Question:
Dear Susan, Never heard that Lupies are to avoid antioxidants. It is just stressed over and over to avoid anything that will make your immune system more active. Even some "natural" herbal ingredients can cause a change in the immune system. Often I will get "itchy" and have a rash…..and not necessarily just on my face.* sigh* I take a low dose predisone daily, and that has seemed to help. When the rash is at it’s worst, the dermatologist starts me on oral medications. Even they do not always help. Sometimes it just has to run it’s course. That isn’t an answer you are looking for, but it might help you to tolerate things a bit better. Just knowing that the rash will be gone soon, helps. Do you wear makeup that contains sunscreen? Coupled with the other topical sunscreen, it seems to help me. Sometimes just having the sun on my skin thru the windshield will cause a crop of rashes. Hope your rash goes away soon…. barbtoo east tennessee
Response:
On 16 Dec 2001 00:19:42 GMT, oriolead…@aol.com (Oriole Adams) wrote: >The reason I’m so curious is that I’ve had a non-stop facial rash for over a >year….and when I get stressed (which is often, at work) I can literally >feeling it "burning" across my cheeks and nose.
how much time in front of the PC at work? What about lighting? (what kind). Is the PC monitor older or rather new? My old monitor leaked enough UV to make my face burn by the end of a 2-3 hr session. And at work, all the lights were uncovered fluorescents. it’s not just the sun that can do us in. In fact, the derm told me that they’re finding that those of us with autoimmune photosensitivity are generally made more ill/have more rash due to UVA exposure (UVB is that which causes most of the "sunburn" on normal folk). Since fluorescents are predominanty UVA you could be getting much more than you realize. >I’ve had strangers in the rest >room ask me if I had Roseacea. My rheumy looks at it and tells me "stay out of >the sun", but I *never* go out in the sun – I’ve been a life-long heat-hater, >and I hibernate in the Summer.
me too. You could even say I have Summer SAD (seasonal affective disorder). I LOVE the cloudy rainy days we’re having – but I miss the clear nights for astronomy. Still, I stay so much more comfortable inside and outside when it’s like this.
Response:
- Hide quoted text — Show quoted text -KCat wrote: > On 16 Dec 2001 00:19:42 GMT, oriolead…@aol.com (Oriole Adams) > wrote: > >The reason I’m so curious is that I’ve had a non-stop facial rash for over a > >year….and when I get stressed (which is often, at work) I can literally > >feeling it "burning" across my cheeks and nose. > how much time in front of the PC at work? What about lighting? (what > kind). Is the PC monitor older or rather new? > My old monitor leaked enough UV to make my face burn by the end of a > 2-3 hr session. And at work, all the lights were uncovered > fluorescents. it’s not just the sun that can do us in. In fact, the > derm told me that they’re finding that those of us with autoimmune > photosensitivity are generally made more ill/have more rash due to UVA > exposure (UVB is that which causes most of the "sunburn" on normal > folk). Since fluorescents are predominanty UVA you could be getting > much more than you realize.
