View Full Version : Recently diagnosised and a question
04-11-2008, 11:55 AM
I was diagnosised about 2 months ago. The doctor is holding off on putting it on my chart though because my ANA was borderline. I go back next month to have the testing redone. He's hoping everything will just disappear. I've got blood and protein in my urine, as well as some other test results that came back questionable. Since then I've developed a rapid heart rate and high blood pressure. It's not all the time, but often that my heart rate gets up to 98+.
Now the question. Recently I've had this odd thing happen on my arms and thighs. My skin turns really white and my small blood vessels get really red and raised. It makes my arms and thighs look like a road map. Anyone else have this happen? And if so what is it? I took a pic of it and am taking it with me next time I see the doc.
04-11-2008, 01:39 PM
First let me be the welcome wagon. Welcome Debbie with an E.
I haven't had that..Yet!
I don't know all the symptoms of Lupus and other autoimmune diseases but could it be a type of vasculitis? Hypersensitivity vasculitis?
Protein and blood in the urine, I don't think one hopes it away...are you on any medication....When I had protein in my urine I was put on Prednisone.
What medication are you taking? Is your doctor a rheumatologist?
Hopefully someone can be more informative..we have some wonderful, bright, funny, caring people here..mingle about...
Cruise the forum, under symptoms..you may find something there. Or Use the Search at the top of this window...
Again welcome Debbie...
04-11-2008, 04:15 PM
Welcome to the board. The one urine test i had done was inconclusive because it had not been tested with in the four hour required time frame and so most of what they were looking for was obliterated. At least that's what it said on the results page. The test was never redone.
I'm in the process of moving to a new rhuemy, hopefully this one will give a hoot about what they are doing.
I'm sure one of the others will be along soon, and they well have more information for you. :)
04-11-2008, 10:24 PM
Lupus rash is very common and there are several different types of skin rashes:
* Acute Cutaneous Lupus Erythematosus usually presents as a red, raised rash in a butterfly distribution on the face. This blush is located in both cheeks and across the bridge of the nose. The lesion usually appears after sun exposure, but persists a few days to weeks before healing without scarring. It may be accompanied by erythematous lesions in other areas of the body. Usually more than 90% of the cases have positive ANA, as well as immunoglobulin deposits along the dermoepidermal junction by immunioflourescence studies of the involved skin.
* Subacute Cutaneous Lupus Erythematosus lesions may be in one area of the body (localized) or in several areas of the body (generalized). The maculopapular rash ([little spots or bumps] is a rash which includes macules (spots) and papules (bumps) by definition). This rash also usually occurs after sun exposure, the lesions are usually pruritic (itchy). It may involve any place on the body, and because the erythematosus lesions may involve palms and soles they resemble a drug reaction. The great majority of these lesions heal without scarring, however, persistent lesions that become crusty may heal with only slight atrophy of the skin. This type of rash is associated with a high prevalence (70%) of Ro(SS-A) antibodies; however, only 50% of cases have positive immunoglobulin deposition in lesional skin by immunofluorescence.
* Chronic Cutaneous Lupus Erythematosus, (aka: Discoid Lupus Erythematosus) usually involves the face, scalp and ears, but it may occur anywhere. The rash may be pruritic (itchy). The lesions at the beginning are erythematous (red), slightly elevated papules or plaques, that in time become raised, bright red, edematous (swollen and/or fluid-filled), later on the center becomes depressed, the color fades and becomes atrophic, while the edematous red periphery slowly enlarges and becomes irregular with some telangiectasias (small dilated blood vessels near the surface of the skin). In older lesions, follicular plugging characterized by small round areas of hyperkeratosis are noted. Later on the lesions heal with scar leaving a white area with or without hyperpigmentation (darker). These lesions usually heal with scarring and hyperpigmentation (darker) or hypopigmentation (lighter). I
* Lupus Panniculitis, appears as deep nodules. The lesion is situated below the skin in the subcutaneous tissue, and heals with a deep atrophy of the involved area.
