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Calcinosis on buttocks


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#1 miocean

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Posted 18 January 2010 - 05:26 AM

I have read a lot of posts on calcinosis and have been surprised at some of the places it is formed on the body. I have also read that there is really nothing effective in treating it.

I have had diffuse scleroderma for five years now and have developed a very large area of calcinosis on my lower buttocks. At first it was just small hard areas, then it became very lumpy and bumpy. It hasn't been a problem until recently and now it is starting to be bothersome. I was at a friend's yesterday and was sitting on a hard wooden chair. I adjusted my position several times to get comfortable and finally had to stand up. My computer chair has a thin cushion on it and I can feel the calcinosis through it. Has anyone else had calcinosis there? My scleroderma specialist told me I could have them removed and to go to a general surgeon. Does surgery work? It is in a very delicate area and covers quite an expanse so I can't imagine what it would be like to have them removed.

The only other place I had calcinosis was on my upper neck. About a year into the disease my neck started to really bother me and nothing I did helped. I went to an orthopedist who X-rayed it and immediately sent me to a neck specialist. After tests he wasn't sure what is was and thought it might be a tumor so I had to have a biopsy. It ended up being calcinosis and whatever chunk he took out to biopsy solved the problem because it hasn't hurt since. I was really sick after the surgery, throwing up like crazy and had to stay in the hospital a couple of days but no problem since.

Seems like a couple of years ago I read on the forum about a girl whose mother had calcinosis on her buttocks and was really painful and discharging. I don't remember what happened. Any thoughts?

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#2 enjoytheride

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Posted 18 January 2010 - 09:33 AM

What a lousy place to have that.........
My experience with surgery was that any small area not taken out just kept spreading. I have only had surgery on the top of a finger- a small area. It did take sometime (about a year or so) to become a bother again. I did lose a lot of the finger tip.
It's a hard choice to have to make.
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#3 Amanda Thorpe

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Posted 18 January 2010 - 11:13 AM

Hello Miocean

I only found a topic by the husband of a woman with diffuse calcinosis with buttock involvement.

I am sorry you're having this issue on top of everything else, it's very clear that calcinois can be a major problem but the treatment of it leaves a lot to be desired.

Take care.
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#4 Catty

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Posted 20 January 2010 - 06:09 AM

I have had and still do have calcinosis...the only answer to them that I have found is to have them removed...If your Dr. will remove all that he see's there is less chance it will come back in that same place. I have some on my upper buttocks...does not hurt me while sitting down but when I turn over in the bed at night...I feel them.
Good luck!
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#5 miocean

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Posted 10 February 2010 - 07:47 AM

I am glad that no one else is suffering with calcinosis on their lower buttocks. It is really getting bothersome. Last night I wore jeans to dialysis. I usually wear soft stretchy pants. After 3 hours of sitting in the chair my butt started to hurt. I will never make that mistake again! I looked up calcinosis on the buttocks on the internet and they had a site with pictures. Oh my goodness, they were horrible looking! I hope that doesn't happen to me.

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#6 Amanda Thorpe

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Posted 10 February 2010 - 11:04 AM

Hello Miocean

You must have seen the same sites I did when looking up the topic. After seeing a picture of one poor woman I kept saying to myself "I will not have calcinosis, I will not have calcinosis....!" I am sure that will not happen to you.

Take care.
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#7 Catty

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Posted 10 February 2010 - 12:15 PM

Wow!!! I also found that picture of that poor woman with the calcinosis so bad on her buttocks as well as her elbow.

I don't have a problem at all compared to her! I have had most of mine removed. Thank goodness. Those pictures were so....so... so sad.

My heart went out to her. When we think we have problems we can always find someone else that is far worse off.

It is a shame that they cannot find a cure for calcinosis.

