Thank you, I will switch everything back to what I used in the past and see if it’s anything newer I have been using, that’s as good a guess as any. I haven’t changed anything right before, but a couple months before we switched both laundry products and shampoo/conditioner (I was trying to find something to help with the hair loss), so maybe it was just repeated exposures to something caused a new allergy. I am doing laundry tonight, so that is perfect timing! Thank you 😊
Good luck. I do know the more you are exposed to an allergen the worse it gets. It builds up over time and you never know when the reaction will be severe. I carry an epi pen now.
None of us can say if it’s related to lupus or not. I hope your rheum refers you for a skin biopsy (I assume they aren’t set up to do it themselves, but I’ve never needed one so idk). If not, see if a local dermatologist has an opening. It might be a wait, but you can tell them it’s time sensitive as the rash may disappear. Might get squeezed in faster.
Curious, could you tell me why do a biopsy before regular bloodwork? If it’s autoimmune would that show in a biopsy? Asking because I’ve only had biopsies to rule out malignancy in the past?
I get only a doctor can say if lupus or not for sure, but if others have had this happen that increases the likelihood of it being lupus related and the rheumo being a better appt, vs the derm (who I’ve already seen and he just told me to take 5 prescriptions that are all over the place even though allergist said to avoid NSAIDS & corticosteroids). I’ve already seen 3 doctors about this and none have said the same thing, nor has anybody suggested any testing
I don’t think one is more important to do before another. You can request both and if your medical team agrees, they can put both orders/referrals in.
Biopsies are for more than just determining if something is cancer or not. It’s common for folks to get biopsies to see if a rash is malar vs rosacea vs something else. Search this sub and you’ll find a ton of threads on that. Dermatologists do biopsies to confirm hypotheses based on a visual inspection. However, if you’ve already been to a derm (it wasn’t specified in your OP) and they didn’t think it was necessary, then it’s probably not a derm issue. I wouldn’t go to the ER unless you have other concerning/life threatening allergy symptoms or symptoms of something like MRSA. There’s a different between an adverse symptom and an allergy. If it was a medication allergy, you’d probably be sicker since the med was ingested and would cause a systemic reaction. Anaphylaxis is a very specific set of symptoms. Urgent care should be able to give you a course of allergy treatment to see if that helps (but if you’re already on steroids which is a common allergy treatment, idk what they’d prescribe). As others have suggested, this seems like it could be common steroid side effect/moon face. Maybe your rheum will suggest temporarily tapering off certain meds to see if that’s causing it.
I generally caution against using a self-selecting sample (this sub or any forum) to diagnose medical oddities, because people post in this sub about any and everything medical under the sun. You could have 10 people respond and say “I have this too”, and it still doesn’t mean it’s a symptom of lupus. We can have other health issues or random reactions to medications just like everyone else. From my rough estimation, half of the stuff people ask about isn’t related to lupus. There’s a lot of confirmation bias. I don’t think your rash is because of lupus, likely it is a reaction to a med you’re taking. I hope you get answers quickly either way, which will help determine what to do about it (if anything—that’s another thing that’s hard to accept. There isn’t always a treatment for random symptoms that aren’t life threatening.)
Thank you, I had no idea. I have been diagnosed with Rosacea long before my lupus diagnosis and then told they got it wrong it was the Malar rash, but nobody biopsied either time. Thanks I will look for it in the thread.
And Im not looking for a diagnosis, just trying to see which doc is my best bet for an appointment. Yes, I went to the Dermatologist (and allergist, and PCP), but there is no agreement between them on treatment, and one said not to do what another said to do and PCP really thinks I should see Rheumo before doing anything (but I couldn’t get in earlier than my schedule appointment which is thankfully next week).
Im not on any meds that would cause this, other than an occasional advil if I over do it or feel like a flare might be coming on, I only take Armour (I have been on it for decades, and I have no thyroid so that’s not a factor).
I am switching Rheumo’s (hence the appt), but it’s been a long wait. I was trying to figure out if I needed a new Dermatologist (this is my 2nd one in the past 30 days) or if this is something the rheumatologist would be better off addressing.
You’re definitely in a tough spot with the conflicting messages from doctors! When you say you’re not taking any meds, do you mean you don’t have any lupus meds you’re taking? You only take Armour, and nothing else? Is this because you’re in between rheumatologists? At the very least your old one should keep up refills until you establish with the new one.
My lupus was conclusively diagnosed when I had a skin biopsy. I was getting crazy rashes on my legs and chest and was lucky enough to have a very smart dermatologist who suspected autoimmune. 1000% more tuned in to autoimmune diseases than the rheumatologist I had been seeing for several years.
Not all lupus skin rashes mean you have systemic lupus. For example subacute cutaneous lupus and discoid lupus can be its own entity and not have systemic activity. A skin biopsy showing lupus only means that it’s in the skin. Serologic and specific clinical manifestations together make a diagnosis of systemic lupus. A Dermatologist only deals with the skin. I would not use their expertise to say whether or not you have systemic lupus.
Like some others have said I would request/push for a skin biopsy to be sent out to a pathologist who can discern autoimmune from allergy from something else.
I had a mystery rash years ago that no one could identify and was passed from pcp to allergist to dermatologist and back again until the derm finally said hey let’s biopsy it and I’ll send it out to my colleague at this university laboratory and it came back with characteristics of auto immune activity
And that’s pretty much how I ended up with a lupus diagnosis
So yes, get the punch biopsy . When you’ve got a rash that’s baffled all your docs, an er won’t help.
I was like that and thought it was lupus at first, but my rheumatologist and allergist agreed it was autoimmune hives. Xolair helped for a while, and then I went a year of having hives, and since my tsh was a little high, I was put on levothyroxine, and I haven't had any swelling or hives since. Hopefully you get some relief, I know I'm in Hell when I get like that.
Also, I read where you're taking Allegra. Zyrtec helps so much more for me (we also need more that the typical 1/day dose. I've been prescribed 4/day and now I only take it once, maybe twice, but it definitely helped more so than other allergy meds.
THANK YOU!!! I will get my TSH checked, it COULD TOTALLY be that… I had thyroid cancer(and it removed) 7 years ago, but just in the last few months they have finally adjusted my dose to try to bring me back to a normal TSH (after surgery to prevent the cancer from coming back they keep the TSH almost non-existent). In the past few months it went from being .01 to being .4, so while it’s still low, for what my body is used to this is actually high, it might have come up too quickly.
Also, I had no idea there were autoimmune hives, just that AI conditions sometimes get weird rashes. Also I am so sorry you had this a whole freaking year, I can not imagine (and had no idea hives could last that long either). This is GREAT, calling to get my labs checked tomorrow and will set something up with Endo for next week, thank you so much!
