Another newbie with lupus

confused55 · Newbie Alert Joined: 13 Jun 2008 Posts: 4 Location: Wisc.

Here I didn't know how many of us there were,till I got on the net.
I"m a grandma that found out after all these yrs. what was causing me all my pains and problems. Knew it wasn't in my head like they all tried to get me to believe. Do any of you have the calcinosis- it itches, hives up-and drains. Then it scabs deep for weeks. When real bad will do this several times a month! Have them in arm & upper right side of shoulder-to mid back! Scarred and discolored. Leathery But feels smooth ! Sounds strange. Hope I'm not the only one with this. Will wait to hear from some of you, I hope. Have read alot of your stories. Got me brave enough to try this sharing online. Bless-you all, Confused 55
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sick n tired · Bear Cub Joined: 18 Nov 2007 Posts: 630 Location: Texas

Hey Confused,

I too am a grandmother...my daughter just had our first grandblessing...

Welcome to our site...I was just diagnosed back last September after years of it being "all in my head", too. I do not have the skin rashes like yours were described, though. It almost sounds like scleraderma. That is just one of the illness that can have calcinosis. Also that vitamin D deficiency and dermamytosis can cause the lesions.

Wow that must be quite uncomfortable...my rashes have not gotten that bad. I do hope that staying out of the sun and uv light will help slow down or stop the outbreaks.

Blessings,

Karen
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I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

KathyW1958 · Bear Joined: 12 Jun 2008 Posts: 693

Hi Confused,

Nice to meet you. I have had Lupus for most of my life, but like you did not get diagnosed until I was 36. I have a cutaneous rash on my feet and hands that is due to Lupus skin vasculitis. I am wondering if they tested you for Discoidal Lupus and or Scleroderma. Do you have a sun sensitivity? The sun sensitivity is a big problem with me. I am just wondering. Welcome to the forum and there are a lot of us here. There a lot of wonderful folks here that can help out a lot. God Bless.

Kathy
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Saysusie · Posted: Mon Jun 16, 2008 1:52 pm Post subject:

Hi Confused;
Welcome to our family. I am glad that you found us and that you decided to join us.
Calcinosis cutis is a term used to describe a group of disorders in which calcium deposits form in the skin. It is classified into 4 major types according to etiology: dystrophic, metastatic, iatrogenic, and idiopathic. A few rare types have been variably classified as dystrophic or idiopathic. These include calcinosis cutis circumscripta, calcinosis cutis universalis, tumoral calcinosis, and transplant-associated calcinosis cutis.
In all cases of calcinosis cutis, insoluble compounds of calcium are deposited within the skin due to local and/or systemic factors.
Lupus patients often get the systemic form of Calcinosis. Calcinosis is also common in Scleroderma (another auto-immune disorder that often overlaps with Lupus). The systemic forms of scleroderma can cause small white calcium lumps to form under the skin on fingers or other areas of the body. The lumps may break through the skin and leak a chalky white liquid. These most commonly occur on the hands, or near joints such as elbows or knees, although they may appear anywhere. Calcinosis may range from one very tiny deposit, to large (and often painful) clusters.
A few conditions, other than Lupus and scleroderma, may also cause calcinosis, such as dermatomyositis, Vitamin D, tumors, and parasitic infections.
Treatment will vary, depending upon the type of calcinosis. Numerous drugs, hormones, and a host of non-specific measures have been used unsuccessfully in the treatment of calcinosis. Oral low-dose anti-coagulant therapy has been effective occasionally in preventing and reversing subcutaneous calcinosis. Surgical excision of large masses may be helpful in selected instances. Colchicine may be effective in reducing soft tissue inflammation surrounding such deposits, along with nonsteroidal anti-inflammatory drugs. Treatment of metastatic calcification at present consists mainly of early surgical excision of the calcified masses, which rarely recur at the same site. In time, new deposits may appear around other joints.
So, basically, treatment consists of warfarin, colchicine, probenecid, bisphosphonates, diltiazem, minocycline, aluminum hydroxide, salicylate, surgical extirpation, and carbon dioxide laser therapies. However, no treatment has convincingly prevented or reduced calcinosis.

I hope that this information has been helpful to you.

Peace and Blessings
Saysusie
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sits_inthe_corner · Posted: Mon Jun 16, 2008 3:07 pm Post subject:

Welcome confused.
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confused55 · Newbie Alert Joined: 13 Jun 2008 Posts: 4 Location: Wisc.

I want to thank you and for your replies! It helped me out aolt. For all you other newbies- jump right in and join! you'll be glad you did! It's get to be able to have an enlightening disscussion with other people like us. Tried to re-plant out side to day before the sun came out. Almost made it. But paying for it now! Severe itching and not to mention I got chest pains. By the way I've been on coumadin for many years due to other health issues. Won't depress with that stuff. We've all been there in some way or another. Love ya all
Confused55
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Live your life to the fullest.

Oluwa · Posted: Tue Jun 17, 2008 4:54 am Post subject:

Hi Confused55..

Hey welcoming you with open arms...I am happy to you found us in the vast cyberspace. Amazing at a few strokes of the finger tips..here you are, here we are...welcoming you...

Know you can talk about anything...even the stuff that is depressing. I find if we write our thoughts out it alleviates some or all of the unhappy we may feel. And when one helps another by responding it helps them too...and in reading one another we see us...

Indirectly and directly it all connects and the outcome is positive...Yahay!

Again welcome and see you about...be well.
Hugs,
Oluwa