Hugs,

Shirley

#8 MaryFanPhilly

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Posted 13 February 2010 - 05:38 AM

I too have painful calcinosis... my rheumatologist is not thrilled with the idea of removing the most bothersome ones (I have two on my index finger) because he said the circulation isn't great to begin with, and besides (he said) they can often grow back. I didn't know that. It is disheartening... anyone would think it's not a big deal but having to live with them, we know better. I've been having trouble sitting for quite a while but never considered that it could be a calcinosis. Can you feel it on the base of your spine? I am rather a (ahem) cushy girl so I can't feel anything from the outside. Remember, we sometimes see pictures of the absolute worst case scenarios.... that won't be us!!!!
Hugs, Mary
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#9 JBG

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Posted 13 February 2010 - 10:23 AM

I also experience very painful calcinosis on my fingers. In addition, I am currently recuperating from surgery for the removal of a cyst filled with calcium from my the bottom of my foot. Fortunately, the last doctor I went to agreed that I needed the cyst removed even though I have poor circulation in my feet.

#10 Shelley Ensz

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Posted 24 February 2010 - 03:35 AM

Oh my goodness. I kept wondering what the big hoopla was about the calcinosis on buttocks photo. Then I looked it up, and added a link to it on our main site. For those with scleroderma, please note that this particular photo is of someone with dermatomyositis. For those with dermatomyositis, please note this is the worst case of calcinosis that I have ever seen a photo of, so far.
Warm Hugs,

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#11 Shelley Ensz

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Posted 25 February 2010 - 03:52 AM

Hi Andyko,

I know what you mean! My aches and pains just evaporated on the spot when I looked at that photo. I sure felt a lot of pain for her, but it really made me count my blessings for what I am not dealing with today (and most likely, never!).

What is that they say, about how most of us would choose to keep our own problems, rather than trade them with someone else? When we "hear" other people's problems, I rather think it doesn't strike us as deeply as it does when we "see" them. And many of us are dealing with largely invisible health issues, which I'm sure doesn't make them any better.

Oh, I'm digressing or something.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 miocean

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Posted 03 March 2010 - 05:13 AM

Since I started this post my pain and discomfort from the calcinosis has become worse. It is becoming difficult to sit even on softer surfaces. I put a pillow on my computer chair and it helps a little but I still have to adjust my position every once in a while to move the pressure to another spot.

I see my sclero specialist on Friday and will definitely bring this up. Last I showed it to her she said I could go to a general surgeon and have them removed. I don't think surgery is an option for me. The area is too widespread for one thing. Another is I can't have surgery being this close to a kidney transplant. If I lost blood and needed a transfusion it would totally mess up my tissue typing in my blood. From what I have read there is no cure or prevention for calcinosis. Those of you who have had surgery and experience success are very fortunate.

Over the five years that I have had scleroderma I have been very fortunate not to have any pain. I would read posts from others in pain and feel so sorry for them. Now it is my turn. What do you do for the pain? I think I need some kind of pain management. I have also developed two new spots of calcinosis on my little finger.

Thanks for any responses.

miocean
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#13 agilitygirl

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Posted 03 March 2010 - 11:54 AM

Thanks for posting the pictures. My reaction was the same, well this is certainly a reality check. However, the picture of the elbow also confirmed that I am indeed getting several on my own.

Miocean, Hope all goes well with your upcoming transplant. Sending some hugs your way. Gale

#14 miocean

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Posted 06 March 2010 - 04:24 AM

Saw my scleroderma specialist yesterday and brought up the calcinosis again. She said I would have to have them surgically removed. I told her that was not an option at this time and she agreed. Then she asked to see them. I showed her and she touched a spot and it hurt so badly that I literally jumped! She brought in a sample of a patch that is about 4-5 inches in diameter. She said to cut it into pieces and put it over the calcinosis. You can leave it on a week and shower and bathe with it. I haven't tried it yet but she also gave me a prescription for them so I will let you know how it works. I guess that someday I will have to have them removed. I'll cross that bridge when I come to it. Thank you for all your replies and for posting the picture for others to become aware of this.

miocean
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#15 miocean

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Posted 10 March 2010 - 02:15 AM

Just wanted to update you. I tried the patch my doctor recommended and really didn't experience any relief. My worst area of calcinosis is in the crease where my buttocks meet my upper thigh so it was a very uncomfortable place to put the patch. I took it off yesterday and am still experiencing pain but no worse that with the patch. Good thing she gave me a sample and I didn't get the prescription filled. They are pretty expensive.