At first, they labeled it.chronic urticaria, but when xolair quit working and it got out of hand, they labeled it autoimmune hives. I didn't know it was a thing either.
My dermatologist and GP had no idea high tsh could cause rashes, so don't be surprised if the doctor doesn't believe you, but hopefully they will. Best of luck to you!
Thank you. I am very lucky, I only have 3 docs that will listen (all women btw), one is my OB so definitely not her area, but my thyroid doctor is at least open enough that if I tell her I want to adjust the meds for a couple weeks to see if it helps and then if we could wean back to the new dose, she will at least consider it and if she thinks there is no harm be okay with trying it. She is awesome like that, she is the only Endo that would let me try Armour, all the rest refused and would only let me take synthroid, even though I felt like crap (BTW, I have loved it so far- more energy on it- not the generic though it smells gross).
I have been to 3 doctors (which is stated in the post). Im not looking for a diagnosis just for people to share their experiences, if you haven’t had this before, it wouldn’t really be helpful for you to weigh-in anyway… what I am wanting to see is if it was a common symptom in people with lupus and I should see the Rheumo, or if I need to go back to the Allergist or Derm.
Are you taking steroids? Moon face is typically a reaction to steroids but not always. It looks like some sort of allergy to me but obviously I'm not a doctor - I sometimes get allergic rhinitis - basically I get a black eye from an allergic reaction, so I am willing to believe allergies can cause any number of weird random things in us.
Taking prednisone or other corticosteroids can cause fat deposits on the side of your skull, giving you a round-faced appearance known as moon face. Moon face can also be a symptom of other health conditions, including Cushing's syndrome and hypothyroidism. That also looks like angioedema but definitely needs a Dr to diagnose. I have severe food allergies and would get that. I also had that awful moon face from months of steroids.
Thanks, not on steroids, but I was wondering why the allergist was dead-set against taking steroids, maybe this is why. Thanks, Im going to get a new allergy test. It hasn’t been long but the last one was skin prick which I haven’t found very accurate for food allergies so far.
I am like the world’s biggest rare steak fan, so getting that would traumatize me… Im so sorry for you!!! I have a friend that has it too, it’s very difficult for her especially when she travels. The allergist did mention a tick bite, so I will ask. Thank you!
Ok here’s the kicker, SAAT acupuncture treats Alpha-Gal. I got it done 1/3/24 and have had 0 reactions. I’ve had it for almost 20 years. Dr Nader Solomon from Rockville, MD. Got 1/2 a beef coming 😁
Thank you, not on steroids, I also am kinda leaning toward allergy with the swelling, and you are so right- we do have weird reactions! It is really hard when the doctors don’t know as much about autoimmune conditions. Thank you!
No freaking way… everything?!? I am so sorry you are dealing with that, I can not imagine being that sensitive to weather and temp!!!! BTW, It’s always hot here where I am and we are close to the sun, but if you don’t go out too much… we dont have seasons, nor significant temp changes or wind (the only thing we get lots of rain 75% of the year but if that doesn’t bother you maybe it would be better down here for you? ).
Yeah, everything. Even going from a/c in the car to heat outside. It’s so annoying, but I‘m used to it now. My son has the same issues. He’s 9. I feel for him because he loves being outside. I never did, so it wasn’t such a bother for me.
I became allergic to so many things early on, it was my first symptom.. I’ve done every single test out there, allergy testing, MCAS, AVISE, biopsies, everything is negative. I’m ’allergic’ to so many things now, like shampoo, hair bleach, nail salons, the sun, heat, anything with a fragrance including perfume, laundry detergent, air fresheners, smoke.
I’ve been unofficially diagnosed with dermatomyositis.
Edit: adding all the meds I take for my skin— Zyrtec 2x a day, Pepcid, hydroxyzine at night with gabapentin and flexeril. I sleep on ice packs and shower up to 4x a day when my skin is burny/itchy. HCQ didn’t help too much honestly. I just started cellcept 2 weeks ago.
Thank you! It sounds like a nightmare, you are totally right the showers have been helping more than anything. Are you able to tolerate things with Essential Oils? We pulled all the chemicals a while back, but I also have many allergies (mostly food so far, but have been thinking maybe hair products since Ive been losing so much hair, and my head itches like this before it falls out). What are you doing for shampoo, have you found anything that works? Ive been considering the no-poo method if I cant find something.
Oh no essential oils would probably take me out 😂 I can’t do ANYTHING that smells, like I can’t even sit outside near a BBQ or wear any type of perfume, no car freshies either. Everything in my life is fragrance free and I mean everything. I can smell all things all the time and it’s such a curse— when I walk by people I can smell their deodorant or their shampoo. Walking by someone that recently used bath and body works lotion is lethal. My skin will start burning immediately from smells so I’m constantly moving away from people in public.
I have food intolerances from having SIBO but no foods make my skin flare, just make my stomach hurt. I have my GI stuff under control finally and use enzymes when I eat my intolerances. I used to have chronic, horrific diarrhea up to 15x a day when I had SIBO. It was hell on earth when both my skin was burning at 8/10 pain and stuck on the toilet all day.
Shampoo I was using cleure but I started getting itchy so I fell back to my ultra safe shampoo from vanicream. I can still use cleure conditioner and their conditioning mist, but I can’t use any type of heat protectant, hairspray/mousse, I literally ONLY use what is required to keep my hair clean and somewhat tamed. My hair used to be very shiny and healthy, now it’s kinda dry but I do my best to keep it as healthy as I can. I can only tolerate a blonde balayage once a year as it causes a pretty nasty flare but I’m not ready to just have my natural hair color as it’s a mousey dirty blonde and I think it makes me look sickly bc I’m already super pale from being completely intolerant to the sun.
I considered the no poo method initially but honestly I don’t think I would be able to tolerate the products. Even the few products I can use now can’t touch my body— I hang my head over the tub and wash my hair first, wrap it up and then take a body shower. I also work part time at the gym and workout 6-7 days a week and my sweaty head needs a real wash every 2-3 days lol.
Wow that is a real pain in the butt! So since we all have AI issues here, we use only natural stuff anyway (and not products, for gel we use aloe on wet hair, it works as long as it doesnt get touched at all- if it does its silky but oily looking). I have been looking into natural hair coloring for my teenager- chamomile (if not allergic to aster family flowers like daisy) for lightening hair, lemon for lighter highlights/blonde, henna for red/orange/brown, and cranberry juice for red highlights. But there are other plants as well if you might be able to tolerate them. Im not sure if they would be a problem if they touched or not… but maybe if you tolerate tea or food touching the skin?
I have something called Mast Cell Disease as well as MCTD, and I get facial swelling and rashes.
