I just have another question. I have developed a new rash but I'm unsure as to if it's related/caused by lupus or if it's just some weird thing I've got going. I did find a picture of it on a dermatology website under SLE but it didn't have a name or description so I could research more about the characteristics of it, just a picture. It started when I was taking Septra but even though I've been off that for a while now it is still coming back daily. I always, always, always notice it after a shower (I must be allergic to water because that's one of the times my malar rash will become more prominent if it is present as well ). It is itchy, looks like welts, it's red and white and splotchy. It doesn't last long at all. I always get it on my chest but have also noticed it on my neck, face, arms, abdomen, and legs. So far, it seems to resolve within an hour or so of appearing but then I'll notice little places where it returns throughout the day. My chest however (where it is the worst and largest) seems to always be a bit splotchy looking. I have red and white dots inside my hands (also found a picture of this on under SLE on a dermatology website) and it looks a lot like that. I just wondered if anybody else had it or if it is Lupus related if you know what it's called so I can research a bit more about it. Anyway, thank you all!! Sorry to hear you've got the flu Vee, hope you're doing okay!!
The rash you describe after showering isn't quite like I've had, seen, or read about---maybe *somewhat*. It''s striking that it appears after showering. Do you use really hot water? Could it be a vascular reaction of some sort?
I get an itchy sensation after hot shower---but it's not welt-like. Ankles, in particular---which is an area cutaneous vasculitis LOVES. It just looks reddish and "vein-ish"---all those little tiny broken capillaries on my feet and ankles turn pinkish & purple and itch like the blazes.
Does your skin surface actually rise up? In circles like mosquito bites? Or in little bumps?
Hubby feels punk now, too, so we are spending a VERY quiet weekend. I'm supposed to go to my book group on Tuesday---and I haven't even STARTED the book. This should prove amusing!
Take extra good care, Shawnee, OK? Hope you are having a good weekend.
I'm not sure if you know that I have a rash like you describe on my chest and neck. I posted it before but you may have missed it. This was the big reason my Dr. went looking for something beside's the thyroid thing. She is the one who told me Lupus doesn't have to be a facial rash. The one on my arms, coupled with the chest and neck made her suspicious.
Mine can show only a little mottleing or it can be fire red. If something hurts or is swollen you can just look at me and know because the sides of my neck and the upper part of my chest will be fire red. Sometimes my chest is so red it shows through my shirt. Otherwise you can only see what may be exposed from a boat neck or v neck shirt.
Remember I said at the craft show I did people asked me how I had been scalded from the neck all down my arms? Mine doesn't itch or hurt or burn ever though so it may well be different from yours. Mine does often show up after a shower though.
Hope you are feeling well except for the rash.
May God Bless and Keep You
Have you browsed for rash pictures? It used to be a pasttime of mine , when I was still seeking a Dx, that is.
Look for "straight medical" sites, like dermatology depts., or electronic medicine websites. You may have to register: I remember several required that, but at no cost.
In both your shoes, I'd look for (1) SCLE. One version of the rash is annular (circles) BUT the other is psoriaform; and (2) tumid lupus.
Obviously, the rashlike appearance you both get may not even be lupus---but maybe there's something in some of the articles & photos that would give you grist for the mill, as they say---something to discuss with your rheumies or dermies.
Just a thought... Wishing you the best----always! from Vee
Actually that is exactly what I did when my Dr. suggested Lupus. Several things I found looked similar, but not quite, like the rashes I get. The stuff on my arms looks just like the scarring discoid rash though.
It is really difficult to tell on internet pictures though because the pictures don't all look the same depending on how many pixels you can read and how many pixels the pictures are. Also, they can look very different printed out.
Guess that's why it's best to see a Dr., preferably one who has some experience with this disease.
The mountains are really pretty but in our yards the trees are still green. We had our first frost this week but it wasn't a hard one. The fall flowers are still very beautifull.
Our daughter and her family were up today and we planted over 200 bulbs for next spring. We had some huge hedge roses that we had to pull out this summer. They were getting out of hand and the past few years when we trimmed them back they just got huge dead sections so we just pulled them up. We put in some dwarf burning bushes, a wegilia bush, and all those bulbs in the two front corners or the yard. Hopefully in the spring we will have a riot of color out there till the bushes leaf out. The bulbs were a mix of Daffodils, Dutch Iris, and Tulips ( many colors).
Hopefully, when the spring bulbs are done I will be able to put out some annuals and then some mums for fall. We'll see. I'm anxious for spring now just to see what comes up and what colors they are. We also dug up the gladiola and cala lily bulbs for winter. I love my flowers. I miss not having some on the table in the winter months.
Hope you are having a good weekend. I began the Bextra yesterday that my Dr. prescribed. Hope that helps with some of this pain until I see the Rheumie.
Thank you friends!
Vee, it is interesting that you mention a possible venous type reaction as I've been wondering the same thing myself. I do get this rash other times but it isn't as itchy and splotchy looking and is more unpredictable as to when it comes and goes. But when I shower it is there every time. I actually avoid hot hot showers because I've had a lot of itchy skin problems (especially feet and ankles) with hot water since the summer. However, now that I'm paying more attention, my chest is always red like it's sunburnt or something even though I avoided the sun like the plague all summer long and didn't get sunburned once since March 2004 on my arms. So I guess this is just one more thing on my symptom list to bring up with my soon upcoming appointment in SLC (I can't believe it's so soon now!!). Hope you guys are both hanging in there and doing okay!! HOpe the flu has passed you by now and you're on your way to recovery Vee. If you find anything more about your rash Bonnie, will you let me know. Like I said, I did find pictures on reputable dermatology atlas type sites under SLE and this splotchy looking red and white rash is pictured but I can't find a name to look up characteristics or anything. By the way too, while I'm asking about rashes. The red and white dotted palms of hands and soles of feet, is this considered a rash?? Well, you all take care now!! Have a good day!