Well ! You’ve solved a mystery for me. I worked for a computer company for 7 years and we all (but in latter years for some) had old monitors. In the last two years, my face and all upper exposed body (neck arms) reddened. I kept trying to move the monitor further away from me but then I couldn’t see it. In addition, my boss noticed and kicked up a fuss "it’s not the monitors, IAIYH" This was also around the time that I noticed a faint butterfly "shading" (remember that, because I used to put makeup on it to try to hide it). Can this stuff happen to those of us who have Hashi’s (autoimmune thyroid)? J
Response:
I come here often but never post. Well I do have a couple of questions now that maybe some of can help with. For the last year and a half the rash on my face has been horriable. My rheumy has different things with no success. Yesterday he sent me to the second skin doc. She is starting her treatment with sunblock every day(already doing that) and wants me to take beta carotene twice a day. FIRST question— I thought lupies aren’t suppose to take antioxidents, are we? SECOND question— She is going to talk to my rheumy about continuing different drugs or going with laser. Does anyone know anything about using laser? if so please let me know. Thanks SUSAN
Response:
DON’T LASER! You’ll have even worse scars – one of the people here had laser and regrets it every day. susan matthews <crazyka…@webtv.net> wrote in message
news:27408-3C1A990F-255@storefull-295.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> I come here often but never post. Well I do have a couple of questions > now that maybe some of can help with. For the last year and a half the > rash on my face has been horriable. My rheumy has different things with > no success. Yesterday he sent me to the second skin doc. She is starting > her treatment with sunblock every day(already doing that) and wants me > to take beta carotene twice a day. FIRST question— I thought lupies > aren’t suppose to take antioxidents, are we? SECOND question— She is > going to talk to my rheumy about continuing different drugs or going > with laser. Does anyone know anything about using laser? if so please > let me know. Thanks SUSAN
Response:
In article <9ventg$th…@delphi.ridgenet.net>, "J Rogow" <JRo…@ridgenet.net> writes: >DON’T LASER! You’ll have even worse scars – one of the >people here had laser and regrets it every day.
I triple that! I have not had it done, but I’ve seen the results on folks with different connective tissue diseases. I also doubt if insurance would cover it. Hang in there! Tracy "if you’re on thin ice you may as well dance…"
Response:
Hi Susan, I am sorry that I can’t help with your questions. I just wanted to welcome you and tell you that I hope you feel free to post more often. It is a good group. You may get more replies after the weekend. It is sometimes quiet around here until then. Sorry that you are having problems. Regards, BJ "susan matthews" <crazyka…@webtv.net> wrote in message
news:27408-3C1A990F-255@storefull-295.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> I come here often but never post. Well I do have a couple of questions > now that maybe some of can help with. For the last year and a half the > rash on my face has been horriable. My rheumy has different things with > no success. Yesterday he sent me to the second skin doc. She is starting > her treatment with sunblock every day(already doing that) and wants me > to take beta carotene twice a day. FIRST question— I thought lupies > aren’t suppose to take antioxidents, are we? SECOND question— She is > going to talk to my rheumy about continuing different drugs or going > with laser. Does anyone know anything about using laser? if so please > let me know. Thanks SUSAN
Response:
Tracy Blumenthal Zelman <keept…@aol.com> wrote in message news:20011215071926.07928.00000875@mb-fi.aol.com… > In article <9ventg$th…@delphi.ridgenet.net>, "J Rogow"
<JRo…@ridgenet.net> > writes: > >DON’T LASER! You’ll have even worse scars – one of the > >people here had laser and regrets it every day. > I triple that! I have not had it done, but I’ve seen the results on folks with > different connective tissue diseases. I also doubt if insurance would cover > it.
I hadn’t thought about the insurance angle – but the scarring is plain NOT worth it. And, I’m told, the skin around the scar will stretch and tear and make a worse mess. Have you tried herbal cremes? I use a lavendar and aloe one, it stings a wee bit, but helps a lot. Hi, Tracy – imagine meeting you here! Judith, under blue SoCal skies
Response:
I’ve never heard that Lupies aren’t supposed to take anti-oxidents. I know we aren’t supposed to take things that stimulate the immune system (echinacea, etc) When I was pregnant with my first child, I used to drink alot of orange juice (rich in beta carotene) and I ended up with orange fingers. It was quite amusing! Everytime I hear beta carotene it reminds me of my orange fingers. Is your lupus under control? Is it only the rash bothering you? I know plaquenil helps a lot of the lupus rashes. I’ve had microdermabrasion before and it didn’t aggravate my rash… but it’s a lot different than the laser you are talking about. My dr turned the machine down on the lowest setting and it was fine. Take care Nicole
Response:
Yes Nicole, I think you are right about the anti-oxidents. I don’t think I have anything about not taking them. It is things that might stimulate the immune system that are no, nos. BJ "Nicole H." <jnhighto…@XXXearthlink.net> wrote in message
news:VsNS7.4783$O7.443430@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> I’ve never heard that Lupies aren’t supposed to take anti-oxidents. I know > we aren’t supposed to take things that stimulate the immune system > (echinacea, etc) > When I was pregnant with my first child, I used to drink alot of orange > juice (rich in beta carotene) and I ended up with orange fingers. It was > quite amusing! Everytime I hear beta carotene it reminds me of my orange > fingers. > Is your lupus under control? Is it only the rash bothering you? I know > plaquenil helps a lot of the lupus rashes. > I’ve had microdermabrasion before and it didn’t aggravate my rash… but > it’s a lot different than the laser you are talking about. My dr turned the > machine down on the lowest setting and it was fine. > Take care > Nicole
Response:
>For the last year and a half the >rash on my face has been horriable.