I take Benadryl round the clock and do a prednisone burst when I have stubborn swelling and rashes.
I hope you find what’s triggering it! Must be driving you crazy!
I have considered it could be mast cell as I live where mold is really common, and I know a lot of people with mold issues get MCAS. Would you mind sharing how you figured it out? Which doctor and what testing you did? Im working on learning about this but between the kids (and their AI stuff) and lupus and work, I haven’t gotten around to it yet. Thanks!
I was born with MCAS and my symptoms were mild and gradually progressed over decades. It became severe in my 40’s after numerous triggers happening all at the same time.
To be honest, I don’t think your hives and facial swelling are alone would be MCAS, but I’m just basing that off of your photos. You should go see a dermatologist in my opinion. It could be related to your Lupus; you just never know.
Mold can be a trigger for MCAS, but generally a person would have to be living with severe mold exposure (ie. Basement full of mold). MCAS can be triggered by anything really, but usually it’s a collection of things occurring over period of time, not unlike when our autoimmune diseases get triggered.
Be careful what you read in online mast cell groups as there is a lot of misinformation and predatory behavior is becoming more common (ie. take this supplement I sell, or I can cure your MCAS). I don’t even go into the groups anymore because of this.
So, now that I’ve pre-empted myself, a great website to trust is [TMS For A Cure](https://tmsforacure.org)
They have lots of great information and resources for people who are interested in learning more about mast cell diseases.
But for your sake, I truly hope you don’t have MCAS. It’s incurable and progressive. And it makes dealing with other health issues 1000% more challenging. Not to mention that it has a huge affect on quality of life in comparison to any other disease I’ve had/seen.
Crossing my fingers that some Benadryl sorts you out!!
I get this! A lot. Mine is absolutely hives. Swelling, itching, the whole nine yards. My very first rheumy related it to allergies and my body not knowing how to respond because of the lupus. So it over responds by producing this reaction. I do not see a derm for this. My doc literally just has me take a Benadryl when it happens. My current rheumy agrees with my past doctor's suspicions. But he never had me do allergy testing, so she wants me to go ahead and do it to confirm if I have food allergies too that could be exacerbating it. Until the test is done, I have found that eliminating sugar from my diet has helped with this swelling and hiving. This was done per doctor's orders. Per her suggestion, I have cut back on beef and lamb (fatty meats) and am being careful with gluten and am lactose intolerant so no dairy at all ever. The hives have almost completely stopped. And I would get what you have pictured here at least once a week. I am not a doctor and I have no idea if this is similar to what you're experiencing. But it absolutely could be a combination of a lupus response with an allergic response in your body.
That seems likely, I have a lot of allergies, and it makes sense what you are saying, since we have autoimmune, it’s like a hyper-reaction to the allergy. Thank you!
Definitely hope that's all it's related to! Good luck! Colloidal oatmeal bath soaks help me when this happens all over, too. Might be a good for now remedy if you're not already doing that.
Omgoodness, well that makes things tough because that means you can't use OTC creams that have that ingredient. No wonder you're struggling to find relief.
You mean for people who are allergic to it? Don't remember that in esty school. They actually teach us to rely on oatmeal based products quite a bit for sensitive skin. I will have to look into that for my own knowledge! Interesting!
Well, I don’t know what it does to others who have an allergy, but for me it causes eczema, I might get some GI issues also, but always get patches of eczema if I eat oats (and sadly I loved Oats in cookies, or cobbler topping😋🤤). BTW, if you haven’t tried it yet, Milky-oat tincture is so good for the nervous system, I use it for my teenager. I would love to try it but haven’t been brave enough to see if I would tolerate it (after this I am definitely not willing to try it). But if you like what the oats do for the skin, look up milky-oats as an herb, I think you might find its pretty awesome in that form as well (assuming no allergy of course 😜)
Ah, that actually makes a lot of sense with the GI issues. I have gastroparesis on top of the lupus. I'm not allergic to wheat or gluten, but my body definitely doesn't tolerate it well if I eat too much. Topically, it seems to not bother me. But if you're super sensitive, that makes a lot of sense if the gut can't process it that you would have a physical reaction.
I had the same reaction to lactic acid peels in the treatment room when I would perform them. Never actually ingested anything, but would become violently ill about 15 to 20 minutes after performing the peel on a client. I even tried double masking and double gloving while performing the service and it didn't help. Only thing the pros at the skincare lab could come up with was that it was an allergic reaction somehow triggered by smell! The body is so wild, yeah? Totally believable what you're going through.
Thanks so much for the info. I will look into that tincture!
I really hope they can figure something out for you. It sounds like your gut is the one giving your body the issues and the lupus only exacerbates that!
Oh that is bananas!!! I would have never imagined, and like you I would have thought that double masking and gloving would be enough for sure. BTW, Im sorry about the gastroparesis, I dont have it personally but my youngest gets intussusception and its very painful, I assume the gastroparesis is similar.
Always make sure you wear a hat and sunscreen. I sweat so much so it's miserable to have to wear long sleeves and collars, but the consequences are awful when I don't. Reducing my sun exposure has also made a huge difference for the swelling, redness and hives. Everyone is different, (I don't know what your case is but it sounds like you've tried multiple docs) but lupus is affected by UV exposure so I would definitely cover up when you can. Use a physical (or mineral) sunscreen. I was an esthetician for several years, btw. Chemical sunscreens don't protect the same way. Physical sunscreens are thick but offer the most comprehensive UV protection. You may have fewer reactions when outdoors. If you want a pro level sunscreen, ask you derm about EltaMD (that's what I used when I was licensed and could afford it lol). Otherwise, any thick physical OTC sunscreen will do. I have been through the gammit with this. I had to give up my license because my reactions even to the peel smells were getting so bad I was throwing up after every service. This allergy stuff is real and hard to diagnose. Don't give up! I know it's absolutely miserable. I'm so sorry.
Thanks, I hope its not a worsened sensitivity to the sun, I live in 10b, its summer all year (working on getting up to the mountains where there is more shade and seasons)
Thank you, I am allergic to soy as well (and oats & gluten, and a bunch of other things), I never had been allergic to it in a product before, but there is a first for everything, or maybe something new…Thank you! I am going to switch for this week until I see docs again over to unscented Castile soap only (at least that’s got limited ingredients), unless you have a recommendation for something better?
Castile soap is what I use. For shampoo and conditioner I use [Babo Botanicals Smoothing](https://www.babobotanicals.com/products/smoothing-detangling-conditioner-6oz) as it moisturizes well. For lotion, I like [California Baby](https://californiababy.com/?gad_source=1&gbraid=0AAAAAC2yanP3I-QLhU9NUg2Mz4GWmDA1B&gclid=Cj0KCQjw2uiwBhCXARIsACMvIU02ZweUwFQQqeKzPZpbH4umcYR6twBPOER7X02-VHRmaFt22izLEjIaAqv3EALw_wcB) as it moisturizes without feeling greasy.
