones post and i laugh with u and cry with you. i feel everyones frustration and sorrow. Ty all for helping me understand why i feel this way.....I know that brighter days are ahead of me...i just have to get there...I have kept my sickness a secret from my kids and friends which makes it harder to live with...i'm thinking i need to open up and let some more people in....As you have asked I will keep everyone posted on my progress, and please keep blogging. I have learned so much....
hugs to all
Lyn Day

tripLexie
05-14-2012, 07:02 AM
Lyn Day, DON'T hide your condition! It will only bring more stress upon you, which in turn, will bring more pain upon you! You may or may not find out your family and friends do not how to react to such news or they may be very supportive, or they may not. It'll be a struggle to see them not understand what's going on, especially if you 'don't look sick' but I assure you they all love you and with time they will find their ways to show their support. Or hell, maybe I'm wrong and they end up being as supportive as you need! I had issues with my boyfriend because he wasn't very comforting.. He's slowly but surely making an effot.. And my mom has explained to me that some men, not all, but most, have the need to provide protection for their woman. Shelter from harm, etc. When you get sick with something that is completely out of their control, and there is nothing they can do (but, be supportive and show empathy.. hehe) they don't react they we all want them to. He's making his efforts and I'm learning to now let the fact that he doesn't know how to 'support me' they way I want him to doesn't mean he doesn't love me or support me any less. I'm not sure if there is a man in your life, but this information can hold true for lots of people, espeically the ones that feel 'protective' of you. Brace yourself for those who may react this way. But DO NOT hide it! You cannot hold all the weight for this. I cannot imagine hiding this from anyone. Please promise us you will lift (some) of this weight off your shoulders!!!!

lynday
05-14-2012, 05:47 PM
Hi triple Lexi
Thank you for the beautiful post! I have the most amazing husband one could ask for! He has gone on every dr appt with me. He knows I am down and out!!! I have not posted any pics or did any profile information. It u surely can find me on face book!! I have a great family but I'm so private and a bit in denial! I'm also scared to open up in fear that people wont understand! That's why I joined this support group!!! I feel like yesterday I was working out and today I'm stu k in bed.... Meaning one day I was so healthy and enjoying life and than bam!!! It all went down Jill Ina day! I feel so gross have not been to gym in over two months!!! Everything hurts or tingles or itches!! I'm so lost and confused. I do not even know how to complain about this be ause every day I wake up with a different symptom. How can one thing wipe u out so much? On another note I'm so happy u have a compassionate bfreind! I'm glad ur happy and helping me get through this. I will keep u informed! And a million thank you
Lynday