* Bullous Lupus Erythematosus is characterized by the presence of blisters which contain a clear fluid. The rash usually appears in sun exposed areas, and sometimes is associated with burning sensation, mild itching or redness. Some papules may accompany the blisters. The lesion may resolve spontaneously usually without a scar after a week, but they reappear when the disease flares or episodically.
If any of these describe your skin condition, then they are symptoms of Lupus. Regardless, you might want to discuss them with your doctor to see what type of treatment can help you!
Peace and Blessings
04-12-2008, 11:43 AM
Thanks for the welcome all :)
I suspect vasculitis as I have the pin sized red dots on my hands, arms, and thighs. There are not so many that anyone would notice, but I've got 10 or so on my right hand alone, just spread out so it's not a nasty blob of them like I've seen pictures of.
No specialits yet. My doctor currently is just my GP. He's waiting on my ANA to be more conclusive to put the nail in the coffin so to speak for my diagnosis. I currently meet 6 out of the 11 markers though without a postive ANA. I have the molar rash (just a slight blush, but gets pretty red when I go out in the sun for awhile), evidence of kidney involvment, hair loss, nasal sores, joint pain and swelling, other blood work that indicates an inflamatory disease, and extreme fatigue.
I am not on a steriod of any kind or anything else. Just Meloxicam for the inflamation, muscle relaxers, pain pills, and now a beta blocker to help control my heart rate and blood pressure. Though another doctor saw me when I first went in because mine was booked up and did put me on Prednisone and I had almost complete remission. No stiffness in the mornings, very reduced pain and almost no fatigue. I was only on full strength for a week and then started stepping down the dosage to get off it. I had actually just gone on the 1 a day step down dose when I had my blood work done which is probably why my ANA was borderline.
My current doc doesn't want to put me on Prednisone for a couple of reasons. One is because he's trying to find things first that will work for long term rather than short term like Prednisone. I'm aware that the longer you take it the less effective it is, leading to higher and higher doeses until it becomes too dangerous to take it any longer. Then you have to switch to other things that might not be as effective. The other reason is due to the dangers to my liver. I realize he is protecting my liver at the cost of my other organs. I think that's why he moved my retesting up from August to next month. On that visit I will be requisting to be put on steriods, even if only for a month, to give me a break from my current symptoms. Also to go see a specialist will mean a 2 and half hour drive for me as the only one here isn't very good and he wants me to go to someone he feels will help me the most.
I've had this since I was 16. My knees would become so swollen and painful I couldn't walk some days, but my grandfather had the same problems so we just assumed I had what he had. Then I went into remission when I was about 20 and for the most part remained so until the last year. Then around Christmas I started to get much, much worse. It is only then that I went to a doctor. I knew whatever I had now needed to be treated. I've been in a downward spiral since then with new symptoms and pain every week to two weeks. When I first went to see my doc in January I only had fatigue and joint pain with swelling only in my knees, hips, and shoulders. He then did my blood work which came back with the borderline ANA results. He felt I was only in the early stages of lupus and was expecting it to take years to get where I am now. Since then I've now got swelling and pain in every joint except my wrists and ankles, heart problems, shortness of breath some days and the fatigue has gotten extreme. So in his defense there's no way he could have known given my blood work in January that I would be where I am now.
Sorry for the rambling, but that's where I was and where I am now :oops:
sick n tired
04-12-2008, 11:16 PM
Let me first welcome you and then tell you to "ramble on" We are here to listen and try to help one another.
I was diagnosed last September...it was by a my GP, too. I happened to go to a new gp and tell him some of my symptoms and he tested me for many things....the ana was one of the tests...he retested it again, too. After it came back high he put me on a 7 day prednisone treatment.
When I went to my Rheumy he called that a diagnostic procedure. I guess if I have gone in and said that it had not worked then it might mean that my ana was not from Lupus...at least that was my take.
I hope that you are one who gets answers sooner than later...it looks like you might...it is not as though you were not having things happening for years...
I don't have vasculitis...I hope that it is not too painful....
Well let us know how the last test comes out.