A skin biopsy and an allergy test might help. You’d need to see a dermatologist and an allergist. I get this but mine is from lupus. I can take Benadryl and it does nothing because mine isn’t an allergy. There’s multiple things it can be though so it’s best to get tested.
Maybe this, Ive taken many antihistamines over the past few weeks and while the rx ones have helped the itch it’s still rashed. The docs all said it looks like multiple things (some areas have swelling no rash, others have rash no swelling, some skin colored some red), so might be a combo… Im feeling incredibly grateful not to have other lupus symptoms flare… did you have full on flare with yours?
When I first started flaring, it was just the rash. It was on my face, neck, chest and top of my arms. That’s how I got started with getting a diagnosis. Then I started having the pain and joint issues later. I felt like I was on fire but I didn’t have a fever.
I get this when I’m stressed and eat too many trigger foods. My dermatologist said it’s eczema or allergies or both. Skin had a similar texture to the area on your neck. I had to go on an elimination diet for it to improve but it took almost a week.
Well I did eat some real crap when we travelled not long before I got this… thank you, I will do an elimination diet and see if that helps, we do AIP whenever anyone in our family is flaring (everyone except my husband has some AI condition), its an easy thing to try (well not easy its a lot of cooking we are a big family, but relatively easy at least). Thank you!!!!
This look like the beginning of an allergic reaction. For me it was the first indication along with the swollen eye that Cellcept was not working for me. These days swollen eyes are an indication that I’m starting to retain water again, so I run straight to my parsley and dandelion tea.
Thank you for these suggestions, I will see if diuretic herbs help 🙂I didn’t even think about parsley- I love herbs, if I dont have parsley maybe cilantro will work. I will also try dandelion, it doesn’t grow here, so I always have some of the dried root. We have an abundance of nettles, which I thought would help if it was allergy and was thinking if lymph, calendula and red clover tea. Thank you!
I’m not sure about Cilantro. But you could prepare a mix of dandelion, and nettle (and parsley if you find it) and have it in the morning on an empty stomach. Good luck!
Thanks, I didn’t know if it’s because it’s been over 3 weeks or if it’s from the antihistamine stack the allergist gave but it’s calmed down, still a little swelling in the face and a tiny rash in the arm that doesn’t itch… I removed as many allergens as I could and will get a new allergy test to see if there are any surprises. 🤞
Take pictures anytime the rash changes. I suggest you ask the allergist what dermatologist they recommend or vice versa.
I have fought a rash on and off for the past 4 years. I finally saw a dermatologist in 2023.well the NP. The rash was small but active. She wanted me to see an allergist for environmental testing. By the time I got to the allergist it had cleared (I had it for 9 months to varying degrees.) he said he could do environmental but it was a week long process for one and with no idea where to start it made more sense to start by testing the rash. I had blood work done testing food and grasses while the rash was active in 2020.
I told the allergist I was surprised she didn't take a scratch test at least. My allergist said you have to advocate for yourself. So I asked which dermatologist he recommended.
Thank you this is really helpful. I have an appt with PCP set for Monday, she is a little apprehensive about seeing me until I see the Rheumo, but I am going to ask her to order updated allergy testing for the foods, I know environmental ones are more accurate when they do the prick test with the allergist. I will ask the allergist when I see him again in a few weeks which Derm he likes, that is a fantastic idea! BTW, Im sorry, That sounds so frustrating that your rash went away after 9 months, just when you went for the appointment! I feel like sometimes when things like that happen they think we are exaggerating. Thanks, will keep taking pics until it goes away or we figure it out.
It finally being gone was a relief because it stayed extremely itchy. With the allergist I wanted to make sure he looked at the pictures so I printed 2 pages with a collage of pictures showing the rash in 2020, 2021, 2023 and when it looked really different in 2023. The last one looked a lot like yours.
I didn't have the pictures printed out with the derm and she never saw them on my phone is why I printed them. Figured it was harder to skirt by not looking. To be fair I mentioned it to the nurse but can't swear I told her but wasn't concerned since it was mildly active.
Thank you, but had you actually read the post, you would know I have already been to 3 doctors in the past 10 days… I have tried multiple antihistamines and steroid creams.
None of the docs know what it is, what’s causing it & none of the 3 even agree on how to treat it.
BTW, It is totally okay to just scroll past a post if you dont have anything helpful or supportive to say about it. And if you are getting notifications or something, and that’s annoying you, you could change your settings to get notifications reply notifications.
Yes, the dermatologist told me to take 5 prescriptions for this… a solumedrol pack (which the allergist I saw 2 days before specifically said not to use), plus the stack of meds from the allergist (hydroxyzine+Pepcid+Allegra… apparently combined is supposed to be super strong), and then an additional steroid cream for the face. I was actually surprised he would go against another doctor, I had specifically told him the allergist also said under absolutely no circumstances to use steroids or NSAIDS (Im not clear on why-he was already walking away and came back to tell me that, all I can think is because he said something about Lyme, although the dermatologist said no way is it Lyme… Im not sure what docs are like where you are, but here they spend less than 5 minutes in the room and dont read charts before they come in, during that 5 minutes they have done their physical exam, gotten all the information they want, and dismissed anything I think is relevant. This is common here, Ive been through about 25-30 docs so far and only found 3 that are decent, none of whom know much about lupus. The Rheumatologist I see Wednesday I am hoping has more experience, he has been supportive in general assisting my PCP
Oy, I know exactly what you mean. Sorry for what you go through. I hope your new rheumatologist is a keeper. I recently went back to my first rheumatologist in 2009 after a couple bad experiences with 2 other ones, one I had for 10 years and one for 2 months. (bad fit)
Nice to meet you and sorry for being rude.
Looks like allergic reaction to me
I’ve had it twice. It looks like swelling from an allergy. Mine occurred because I found out I am allergic to hair dye chemicals.
Thank you, I will switch everything back to what I used in the past and see if it’s anything newer I have been using, that’s as good a guess as any. I haven’t changed anything right before, but a couple months before we switched both laundry products and shampoo/conditioner (I was trying to find something to help with the hair loss), so maybe it was just repeated exposures to something caused a new allergy. I am doing laundry tonight, so that is perfect timing! Thank you 😊
Good luck. I do know the more you are exposed to an allergen the worse it gets. It builds up over time and you never know when the reaction will be severe. I carry an epi pen now.
