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View Full Version : Help, Saysusie? Anyone? Lauri's ??? of the Day...



laurid8967
07-15-2008, 12:08 PM
Hi all -
Yup, another question...I have an appt on the 28th, and want to be prepared, you know? And I know this is important.
OK, so when I began to get sick last winter (my flare lasted from Thanksgiving to June), I was sick with the usual stuff: fatigue, pain, swelling, sores, hairloss, and BAD hip pain. Also, on 4 seperate occasions, I developed a lump/bump - all about the same size - 3"x 3" around, and about 1" raised off of the skin. Once it was on my lower back (next to the bottom of my spine), once on my right hip, once on the top of my shin (left of the shin bone), and once on my lower calf. They all had the same sensation/pain - hurt if you press hard but NOT a bruise, and I didnt bump these places at all - they just appeared. At this time as well, my legs were really swollen and felt as if there were no circulation in my legs. My legs were sore to the touch, especially my lower legs. I also had that ugly lacy rash/pattern on both insides of my knees, which also hurt to touch. I had a fever as well.
The bumps happened at different times throughout Jan - March. The one on the back, I woke up and it was there. THe others just popped out of nowhere as well. I did go to the ER with the one on my back and had a rally bad experience/got no answers. They sent me to the part of the ER where you go for sprains and stiches, and the triage nurse had written down that I fell and got a bump on my back. When I told the doctor that I had been sick for weeks, and it just appeared, she did and Xray (OK, I even knew the xray wouldnt show anything - it wasnt bone) and a chest xray ( I sounded congested). They werent even goint to run blood work until my husband said something. When they did, and got the results back, they said my sed rate was high and CRP, and put me on steroids and antibiotics. I felt better until the taper started, and then got the subsequent bumps.
I did take a picture of the one on my shin, because it was RIGHT IN THE MIDDLE of my shin - very strange place - and was big. Like I said, my legs felt as if there were no blood getting all the way down at the time - llike I had elastics on the top of my thighs cutting off circulation.
All I could come up with at the time was osteomyelitis (bone infection), though, of course Im not a doctor. By the time I went to see my GP (yes, stupid), the bumps were gone, but I was still feeling lousy.
Any ideas? Anyone ever have anything like this? THis all came right before my Dx with the lupus. Related? Saysusie - any ideas?
I would be interested in ALL info...I never figured it out and it was REALLY strange...
Love you guys!
Lauri

laurid8967
07-15-2008, 12:59 PM
I found the rash that was on the inside of my knees - livedo reticularis...thats EXACTLY what it looks like (its still faintly there actually) and it hurt to even graze my fingers along the skin there...ouch, ouch - all the while had the sensation that there was no circulation there too....so weird..But if anyone can figure it out, its you..but....No PRESSURE!! lol - just kidding, if you know anything - great - if not, you're still awesome!!

Thanks again,
Love Lauri

Saysusie
07-16-2008, 12:12 PM
Hi Lauri;
Many of the rheumatic diseases (systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), and the vasculitides among them, manifest as “lumps, bumps, and holes” in various places on the body. Each of these diseases works through specific mechanisms on different structures of the skin to produce a distinctive pathology.

Lupus is associated with a variety of cutaneous (skin) manifestations that can occur on the lower extremities and other places on the body; these include erythema nodosum (an inflammation of the fat cells under the skin), lupus panniculitis (explanation below), calcinosis cutis (calcium deposits that form in/under the skin), antiphospholipid syndrome (with thromboses (formation of a clot or thrombus inside a blood vessel, obstructing the flow of blood through the circulatory system) and livedo reticularis (a vascular condition characterized by purplish mottling of the skin), pyoderma gangrenosum (a disease that causes tissue to become necrotic (to die), causing deep ulcers that usually occur on the legs but can occur on other parts of the body), dermatofibromas (harmless benign skin growths that are hard papules (rounded bumps) that may appear in a variety of colors, usually brownish to tan), and,Papulonodular Dermal Mucinosis (also termed nodular cutaneous lupus mucinosis, these are skin-colored papules and nodules that can be seen within or outside of the typical lesions of lupus erythematosus. It typically involves the trunk and upper extremities; however, the face and other areas of the body may also be affected and it can occur in areas clinically free of classic lupus erythematosus). Approximately one-half of patients with Papulonodular Mucinosis have associated kidney disease, and slightly more than half have arthritis (joint) symptoms. Treatment usually consists of antimalarials and corticosteroids (Prednisone).

Lupus panniculitis presents as hard, callous, nodules on the arms, buttocks, head, neck, and thighs. The skin in these areas can be ulcerated, red and scaly. More than 40% of patients with Lupus panniculitis also have changes in their skin consistent with the lesions of discoid Lupus. The differential diagnosis of lupus panniculitis includes Weber-Christian disease, cytophagic panniculitis, lymphocytoma cutis, lymphoma, traumatic panniculitis, factitial panniculitis, sarcoidosis, infectious cellulitis, and pancreatic panniculitis.
The treatment options for lupus panniculitis include antimalarials as well as topical and oral corticosteroids.

Calcinosis cutis is another cutaneous manifestation of Lupus. However, Lupus is only one of several diseases in which this form of calcification can be seen. Calcinosis can occur in areas of discoid LE and may manifest as nodules, plaques, or tumors composed of calcium salt deposits. The lesions are localized mainly on the extremities, in areas that are prone to trauma and no trauma has occured (like the shin, as you reported). Treatment usually consists of aluminum hydroxide, etidronate, and/or surgery.