To tell you both the truth, I think I'm just going to stop researching for a while until I see this Rheumie and hear what he has to say. I do get the white polka *** thing on my hands and thighs but I have always gotten this and never gave a though to it being unusual. At the moment I am even doubting if I could possibly have Lupus. I have had individual episodes all thoughout my life that would indicate SLE when they are all looked at together. However, I understand that if you have the discoid Lupus, you get that first and it can bridge over to DSCLE. I did not get the discoid rash until my third pregnancy so I could not possibly have had Lupus before then. If that is the case, what were all those episodes when I was a teen and early 20 years.
So you both see, I am very confused. At this point I think I will just make copies of my records, do a writing and print out of my medical history and of episodes of strange things that have occurred during all my life that I can remember. Then wait 3 more weeks and see what the Rheumie has to say.
I can tell you that this bextra is wonderful. Has almost all the inflamation and pain gone and I feel human again. Wishing you would both feel as good as I do today. Not even going to think about tomorrow.
First off I must tell you I love your name. I crochet a lot too and wish I had thought of it. Most of what I make is angels, snowmen, and snowflakes. I work primarily with knit-cro-sheen.
I don't know if the spots I get on the palms of my hands are lupus related or not. I have seen them off and on for as long as I can remember. They look like white polka dots surrounded by pink or purplish outline. They are very close together. The one I get on my thighs looks more like a honey comb but the coloring is the same. My arms are completely different and the small discs there look like scars. My arms are rough to tough.
My neck and chest look like a combination of both the rashes. I wish I could show you a picture but I don't really know how to do that and get it here. I have seen some good pictures on the lupus foundation web site that very much resembles some of mine.
I will see a Rheumie for the first time on Nov. 4th. My family Dr. feels certain that it is Lupus but says the definitive diagnosis must come from a Rheumie. Hope for more information when I see Rheumie. At least I hope he can tell me for certain that this is or is not Lupus. Truthfully, I'm not sure what to hope for. If it is Lupus, I have had it for a long time and it has not caused much trouble until now. Now however, it seems to be advancing and symptoms are multiplying so I would really like to know.
I don't really think this helps you much. Go to the Lupus or a Dermatology web sites and search for rashes. Perhaps you can find some pictures that will give you answers.
You know I have been thinking about sending for some of those lights that say is just like natural sunlight and helps one to see better at night. Now I wonder if I should? We use reveal light bulbs sometimes but our floor lamps shine up towards the ceiling and then out so I am never in a direct line of light. This may be another question to ask Rheumie if he says this is lupus.
Yes!!! That is exactly what my legs look like! Could very well be related??
I know what light you are talking about!! I almost bought one! I was thinking for crocheting it would be great, but . . . maybe not so!? I am glad you mentioned that because I didn't even consider that. Well, you saved us both money!
I love crocheting! When my hands went completely numb 2 weekends ago, I cried the entire weekend, no kidding. I couldn't handle it. I felt like I was turning completely paralyzed. 2 shots of cortisone helped a lot, but not perfect. I think I need one more set of shots to help the rest of the way. Still also my cuticles are soooo swollen, I just about don't have them. They are way red, and are turning in onto the nails. I had to clip my nails because they were starting to grow into the finger skin because they were so swollen.
I am crocheting a half-double crochet stitch with a Q hook afghan right now. I found some Chenille Sensations yarn on clearance for $1.99 a skein, and have always wanted a chenille afghan, but it is to expensive to make them! I took advantage of the sale! I usually crochet lots of doilies, my favorite! I also just got out a snowflake pattern, too! And I just started an angel! I usually use DMC, but have gotten hooked on Aunt Lydia's huge ball!
Oh yes, for my victorian white angels I use the Aunt Lydia's too. The big ball is so econimical. I have found some special sparkle thread in the one catalog I get too that looks fantastic for angels. The victorian look has been here for a few years again and I think we are about to enter a more glittery and modern year so I got this for next years styles.
I love the chenile yarn too. Made myself a lap and shoulder cover for winter with some last year. Only did one for myself though because of the cost.
I have only experienced some tingling in my hands and feet so far. They have never gone completely numb on me. As I said, I think either I have a mild form or it has not progressed past the early stages. It has been more reactive lately so who knows what is in the future. I am working on quilts for our grandchildren. When I read that I could lose sensation as a result of this disease I felt the need to make them each one while I can. I had already done some for the two oldest and there are 4 more who would be hurt if they didn't get something too. The one I am doing now is for grandchild #4 so when this one is complete I will only have 2 to go. I plan to do those next year, one in spring and one in fall. Once they are finished I can feel better about what may happen, maybe. I would miss not creating angels though. It strokes my self esteem, or ego if you wish to call it that, to be able to create things other people enjoy and wish to have.
My sister-in-law has MS and has lost all sensation in her hands too. She is embarrassed at having to have her meat cut for her when we all go out to eat and she doesn't type on the computer at all anymore. She is the one who told me that it can happen with Lupus too. These diseases are such insidious things. They spare nothing.
I trust that God will give me strength, both emotionally and physically, to face whatever I must but sometimes I feel so weak and afraid. I have been blessed beyond all I deserve for the most part so I must try not to whine. I will keep making angels as long as I can and look forward to talking to people in the same shoes on these boards. Now we have each other and can share crochet stories too. They are not nearly as depressing as Lupus stories. Take care and feel good.