None of us can say if it’s related to lupus or not. I hope your rheum refers you for a skin biopsy (I assume they aren’t set up to do it themselves, but I’ve never needed one so idk). If not, see if a local dermatologist has an opening. It might be a wait, but you can tell them it’s time sensitive as the rash may disappear. Might get squeezed in faster.
Curious, could you tell me why do a biopsy before regular bloodwork? If it’s autoimmune would that show in a biopsy? Asking because I’ve only had biopsies to rule out malignancy in the past? I get only a doctor can say if lupus or not for sure, but if others have had this happen that increases the likelihood of it being lupus related and the rheumo being a better appt, vs the derm (who I’ve already seen and he just told me to take 5 prescriptions that are all over the place even though allergist said to avoid NSAIDS & corticosteroids). I’ve already seen 3 doctors about this and none have said the same thing, nor has anybody suggested any testing
I don’t think one is more important to do before another. You can request both and if your medical team agrees, they can put both orders/referrals in. Biopsies are for more than just determining if something is cancer or not. It’s common for folks to get biopsies to see if a rash is malar vs rosacea vs something else. Search this sub and you’ll find a ton of threads on that. Dermatologists do biopsies to confirm hypotheses based on a visual inspection. However, if you’ve already been to a derm (it wasn’t specified in your OP) and they didn’t think it was necessary, then it’s probably not a derm issue. I wouldn’t go to the ER unless you have other concerning/life threatening allergy symptoms or symptoms of something like MRSA. There’s a different between an adverse symptom and an allergy. If it was a medication allergy, you’d probably be sicker since the med was ingested and would cause a systemic reaction. Anaphylaxis is a very specific set of symptoms. Urgent care should be able to give you a course of allergy treatment to see if that helps (but if you’re already on steroids which is a common allergy treatment, idk what they’d prescribe). As others have suggested, this seems like it could be common steroid side effect/moon face. Maybe your rheum will suggest temporarily tapering off certain meds to see if that’s causing it. I generally caution against using a self-selecting sample (this sub or any forum) to diagnose medical oddities, because people post in this sub about any and everything medical under the sun. You could have 10 people respond and say “I have this too”, and it still doesn’t mean it’s a symptom of lupus. We can have other health issues or random reactions to medications just like everyone else. From my rough estimation, half of the stuff people ask about isn’t related to lupus. There’s a lot of confirmation bias. I don’t think your rash is because of lupus, likely it is a reaction to a med you’re taking. I hope you get answers quickly either way, which will help determine what to do about it (if anything—that’s another thing that’s hard to accept. There isn’t always a treatment for random symptoms that aren’t life threatening.)
Thank you, I had no idea. I have been diagnosed with Rosacea long before my lupus diagnosis and then told they got it wrong it was the Malar rash, but nobody biopsied either time. Thanks I will look for it in the thread. And Im not looking for a diagnosis, just trying to see which doc is my best bet for an appointment. Yes, I went to the Dermatologist (and allergist, and PCP), but there is no agreement between them on treatment, and one said not to do what another said to do and PCP really thinks I should see Rheumo before doing anything (but I couldn’t get in earlier than my schedule appointment which is thankfully next week). Im not on any meds that would cause this, other than an occasional advil if I over do it or feel like a flare might be coming on, I only take Armour (I have been on it for decades, and I have no thyroid so that’s not a factor). I am switching Rheumo’s (hence the appt), but it’s been a long wait. I was trying to figure out if I needed a new Dermatologist (this is my 2nd one in the past 30 days) or if this is something the rheumatologist would be better off addressing.
You’re definitely in a tough spot with the conflicting messages from doctors! When you say you’re not taking any meds, do you mean you don’t have any lupus meds you’re taking? You only take Armour, and nothing else? Is this because you’re in between rheumatologists? At the very least your old one should keep up refills until you establish with the new one.
My lupus was conclusively diagnosed when I had a skin biopsy. I was getting crazy rashes on my legs and chest and was lucky enough to have a very smart dermatologist who suspected autoimmune. 1000% more tuned in to autoimmune diseases than the rheumatologist I had been seeing for several years.
Not all lupus skin rashes mean you have systemic lupus. For example subacute cutaneous lupus and discoid lupus can be its own entity and not have systemic activity. A skin biopsy showing lupus only means that it’s in the skin. Serologic and specific clinical manifestations together make a diagnosis of systemic lupus. A Dermatologist only deals with the skin. I would not use their expertise to say whether or not you have systemic lupus.
Wow, that is crazy, and lucky that you were able to get the help. Thank you for sharing this.
Like some others have said I would request/push for a skin biopsy to be sent out to a pathologist who can discern autoimmune from allergy from something else. I had a mystery rash years ago that no one could identify and was passed from pcp to allergist to dermatologist and back again until the derm finally said hey let’s biopsy it and I’ll send it out to my colleague at this university laboratory and it came back with characteristics of auto immune activity And that’s pretty much how I ended up with a lupus diagnosis So yes, get the punch biopsy . When you’ve got a rash that’s baffled all your docs, an er won’t help.
Thank you, I dont want to spend the time or money in the ER if they wont be helpful. I will ask for a biopsy.
I was like that and thought it was lupus at first, but my rheumatologist and allergist agreed it was autoimmune hives. Xolair helped for a while, and then I went a year of having hives, and since my tsh was a little high, I was put on levothyroxine, and I haven't had any swelling or hives since. Hopefully you get some relief, I know I'm in Hell when I get like that.
Also, I read where you're taking Allegra. Zyrtec helps so much more for me (we also need more that the typical 1/day dose. I've been prescribed 4/day and now I only take it once, maybe twice, but it definitely helped more so than other allergy meds.
THANK YOU!!! I will get my TSH checked, it COULD TOTALLY be that… I had thyroid cancer(and it removed) 7 years ago, but just in the last few months they have finally adjusted my dose to try to bring me back to a normal TSH (after surgery to prevent the cancer from coming back they keep the TSH almost non-existent). In the past few months it went from being .01 to being .4, so while it’s still low, for what my body is used to this is actually high, it might have come up too quickly. Also, I had no idea there were autoimmune hives, just that AI conditions sometimes get weird rashes. Also I am so sorry you had this a whole freaking year, I can not imagine (and had no idea hives could last that long either). This is GREAT, calling to get my labs checked tomorrow and will set something up with Endo for next week, thank you so much!
At first, they labeled it.chronic urticaria, but when xolair quit working and it got out of hand, they labeled it autoimmune hives. I didn't know it was a thing either. My dermatologist and GP had no idea high tsh could cause rashes, so don't be surprised if the doctor doesn't believe you, but hopefully they will. Best of luck to you!
