So my saga continues . . . Went to my derm today. He's absolutely convinced I have Lupus eryhtmotisis (or how ever you say it, it's the Lupus with an e name after it). Is that the skin Lupus? He wants me to start on Planquenil, but first wants to confirm his findings with a skin biopsy. I was hoping to avoid this because it sounds really painful. How painful is it? He told me to make sure I have a rash before I go so they can biopsy the rash. Anyways, getting closer. This sure is a toughy to diagnose. I'm waiting right now on my C3 and C4 results. Hope everyone is well. I really appreciate all your guidance. It's made it much easier for me.
Lupus rashes can occur in ALL the major groups/types of lupus. Here are the three most common rashes/groups. However, there is some overlap, meaning rashes cross the subsets sometimes. (I'm a good example: had 8 years of SCLE annular rashes on my torso---then one "discoid" lesion way late in the game.)
SLE = systemic lupus: mostly the "malar" or butterfly rash
SCLE = subacute cutaneous lupus: mostly either an SCLE annular rash OR a psoriaform rash
DLE = discoid lupus: mostly the "discoid" scarring/depigmenting rash
My biopsies required 5 stitches each. When the numbing agent wore off, they hurt some, nothing to write home about. Took Advil and stopped power lifting. (JOKE!!!!!!)
Don't worry about the skin biopsies, they aren't worth your worry, truly. If a biopsy gives you answers & help, then worth every second, right? Let us know how you are doing, OK? Vee
Hi Katie, I am due to have skin biopsy done this tues, Jan 11. My arms are not red like they were this summer and the Rheumie has no idea if anything will show or not but I do have small scarring discs all over my arms and some really dark patches on my legs and other body parts he wants the Dermi to tell him what they are. He thinks the spots on my legs are small hemorages from broken blood vessels just under the skin but he needs a dermi to tell him this. I never cease to be amazed by how they all keep each other in business. Seems to me if the Rheumie treats all Lupus he should be able to diagnose all Lupus, even discoid, but then what do I know. I'm sorry to sound so angry but all this running to different Dr.s frustrates me.
Rheumie has told me he is not sure if anything will show or not since my arms aren't red at the moment. The shame of it is I was red all spring and summer and they get me in to see a Dermi when, Jan. Go figure. I'll stop now. It seems I'm going to have an attitude today so I should probably keep it to myself.
Hang in there! I know YOU know you're doing all that you can & may have to do a little more. It's frustrating. I too wish you could have been seen by a dermie when your rash was peaking---but it cannot hurt to get started---the basic history, etc. done.
By the way, I was told, too, that "junk" can show up under the dermal layer even when your rash doesn't look active to the naked eye.
Hope you are able to learn more from your upcoming dermie appt.! Always, Vee (iced in here, but have small dog keeping me warm )
Patience, I am totally with you. If you've read my threads you see that this diagnosis process has been a very tramatic experience. I am currently working with a family doctor, two derms (one, a real jerk was supposed to specialize in hairloss), two rheumies (one basically told me that I am totally fine without examining me, so I am getting a second opinion), and now I am going to a third derm to do the skin biopsy. Like I have time for any of this stuff! So I am totally with you. I know it can be fusterating, and I too feel that when I get a rash most of the time it goes away by the time I get to a dcotor. Now I have been taking pics with my camera to record all of this. Anyways hang in there. We're in this together! Let me know how it goes! Kathie
I saw your storm on the weather channel. It went north of us so all we got is some rain. It didn't even dip below freezing last night and it is going to the 40s to today as I understand.
I hope you are right about them being able to tell from the scars and little hard bumps of junk I seem to always have on my arms. That would be nice.
I want to tell U what happened in Philly too because I know you will think it's as funny as I did. Perhaps I should post it on a separate thread so others would get a chuckle too. Phila******a has a couple of historic spots that have airport like security clearences. Dr. recommended that I wear these stretch knee braces with supports on the sides if I am going to be on my feet a long time. I must say, those braces are probably the only thing that kept me on my feet. Anyway, they set off the metal detectors; bells and whistles like you wouldn't believe. Strollers didn't set them off like I did.
When the security officer scanned me with one of those wands both my knees set it off. He patted me down and still wasn't convinced so I had to roll up my pant legs to show him the slide on braces. Can U just imagine the sight that made; overweight, middle aged, woman bending over at the waist flashing veiny ankles, spotty legs and bad knees. He even made me sit on a chair and remove one of the knee supports to examine it.