Hope this doesn’t sound rude, but what do you mean by "horrible"? Could you describe it a bit? Does it burn/hurt? Is it just the appearance that’s bad? The reason I’m so curious is that I’ve had a non-stop facial rash for over a year….and when I get stressed (which is often, at work) I can literally feeling it "burning" across my cheeks and nose. I’ve had strangers in the rest room ask me if I had Roseacea. My rheumy looks at it and tells me "stay out of the sun", but I *never* go out in the sun – I’ve been a life-long heat-hater, and I hibernate in the Summer. So, anyway, keep us posted on your progress with the sunblock and all. Best of luck. ~ Like jewels in a crown The precious gems glittered in the Queen’s round metal hat.
Response:
bogarting Nicole’s response: On Sat, 15 Dec 2001 19:25:41 GMT, "Nicole H." <jnhighto…@XXXearthlink.net> wrote: >I’ve never heard that Lupies aren’t supposed to take anti-oxidents. I know >we aren’t supposed to take things that stimulate the immune system >(echinacea, etc)
anti-oxidants are thought to stimulate the immune system (hence the reason Vit. C has a major following – including my hubby). I do not understand the beta carotene at all! This is just a precursor to vitamin A and Vitamin A is known to increase photosensitivity even i healthy individuals. Note that Retinol and related products are some version of Vitamin A or it’s precursors – and most know that if you are using Retinol or Retin-A or any related products, you are supposed to use *more* sunblock. So I’m boggled as to why she would put you on beta carotene. Perhaps, she expects the "yellowing" to provide more protection from a systemic POV? perhaps there is something I dont’ know about how beta carotene works vs. Retinol. But I think you should look into it before agreeing to this treatment. >Is your lupus under control? Is it only the rash bothering you? I know >plaquenil helps a lot of the lupus rashes.
plaquenil helped mine somewhat – but as far as the face rash – only avoiding UV exposure has helped me. I hope your derm (speaking to Susan here) has explained (or that you already know) that it must be reapplied every two hours under normal conditions to remain effective. Also, apply it about 20 minutes before any exposure. I was recommended "Skinceuticals" 30 SPF cream. I like it a lot and for the first time in a long time I can spend more time running errands with much less irritation of the rash. Maybe it’s coincidence because I’m also in general doing better after exposures (less fatigue, etc.) But I don’t think so. the steroid creams of course have their limitations. Skinceuticals does not have any of the anti-oxidants in it that so many cosmetics have now (the new "wonder drugs" in cosmetics seem to be Vits. A, C & E – all of which can irritate the rash). Despite the perfume from the cosmetic I complained about in a previous thread – it is the first moisturizer I’ve ever used that didn’t make the rash worse. Do you wear protective clothing? A hat? A drape? All of these are important – sunblock alone is not usually enough for those of us that are very photosensitive and we can become more sensisitive with time. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
If you like this post and would like to receive updates from this blog, please subscribe our feed.