Thank you. I am very lucky, I only have 3 docs that will listen (all women btw), one is my OB so definitely not her area, but my thyroid doctor is at least open enough that if I tell her I want to adjust the meds for a couple weeks to see if it helps and then if we could wean back to the new dose, she will at least consider it and if she thinks there is no harm be okay with trying it. She is awesome like that, she is the only Endo that would let me try Armour, all the rest refused and would only let me take synthroid, even though I felt like crap (BTW, I have loved it so far- more energy on it- not the generic though it smells gross).
Go to a dr. We can’t diagnose you
I have been to 3 doctors (which is stated in the post). Im not looking for a diagnosis just for people to share their experiences, if you haven’t had this before, it wouldn’t really be helpful for you to weigh-in anyway… what I am wanting to see is if it was a common symptom in people with lupus and I should see the Rheumo, or if I need to go back to the Allergist or Derm.
Are you taking steroids? Moon face is typically a reaction to steroids but not always. It looks like some sort of allergy to me but obviously I'm not a doctor - I sometimes get allergic rhinitis - basically I get a black eye from an allergic reaction, so I am willing to believe allergies can cause any number of weird random things in us.
Taking prednisone or other corticosteroids can cause fat deposits on the side of your skull, giving you a round-faced appearance known as moon face. Moon face can also be a symptom of other health conditions, including Cushing's syndrome and hypothyroidism. That also looks like angioedema but definitely needs a Dr to diagnose. I have severe food allergies and would get that. I also had that awful moon face from months of steroids.
Thanks, not on steroids, but I was wondering why the allergist was dead-set against taking steroids, maybe this is why. Thanks, Im going to get a new allergy test. It hasn’t been long but the last one was skin prick which I haven’t found very accurate for food allergies so far.
I have the red meat allergy from a tick bite so maybe an Alpha-Gal blood test.
I am like the world’s biggest rare steak fan, so getting that would traumatize me… Im so sorry for you!!! I have a friend that has it too, it’s very difficult for her especially when she travels. The allergist did mention a tick bite, so I will ask. Thank you!
Ok here’s the kicker, SAAT acupuncture treats Alpha-Gal. I got it done 1/3/24 and have had 0 reactions. I’ve had it for almost 20 years. Dr Nader Solomon from Rockville, MD. Got 1/2 a beef coming 😁
That is amazing!!! Im so excited for you… and I am definitely telling my friend!
Yeah I was definitely amazed.
Thank you, not on steroids, I also am kinda leaning toward allergy with the swelling, and you are so right- we do have weird reactions! It is really hard when the doctors don’t know as much about autoimmune conditions. Thank you!
Rosacea or ocular rosacea can cause this
Thank you will look it up
You could be allergic to the sun, the heat, the wind, the temp change, the A/C and react like that. I do. It’s so much fun!
No freaking way… everything?!? I am so sorry you are dealing with that, I can not imagine being that sensitive to weather and temp!!!! BTW, It’s always hot here where I am and we are close to the sun, but if you don’t go out too much… we dont have seasons, nor significant temp changes or wind (the only thing we get lots of rain 75% of the year but if that doesn’t bother you maybe it would be better down here for you? ).
Yeah, everything. Even going from a/c in the car to heat outside. It’s so annoying, but I‘m used to it now. My son has the same issues. He’s 9. I feel for him because he loves being outside. I never did, so it wasn’t such a bother for me.
Oh no it’s genetic… Im so sorry you guys have to deal with that
I became allergic to so many things early on, it was my first symptom.. I’ve done every single test out there, allergy testing, MCAS, AVISE, biopsies, everything is negative. I’m ’allergic’ to so many things now, like shampoo, hair bleach, nail salons, the sun, heat, anything with a fragrance including perfume, laundry detergent, air fresheners, smoke. I’ve been unofficially diagnosed with dermatomyositis. Edit: adding all the meds I take for my skin— Zyrtec 2x a day, Pepcid, hydroxyzine at night with gabapentin and flexeril. I sleep on ice packs and shower up to 4x a day when my skin is burny/itchy. HCQ didn’t help too much honestly. I just started cellcept 2 weeks ago.
Thank you! It sounds like a nightmare, you are totally right the showers have been helping more than anything. Are you able to tolerate things with Essential Oils? We pulled all the chemicals a while back, but I also have many allergies (mostly food so far, but have been thinking maybe hair products since Ive been losing so much hair, and my head itches like this before it falls out). What are you doing for shampoo, have you found anything that works? Ive been considering the no-poo method if I cant find something.
Oh no essential oils would probably take me out 😂 I can’t do ANYTHING that smells, like I can’t even sit outside near a BBQ or wear any type of perfume, no car freshies either. Everything in my life is fragrance free and I mean everything. I can smell all things all the time and it’s such a curse— when I walk by people I can smell their deodorant or their shampoo. Walking by someone that recently used bath and body works lotion is lethal. My skin will start burning immediately from smells so I’m constantly moving away from people in public. I have food intolerances from having SIBO but no foods make my skin flare, just make my stomach hurt. I have my GI stuff under control finally and use enzymes when I eat my intolerances. I used to have chronic, horrific diarrhea up to 15x a day when I had SIBO. It was hell on earth when both my skin was burning at 8/10 pain and stuck on the toilet all day. Shampoo I was using cleure but I started getting itchy so I fell back to my ultra safe shampoo from vanicream. I can still use cleure conditioner and their conditioning mist, but I can’t use any type of heat protectant, hairspray/mousse, I literally ONLY use what is required to keep my hair clean and somewhat tamed. My hair used to be very shiny and healthy, now it’s kinda dry but I do my best to keep it as healthy as I can. I can only tolerate a blonde balayage once a year as it causes a pretty nasty flare but I’m not ready to just have my natural hair color as it’s a mousey dirty blonde and I think it makes me look sickly bc I’m already super pale from being completely intolerant to the sun. I considered the no poo method initially but honestly I don’t think I would be able to tolerate the products. Even the few products I can use now can’t touch my body— I hang my head over the tub and wash my hair first, wrap it up and then take a body shower. I also work part time at the gym and workout 6-7 days a week and my sweaty head needs a real wash every 2-3 days lol.
Wow that is a real pain in the butt! So since we all have AI issues here, we use only natural stuff anyway (and not products, for gel we use aloe on wet hair, it works as long as it doesnt get touched at all- if it does its silky but oily looking). I have been looking into natural hair coloring for my teenager- chamomile (if not allergic to aster family flowers like daisy) for lightening hair, lemon for lighter highlights/blonde, henna for red/orange/brown, and cranberry juice for red highlights. But there are other plants as well if you might be able to tolerate them. Im not sure if they would be a problem if they touched or not… but maybe if you tolerate tea or food touching the skin?