When he was all finished he told me it was a good thing I had stretch pants on otherwise I might have wound up dropping them instead of rolling them up. I just couldn't help it. I broke up laughing and so did everyone around us. It was just too funny to think of it.
As crowded as the liberty bell was and as impatient as people seemed to be, I think everyone around me had a great laugh that day. It was an experience. Hope you are feeling well.
My appt, is Tues., Jan 11. This dermi is suppose to take pieces of both arms, my neck, and one of both legs. I really don't see the need to take from both arms and legs since they look the same but that is the Rheumie's request.
Wed, Jan 12 I go to the dentist. I should be as uncomfortable as a bear with a sore bottom till it's all over.
I'm trying to get all my end of year paperwork done for the little angel business. I went to the local shops today and took inventory and put on my Jan clearances. Between that and trying to help our daughter when she needs it I am tired a lot of the time but not exhausted if that makes sense. I do sleep good at night when my legs don't pound and throb. I have even managed to drop 2 more lbs. Considering my current bulk I don't think that will hurt me. So far I have dropped 16 lbs. in just over 7 months so I don't think I'm losing too fast. Even the small drop will help my joints I think. I still feel half way nauseas some of the time, not out right sick, just as if I could be sick without much effort if you know what I mean. It's been going on for months now and I find it annoying.
All in all, I think I am holding pretty good for about 10 weeks now. It would be nice if I could go back to 15 months ago when my body really began to betray me but I suppose it could be worse. So far there have only been the 2 episodes where anything could have been life threatening and they were both caught before they got bad so I must count my blessing not my kvetches.
How have you been? Did you have nice holidays with those you love? I hope so. Hope you are feeling well.
Hi all, I'm new to the site. I was recently dx with Lupus (Nov.04) and am starting my journey to learn about this disease. I've had many bx's in my time for mole removal and skin cancer - they have never been painful just a little sting (like when they stick you for blood) and then the doc will numb the area. I've never felt the actual procedure because I'm numbed up - but when there were stitches involved I felt a little ache but nothing a simple Tylenol won't relieve. The ones without stitches were a breeze. I've never had a bx for the Lupus rash though - I have an appointment on Jan.18th to have mine taken care of so I can't comment on that but I can't imagine it would be any different. Just a side note - because of my skin cancer I was introduced to a WONDERFUL line of clothing called Sun Precautions or Solumbra. The clothing has SPF protection and comes in a wide range of styles. Just wanted to pass that along since I know those of us with Lupus can be sensitive to the sun, plus as a skin cancer survivor I'm a strong advocate of protecting yourself. Take care out there!
You really have been double-whammied with skin issues (skin cancer & lupus). After Dx, I started wearing double protection on my face, a moisturizer with 30+ SPF, then foundation with 15 over it. Can't hurt, I figure---not to mention all the other covering up I do... I also have some hats of special fabric, the kind you suggest.
I hope you've done better since your Nov. Dx of lupus. I was relieved when I finally got the word, and I gotta say Plaquenil has reduced my scope & severity of problems. I hope for yourself you're finding something akin. Take good care, from Vee
Any info on allergy free skin protectant. After I had mono and developed severe skin allergies, I stopped wearing sun protectant because they further irritated my skin. I even tried the clinique line, but that is really expensive and didn't work as well as I would expect. So if anyone has any suggestions I am all ears! Thanks, Kathie
Thanks for your thoughts. I am doing much better since I first started my journey. I'm on Prednisone currently which my Rheumy is weaning me off of and switching me to Plaquenil/200mg. I've read from others that this drug has been helpful to them as well and I haven't heard them complain of any side effects. Just taking it day by day with a positive attitude.
Guess I should have attached this to my last message to VeeJ - still learning the ropes of message boards. I'm not sure about how well this works for skin allergies, but I have sensitive skin and I use Purpose Lotion it is SPF15 and then Neutrogina foundation and it has SPF20 - both have worked well for me. I also used Clinique without any problems but yes it is expensive and now that I'm a stay at home Mom I need to find cost saving alternatives. If I'm going to be out for a long time in the sun I use Neutrogina sunscreen for Sensitive Skin and I think it is SPF30. Good luck.