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Calcinosis Update


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#1 miocean

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Posted 09 December 2014 - 07:22 AM

I had my 6 month appointment with my scleroderma specialist and have some information to update on my calcinosis on the buttocks issue. The calcinosis are in the soft tissue of my lower buttocks and down my inner thighs. The biggest mass is on the right side, measures the size of a large orange, the left side is the size of a small orange but that is the side where they are on the surface and hurt the most. Imagine bags the size of the oranges filled with rocks and pebbles of all different sizes and shapes, some smooth and some pointed, then put them where you sit and that is my nemesis right now. The discouraging thing is that they do not know why calcinosis forms or what helps to get rid of it, nothing seems to work.

 

I am in a study, A Prospective, Observational Study of Calcinosis in a single-center population with scleroderma-spectrum disorders. This is purely observational and is to help understand who may be at risk for calcinosis, why it occurs in some and not in others. My doctor measures the calcinosis and takes notes but that is all. Since I had a small amount of leakage from one on the surface I am now in another study, Crystal analysis of draining material from scleroderma-related calcinosis site. The expectation is to permit better understanding of the composition of the calcinosis, what pathways may be abnormal in allowing these to form in the soft tissues, and why some are more destructive than others. The goal is to find better treatment for scleroderma calcinosis. I have some small vials to capture any leakage, even if it is the smallest drop on the tip of a cotton swab, and packaging to mail it in.

 

My doctor suggested using heat to make it feel better so I am sitting on a heating pad right now. She also suggested a product like Ben-Gay and just the thought of that makes me want to cry. I wake up in the morning in pain, have trouble sitting places, and it even hurts when I walk now. I bought a cushion to sit on but that puts the pressure right on them so that is no good. I am considering exploring more surgical options at different locations in the future to see if there is a less invasive way of giving me some relief.

 

It is thought that for some reason the body is drawing calcium out of the bones and depositing it in the soft tissues. I am scheduled for a bone density test later this week. My doctor has been wanting to put me on medication for osteopenia for a while now but things like the kidney transplant and my esophagus have put it off. She said there are many doctors studying the calcinosis process right now so hopefully answers will be coming soon to help.

 

I'll keep you posted.

 

miocean


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#2 Shelley Ensz

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Posted 09 December 2014 - 06:02 PM

Hi Miocean,

 

Thanks for the update on your calcinosis. The studies sound interesting and it sounds like you will be able to collect a lot of crystals. I know they suspect Vitamin D toxicity and Vitamin K (depletion?), and blood thinners like warfarin, for causing some cases of calcinosis, but I assume you and your doctors covered those topics long ago. It will be great to have more results for both causes and treatments for calcinosis, won't it?

 

I'm not sure why you find a numbing gel to be upsetting, unless it would just be so very insufficient. I'm sure I would have run out of patience with it all long ago!  Yes, I know they say it will probably just come back, or get infected, or bladda, but mentally, don't you also compute along the lines of yes, but, for one brief but glorious moment it will be GONE?!  So I do understand the surgical temptations, and the potential drawbacks of it, as well.

 

:emoticons-group-hug:


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#3 Joelf

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Posted 10 December 2014 - 05:17 AM

Hi Miocean,

 

I'm really sorry to hear about your calcinosis update and very sympathetic. :sorry:

It's so incredibly wearing to be in constant agony and I do hope that perhaps the results of your studies will mean that you might obtain some relief from the discomfort and pain.

 

Because the calcinosis is on your lower buttocks, I suppose that precludes you using something like a rubber ring to sit on or something similar, to alleviate the pressure when sitting down? (Rather like a giant corn plaster?)

 

I do hope you're able to get some relief from the pain very soon.

 

:emoticons-group-hug:

 

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#4 miocean

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Posted 10 December 2014 - 03:46 PM

Shelley, no one ever said anything about Vitamin D and recently, since my level was low I was put on Vitamin D3 1,000 mg and then raised to 2,000 mg. I don't know if it correlates but there is an increase in the calcinosis recently. I am not on any blood thinners nor have I had my vitamin K levels checked. I know that dialysis can cause calcinosis but it is getting worse and I am not on dialysis, thankfully.

 

Jo, I bought a cushion to sit on but it puts the pressure right on the areas that hurt the most so it doesn't work. I am usually ok on a soft surface, hard wood chairs are killers. I would need to carry around a huge inner tube

 

I am going to check with my doctors about my Vitamin D. My level was 31, the low normal is 30.

 

miocean


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#5 Kathy D

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Posted 10 December 2014 - 09:08 PM

:sorry:   I had a pillow for breastfeeding a few years ago, it's a donut shape, but it can be spread out to more of a horseshoe shape,,,,, dear husband puts around his neck and naps upright in a chair LOL.  I wonder if that may be of some comfort for you on your wooden chairs?  Put the pressure on your perimeter while supporting your lower buttocks?  PM me for a popular brand name of them if you are interested.

 

 

Also, sorry for the TMI, PM me on this as well if you like.  Are these close to the rectum?  I have had more frequent problems there the last few years and its getting uncomfortable.  Too long of a story why they have not been actually seen, but my last OB said some people are more prone than others and guessed they were abcesses, I am not sure they actually are...

 

Interested on an update from you on the Vit D Shelley mentioned too:)


Diffuse Scleroderma Diagnosed March 2009