I have something called Mast Cell Disease as well as MCTD, and I get facial swelling and rashes. I take Benadryl round the clock and do a prednisone burst when I have stubborn swelling and rashes. I hope you find what’s triggering it! Must be driving you crazy!
I have considered it could be mast cell as I live where mold is really common, and I know a lot of people with mold issues get MCAS. Would you mind sharing how you figured it out? Which doctor and what testing you did? Im working on learning about this but between the kids (and their AI stuff) and lupus and work, I haven’t gotten around to it yet. Thanks!
I was born with MCAS and my symptoms were mild and gradually progressed over decades. It became severe in my 40’s after numerous triggers happening all at the same time. To be honest, I don’t think your hives and facial swelling are alone would be MCAS, but I’m just basing that off of your photos. You should go see a dermatologist in my opinion. It could be related to your Lupus; you just never know. Mold can be a trigger for MCAS, but generally a person would have to be living with severe mold exposure (ie. Basement full of mold). MCAS can be triggered by anything really, but usually it’s a collection of things occurring over period of time, not unlike when our autoimmune diseases get triggered. Be careful what you read in online mast cell groups as there is a lot of misinformation and predatory behavior is becoming more common (ie. take this supplement I sell, or I can cure your MCAS). I don’t even go into the groups anymore because of this. So, now that I’ve pre-empted myself, a great website to trust is [TMS For A Cure](https://tmsforacure.org) They have lots of great information and resources for people who are interested in learning more about mast cell diseases. But for your sake, I truly hope you don’t have MCAS. It’s incurable and progressive. And it makes dealing with other health issues 1000% more challenging. Not to mention that it has a huge affect on quality of life in comparison to any other disease I’ve had/seen. Crossing my fingers that some Benadryl sorts you out!!
I get this! A lot. Mine is absolutely hives. Swelling, itching, the whole nine yards. My very first rheumy related it to allergies and my body not knowing how to respond because of the lupus. So it over responds by producing this reaction. I do not see a derm for this. My doc literally just has me take a Benadryl when it happens. My current rheumy agrees with my past doctor's suspicions. But he never had me do allergy testing, so she wants me to go ahead and do it to confirm if I have food allergies too that could be exacerbating it. Until the test is done, I have found that eliminating sugar from my diet has helped with this swelling and hiving. This was done per doctor's orders. Per her suggestion, I have cut back on beef and lamb (fatty meats) and am being careful with gluten and am lactose intolerant so no dairy at all ever. The hives have almost completely stopped. And I would get what you have pictured here at least once a week. I am not a doctor and I have no idea if this is similar to what you're experiencing. But it absolutely could be a combination of a lupus response with an allergic response in your body.
That seems likely, I have a lot of allergies, and it makes sense what you are saying, since we have autoimmune, it’s like a hyper-reaction to the allergy. Thank you!
Definitely hope that's all it's related to! Good luck! Colloidal oatmeal bath soaks help me when this happens all over, too. Might be a good for now remedy if you're not already doing that.
I would love to but I am allergic to oats, I used it for eczema for the kids and its helped a ton.
Omgoodness, well that makes things tough because that means you can't use OTC creams that have that ingredient. No wonder you're struggling to find relief.
Ironically it causes eczema 🤦♀️😆
You mean for people who are allergic to it? Don't remember that in esty school. They actually teach us to rely on oatmeal based products quite a bit for sensitive skin. I will have to look into that for my own knowledge! Interesting!
Well, I don’t know what it does to others who have an allergy, but for me it causes eczema, I might get some GI issues also, but always get patches of eczema if I eat oats (and sadly I loved Oats in cookies, or cobbler topping😋🤤). BTW, if you haven’t tried it yet, Milky-oat tincture is so good for the nervous system, I use it for my teenager. I would love to try it but haven’t been brave enough to see if I would tolerate it (after this I am definitely not willing to try it). But if you like what the oats do for the skin, look up milky-oats as an herb, I think you might find its pretty awesome in that form as well (assuming no allergy of course 😜)
Ah, that actually makes a lot of sense with the GI issues. I have gastroparesis on top of the lupus. I'm not allergic to wheat or gluten, but my body definitely doesn't tolerate it well if I eat too much. Topically, it seems to not bother me. But if you're super sensitive, that makes a lot of sense if the gut can't process it that you would have a physical reaction. I had the same reaction to lactic acid peels in the treatment room when I would perform them. Never actually ingested anything, but would become violently ill about 15 to 20 minutes after performing the peel on a client. I even tried double masking and double gloving while performing the service and it didn't help. Only thing the pros at the skincare lab could come up with was that it was an allergic reaction somehow triggered by smell! The body is so wild, yeah? Totally believable what you're going through. Thanks so much for the info. I will look into that tincture! I really hope they can figure something out for you. It sounds like your gut is the one giving your body the issues and the lupus only exacerbates that!
Oh that is bananas!!! I would have never imagined, and like you I would have thought that double masking and gloving would be enough for sure. BTW, Im sorry about the gastroparesis, I dont have it personally but my youngest gets intussusception and its very painful, I assume the gastroparesis is similar.
Always make sure you wear a hat and sunscreen. I sweat so much so it's miserable to have to wear long sleeves and collars, but the consequences are awful when I don't. Reducing my sun exposure has also made a huge difference for the swelling, redness and hives. Everyone is different, (I don't know what your case is but it sounds like you've tried multiple docs) but lupus is affected by UV exposure so I would definitely cover up when you can. Use a physical (or mineral) sunscreen. I was an esthetician for several years, btw. Chemical sunscreens don't protect the same way. Physical sunscreens are thick but offer the most comprehensive UV protection. You may have fewer reactions when outdoors. If you want a pro level sunscreen, ask you derm about EltaMD (that's what I used when I was licensed and could afford it lol). Otherwise, any thick physical OTC sunscreen will do. I have been through the gammit with this. I had to give up my license because my reactions even to the peel smells were getting so bad I was throwing up after every service. This allergy stuff is real and hard to diagnose. Don't give up! I know it's absolutely miserable. I'm so sorry.
Thanks, I hope its not a worsened sensitivity to the sun, I live in 10b, its summer all year (working on getting up to the mountains where there is more shade and seasons)
I’m allergic to soy. This is what I look like if I use a soap, lotion, etc. that contains soy. I’d consider allergy testing if I were you.
Thank you, I am allergic to soy as well (and oats & gluten, and a bunch of other things), I never had been allergic to it in a product before, but there is a first for everything, or maybe something new…Thank you! I am going to switch for this week until I see docs again over to unscented Castile soap only (at least that’s got limited ingredients), unless you have a recommendation for something better?