The antiphospholipid syndrome (APS) may occur as a primary syndrome (on its own) or secondary to other diseases, most frequently Systemic Lupus Erythematosus. APS is characterized by the presence of antiphospholipid antibody (found in blood tests) and any or all of the following 4 major criteria: venous (vein) thrombosis (formation of a clot or thrombus inside a blood vessel, obstructing the flow of blood through the circulatory system), arterial (artery) thrombosis, recurrent pregnancy loss, and thrombocytopenia (can occur when the bone marrow does not produce enough platelets, as happens in leukemia and some anemias) or hemolytic anemia. The minor criterion is livedo reticularis (a vascular condition characterized by purplish mottling of the skin).

Your doctor will have to determine the exact cause of your particular lumps. Perhaps you can print this up and take it with you to help you and your doctor to determine what is causing your lumps/bumps. At the very least, it might help those nurses or PA's who tend to scratch their heads and say "duh" to know that there are some definite causes to lumps and bumps on the body when a person has Lupus.

Let us know how it goes and what you and your doctors decide!

Peace and Blessings
Saysusie

laurid8967
07-16-2008, 01:57 PM
Saysusie -
Thank you for taking the time...will you be my momma? Or favorite aunite?...lol

Your constant compassion and the time you take to help others is so amazing...you really are such a blessing to us all here....

In not-so-mushy-terms : YOU ROCK!!
Love and gratitude,
Lauri

Saysusie
07-17-2008, 10:42 AM
Thank You Lauri :lol:
Sure, I'll be your cyber-auntie....just call me Aunt Su-Z!!

Anyway, don't forget to talk to your doctor and let us know what is determined!

Peace and Blessings
Saysusie

DebbieE
07-18-2008, 07:16 AM
I can tell you what you had on the back of your knee is not livedo reticularis because I have it and it's not raised or feel like a rash, nor is it so localized.
This is off of mayo clinic on livedo reticularis.

Livedo reticularis is a vascular condition characterized by a purplish mottled discoloration of the skin, usually on the legs. This discoloration is described as lacy or net-like in appearance. Livedo reticularis can be a normal condition that causes no symptoms and needs no treatment. But it can also be associated with a serious underlying disorder, such as lupus, anti-phospholipid syndrome or Sneddon's syndrome. In addition, livedo reticularis may occur as a side effect of certain medications, such as hydroxyurea.

Livedo reticularis may be aggravated by cold exposure. If livedo reticularis is accompanied by pain or discomfort or if ulcers develop in the affected skin, further evaluation may be required. When necessary, treatment depends on the underlying cause, if known, and the severity of symptoms.

While it does say it can be accompanied with pain, the pain is not on the skin it's self, but more like nerve pain due to a decress in blood flow. That's also what causes the ulcers. It says it occurs most commonly on the legs and it means the entire leg not just a very small portion of it. For instance it might be darkest on my thighs, but it's still on the rest of my legs all the way down to the tops of my feet. It does not last non stop for days, but rather comes and goes; though if the underlying cause is not treated, the skin discoloration may eventually become permanent. It is an uncommon to rare side effect of only a handfull of auto-immune disorders with Lupus being one of them.

I hope this helped. I have it now on my arms and legs mostly, though when I get out of the shower, it occurs over my entire body. It is no longer effected by temperature either. It happens nearly constantly. I call it my road map because that's what it looks like. A road map of my capilaries all over my body. While certainly not attractive, the odds of pain or ulcers with it is really very small, but I'd really rather not look this way permantly. People already keep asking me if I am cold when it's 100 degrees outside, because that's what it looks like, like I'm very very cold.

laurid8967
07-18-2008, 02:40 PM
Hi Debbie,
Thanks for the post. I know my post was really confusing, so let me explain. I didnt have the bumps any where near where the lacy rash is. Also, they happened at seperate times. I was just explaining to Saysusie that I found that type of rash on the inside of my knees (its still faintly there right now) that I didnt know what the name of it was. When I saw all the photos of livedo reticularis, that is EXACTLY what it looks like.
My question was about the lumps that appeared at four different times over the winter, in four different places. They didnt have anything to do with the rash and they werent even near it. These lumps were not part of a rash at all....They were about half the size of a tennis ball each - one on my back, one on the top of my shin, one on the bottom, and one on my hip. They protruded out about one inch, and were about 3"x3". I must have made it sound like a "bump" that you would find in a rash, like a pimple...This was a LUMP.
The pictures I saw of livedo reticularis look exactly like what I have - whether I have it or not - who knows? The pictures I saw had included people who had only small areas of it on their arms and legs, not the whole arms and legs (some did, some didnt).
It also made sense to me because livedo ret. is caused by lack of circulation, which is exactly how I felt - as if there were no blood getting there. That type of weird sensation - not pain.
The LUMPS had a weird, but not huge, pain - to touch/press on it.
I think I didnt explain myself well at all!! Thank you for your reply, Im slways interested in learning new things. My GP looked at this rash and said to absolutely show it to my rheumie on the 28th. She said it looked lupus related. I go on the 28th, so maybe he has an idea of what it is. As for the lumps, theyve been gone for months...hopefully for good!!

Thanks again
Lauri