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#16 miocean

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Posted 04 July 2014 - 03:45 AM

Four years later...

 

After a lull in the multiplication of the calcinosis on my buttocks it seems to have taken on a life of its own. Not only is it increasing in amount and size, the pain from it is also. It is very uncomfortable to sit on a hard surface and now it hurts when I am laying down in bed. When I awake in the morning I am aware of the pain from it. I am very fortunate that it has not ulcerated or become infected.

 

I am in a study on calcinosis with my scleroderma specialist but all she does is look at it and measure it. Surgery is the only option yet she could not recommend a surgeon. I finally contacted the doctor that coordinated the removal of the calcinosis on my neck and have an appointment with him in a couple of weeks. I did not want to have surgery due to the risk of infection but I am afraid it is the only option. I asked my dermatologist about laser and he didn't think that would work.

 

Of course, I don't want to have it done this summer and ruin my beach time! I will let you know what I find out.

 

miocean


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#17 Joelf

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Posted 05 July 2014 - 07:43 AM

Hi Miocean,

 

Oh no, what a complete pain....in more ways than one!! :(

 

I'm so sorry to hear that the calcinosis has worsened again and that you may have to have surgery to correct it and I'm really hoping that it doesn't interfere with your summer beach time.

 

Please keep us updated after your appointment.

 

Best wishes,


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#18 Amanda Thorpe

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Posted 08 July 2014 - 04:53 AM

Hello Miocean

 

I just had that, an ulcer on the derriere that is and it's just the end...literally. Thankfully it healed quickly and was higher up as it were, an area of morphea just became sore and open, no idea why but thankfully it was short lived.

 

I am sorry that I know what you know, calcinosis has no real treatment and often returns, that said maybe surgery would work for you, if not permanently for some time? What have you got to lose?

 

Keep us posted.

 

Take care.


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#19 Shelley Ensz

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Posted 09 July 2014 - 09:14 AM

Hi Miocean,

 

Ouch, I hurt just reading about this.  And yours, too, Amanda. Just ouch, ouch, ouch.  :emoticons-i-care:

 

I figure, you might feel a bit better just scheduling the surgery. For after bikini season, of course.

 

I don't know about you, but I feel miraculously better every time I've been scheduled for surgery. Why, it takes me about two seconds, when confronted with the reality, to convince myself I'm just a hypochondriac and that whatever needs fixing is just a figment of my doctor's imagination, a mix-up of x-rays, or that when I waken tomorrow, it will be mysteriously gone.  The pain evaporates on the spot! Why, even my rupturing appendix suddenly quelled its angst and told me it was just a stray cramp and that I should not listen to the surgeon, as I was being wheeled down the aisle.

 

Therefore my theory is that the sooner you get the surgery on the books, the better.  You might enjoy a few weeks of numbing relief from the calcinosis, once it realizes it has been scheduled for extinction!  At least, that's my hope for you. 

 

:emoticons-group-hug:


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Shelley Ensz
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#20 miocean

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Posted 18 July 2014 - 06:58 PM

The meeting with the surgeon went as expected today except it was the fastest doctor appointment I have ever had! No one in the waiting room, no forms to fill out as I was already in the system, and a quick evaluation. I have a CT scan scheduled for next week and then will make a follow up to go over a plan. He spoke about the risk of infection and that the calcinosis can come back, things I am well aware of. He also mentioned bringing in a plastic surgeon in addition to doing everything to minimize the risks.

I'll see where that takes me. I feel I am in good hands. I just don't want anything to interfere with all the plans I've made to live life to the fullest!

miocean
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