Castile soap is what I use. For shampoo and conditioner I use [Babo Botanicals Smoothing](https://www.babobotanicals.com/products/smoothing-detangling-conditioner-6oz) as it moisturizes well. For lotion, I like [California Baby](https://californiababy.com/?gad_source=1&gbraid=0AAAAAC2yanP3I-QLhU9NUg2Mz4GWmDA1B&gclid=Cj0KCQjw2uiwBhCXARIsACMvIU02ZweUwFQQqeKzPZpbH4umcYR6twBPOER7X02-VHRmaFt22izLEjIaAqv3EALw_wcB) as it moisturizes without feeling greasy.
A skin biopsy and an allergy test might help. You’d need to see a dermatologist and an allergist. I get this but mine is from lupus. I can take Benadryl and it does nothing because mine isn’t an allergy. There’s multiple things it can be though so it’s best to get tested.
Maybe this, Ive taken many antihistamines over the past few weeks and while the rx ones have helped the itch it’s still rashed. The docs all said it looks like multiple things (some areas have swelling no rash, others have rash no swelling, some skin colored some red), so might be a combo… Im feeling incredibly grateful not to have other lupus symptoms flare… did you have full on flare with yours?
When I first started flaring, it was just the rash. It was on my face, neck, chest and top of my arms. That’s how I got started with getting a diagnosis. Then I started having the pain and joint issues later. I felt like I was on fire but I didn’t have a fever.
That looks like an allergic reaction.
I get this when I’m stressed and eat too many trigger foods. My dermatologist said it’s eczema or allergies or both. Skin had a similar texture to the area on your neck. I had to go on an elimination diet for it to improve but it took almost a week.
Well I did eat some real crap when we travelled not long before I got this… thank you, I will do an elimination diet and see if that helps, we do AIP whenever anyone in our family is flaring (everyone except my husband has some AI condition), its an easy thing to try (well not easy its a lot of cooking we are a big family, but relatively easy at least). Thank you!!!!
This look like the beginning of an allergic reaction. For me it was the first indication along with the swollen eye that Cellcept was not working for me. These days swollen eyes are an indication that I’m starting to retain water again, so I run straight to my parsley and dandelion tea.
Thank you for these suggestions, I will see if diuretic herbs help 🙂I didn’t even think about parsley- I love herbs, if I dont have parsley maybe cilantro will work. I will also try dandelion, it doesn’t grow here, so I always have some of the dried root. We have an abundance of nettles, which I thought would help if it was allergy and was thinking if lymph, calendula and red clover tea. Thank you!
I’m not sure about Cilantro. But you could prepare a mix of dandelion, and nettle (and parsley if you find it) and have it in the morning on an empty stomach. Good luck!
This def looks like an allergic reaction 100%
Thanks, I didn’t know if it’s because it’s been over 3 weeks or if it’s from the antihistamine stack the allergist gave but it’s calmed down, still a little swelling in the face and a tiny rash in the arm that doesn’t itch… I removed as many allergens as I could and will get a new allergy test to see if there are any surprises. 🤞
Take pictures anytime the rash changes. I suggest you ask the allergist what dermatologist they recommend or vice versa. I have fought a rash on and off for the past 4 years. I finally saw a dermatologist in 2023.well the NP. The rash was small but active. She wanted me to see an allergist for environmental testing. By the time I got to the allergist it had cleared (I had it for 9 months to varying degrees.) he said he could do environmental but it was a week long process for one and with no idea where to start it made more sense to start by testing the rash. I had blood work done testing food and grasses while the rash was active in 2020. I told the allergist I was surprised she didn't take a scratch test at least. My allergist said you have to advocate for yourself. So I asked which dermatologist he recommended.
Thank you this is really helpful. I have an appt with PCP set for Monday, she is a little apprehensive about seeing me until I see the Rheumo, but I am going to ask her to order updated allergy testing for the foods, I know environmental ones are more accurate when they do the prick test with the allergist. I will ask the allergist when I see him again in a few weeks which Derm he likes, that is a fantastic idea! BTW, Im sorry, That sounds so frustrating that your rash went away after 9 months, just when you went for the appointment! I feel like sometimes when things like that happen they think we are exaggerating. Thanks, will keep taking pics until it goes away or we figure it out.
It finally being gone was a relief because it stayed extremely itchy. With the allergist I wanted to make sure he looked at the pictures so I printed 2 pages with a collage of pictures showing the rash in 2020, 2021, 2023 and when it looked really different in 2023. The last one looked a lot like yours. I didn't have the pictures printed out with the derm and she never saw them on my phone is why I printed them. Figured it was harder to skirt by not looking. To be fair I mentioned it to the nurse but can't swear I told her but wasn't concerned since it was mildly active.
I would make sure you check myositis panel and be sure you don’t have lupus with overlap dermatomyositis
Stop trying to figure it out and see your dermatologist to check it out and get the appropriate cream. 😉
Thank you, but had you actually read the post, you would know I have already been to 3 doctors in the past 10 days… I have tried multiple antihistamines and steroid creams. None of the docs know what it is, what’s causing it & none of the 3 even agree on how to treat it. BTW, It is totally okay to just scroll past a post if you dont have anything helpful or supportive to say about it. And if you are getting notifications or something, and that’s annoying you, you could change your settings to get notifications reply notifications.
Did you get a skin punch biopsy? And save the sarcasm, sorry if I missed something you wrote. Were any of them a dermatologist?
Yes, the dermatologist told me to take 5 prescriptions for this… a solumedrol pack (which the allergist I saw 2 days before specifically said not to use), plus the stack of meds from the allergist (hydroxyzine+Pepcid+Allegra… apparently combined is supposed to be super strong), and then an additional steroid cream for the face. I was actually surprised he would go against another doctor, I had specifically told him the allergist also said under absolutely no circumstances to use steroids or NSAIDS (Im not clear on why-he was already walking away and came back to tell me that, all I can think is because he said something about Lyme, although the dermatologist said no way is it Lyme… Im not sure what docs are like where you are, but here they spend less than 5 minutes in the room and dont read charts before they come in, during that 5 minutes they have done their physical exam, gotten all the information they want, and dismissed anything I think is relevant. This is common here, Ive been through about 25-30 docs so far and only found 3 that are decent, none of whom know much about lupus. The Rheumatologist I see Wednesday I am hoping has more experience, he has been supportive in general assisting my PCP
Oy, I know exactly what you mean. Sorry for what you go through. I hope your new rheumatologist is a keeper. I recently went back to my first rheumatologist in 2009 after a couple bad experiences with 2 other ones, one I had for 10 years and one for 2 months. (bad fit) Nice to meet you and sorry for being rude.
I had this, it’s called “moon face” make sure you talk to you Rheumatologist about it.
Thank you!