Weird Rash Help :(

[apexx]

Hi (again) everybody,

I just want to give a big thank you to those of you who frequent this forum and answer questions and give words of wisdom. I really do appreciate you all.

I have just in the past couple of hours, developed a rash on my knee caps. I'm sure it's nothing, but I just really need some thoughts or ideas, before I freak myself out too much! This rash is very bright red and right on the tops of both knees. From afar, it almost looks like I've been sitting or resting on my knees, but I haven't, and it's quite to red and long lasting for that to even be the case. It really looks much more red and much darker in person, camera didn't capture it very well. Anyone have anything like this? Or perhaps seen anything like this? Thanks in advance for any help; I'd love to stop worrying!

[1985mum]

Is it itchy and hot? I had this itchy hot bumpy rash ( bumps all run together) in exactly the same spot as that. Came and went for about 3 years and then it moved to my elbows and has been coming and going there for about 2 years now along with the onset of a million other symptoms! I haven't got a diagnosis yet so am not much help with what it could be or how to fix it. Will be following this post with interest.

[apexx in reply to 1985mum]

Thanks for your reply, 1985mum! It's not particularly itchy (I would probably describe it more as painful, though not painful enough to bother me too much), and it seems more solid red than bumpy. Honestly, it's somewhat hard to determine what part is just my knees and what part is part of the rash, as I do have some strange bumps around my knees already. I appreciate you sharing your experience a lot, even if you don't know how/why this happens, just knowing someone else possibly has the same thing, makes me feel a bunch better!

[EOLHPC]

Good question. If this rash lasts, I hope you'll see if you can take close ups too.

I know what you mean: my rashes look much redder "in person" 😉.

My version of this rash appears on my knees in exactly the position yours has, + across the top of my feet (over the arches) + on my shins. My medics have diagnosed these as Vasculitic rashes. My version doesn't itch, it just hurts in a pinching sore prickly way. And it lingers for several weeks. My rashes appear slightly raised, slightly rough & bullous, but the blisters are minute.

The treatment I'm prescribed is the steroid ointment betnovate at 2 different strength (usually the stronger version works best). I usually get this type of rash in warm ambient temperatures but no sun exposure is necessary). I always take lots of pics of these sort of symptoms

Hope you'll let us know what your doctors say

🍀🍀🍀🍀 coco

[apexx in reply to EOLHPC]

Thank you, coco! You always leave such wonderful replies <3 The rash seems to be mostly gone now, I can still see a faint redness there and a few very very tiny bumps, almost pimple like blisters, but after about 24 hours, it seems to have gone down almost completely, which I am very thankful for! I did try to take close ups but for some reason, my phone camera wouldn't focus. I have an iphone 6plus and i expected better, honestly! hahah

Thank you so much for sharing about your rash! It sounds basically the exact same as mine! I was very happy to read your description as it matched so closely, but I'm obviously not happy that this is another thing you have to deal with! I also noticed that it was on the top of my right foot as well, in a much smaller splotch, which I at first thought I must have injured myself without remembering but it became very clear it was part of the rash. Mine also felt very mildly painful in a very strange way that's a bit difficult to describe. You've already said it better than I could, honestly. I have added the pictures of this new rash to my folder of pictures to show my doctor - I definitely would like to address this one very soon & I will certainly be back to share whether or not I got any answers!

Thanks again! (also, yes! why do rashes always end up being so much redder in person than they do on camera? drives me a little crazy lol!)

[EOLHPC in reply to apexx]

Good news: am glad the rash seems to be waning...👍👍👍👍

😆 good to know this about iphone6 plus 😤: had been on the verge of getting one (am still in the Stone Age: have a pink flip top mobile 🙄

Re the rash: have any of your medics mentioned that your version of lupus seems to be a vascular type? I'd ask about this when you discuss your rash pics...and another thing: your legs look so pale, long & slender l'm wondering about EDS (ehlers danlos syndrome - a type of hypermobility that can particularly affect the vascular system) - 😌apologies if you've mentioned hypermobility before

😜 Back in the '80s & '90s I had to be interested in this sort of colour discrepancy thing cause a large part of my career involved taking photos of flowers for marketing purposes...which was a nightmare using the equipment we had back then cause the cameras & films tended to pick up colours tones differently from the human eye, eg the pink tones in blue flowers was often exaggerated, making the blooms look more like lavender than blue. So, I figure something like this messes with our rash pics...but now I've spent 5 years trying to take decent pics of visual symptoms, I tend to have a go photographing the same thing in various types of light....usually I do get something that's fairly true 😉

🍀🍀🍀🍀

[apexx in reply to EOLHPC]

You've given me quite a bit to think about, coco! I thank you so much for your always wonderful and thorough responses. They are immensely helpful! Unfortunately, I've been unable to make it into the doctor for an official visit/diagnosis (it's been a very long time since I've been in). The closest I've gotten is being seen by doctors on the side, in a more unofficial manner - which has certainly helped point me in the right direction, for now, but I must take everything with a grain of salt. I'm going to make a note of what you've pointed out about EDS and possible vascular-leaning lupus. I'm very curious to find out what my doctor thinks of this - it certainly makes sense to me! And about my legs; another case of the abnormal becoming normal - I realize that I look quite different than most people my age, but somehow, I've still normalized it! And I'm sure I look quite sickly to them/everyone else hahah I am hopefully getting into the rheumy soon and will be sure to post with whatever answers I receive

About the iphone 6plus - it is a fantastic phone! I would certainly recommend it. I imagine it'll be such a nice upgrade for you! The camera is fantastic, though, like I said, I struggle with macro shots with mine. I'm not sure if that's just a me problem, though, as I've seen others get great results. Very, very interesting about the flower photography by the way! I am a digital artist and I work mostly in photomanipulation (w/photoshop), so photography and accurate colors are very important to me/what I do! I certainly think you're on to something with the color differences though. Hopefully some day there will be a camera phone with accurate color for us! As always, thank you for your wonderful replies and help. It means a lot to me <3

[EOLHPC in reply to apexx]

Thanks so much for this GRRREAT reply apex👍👍👍👍 am so glad you're here...and your kind words mean a lot to me 🤗...am looking forward to your next update! 🍀😘🍀😘

[jlat]

I have exact same rash and I have Hypo and Sjrogens,no treatment for either as yet,and have also a million other symptoms, the rash comes and goes and I have it also inside elbows, feet sometimes neck and sometimes random other places ,usually warm to touch but not always and sometimes itchy sometimes prickly ,don't have any blisters or pustules ,couldn't believe my eyes when I saw your pics the same. What are your other symptoms?

[apexx in reply to jlat]

Thanks for your reply, jlat! So happy to hear I'm not alone in this! I haven't been diagnosed with anything yet, as healthcare is such a mess and I haven't been able to get into a doctor in the past few years - praying I can be seen soon though! As for my other symptoms, there's quite a list. I suppose the main things would be:

extreme joint pain in all over

fatigue

weight loss

rashes (regular recurring face rash + this new rash + other assorted rashes which occur less frequently)

GI issues (nausea, pain, discomfort, infection, etc) & extremely irregular and painful menstrual cycles

headaches

photosensitivity

brain fog

oral ulcers, skin pain, strange things with my fingernails (which I detailed in my last post), & all kinds of infections (kidney, uti, yeast, bacterial, pancreas, etc) many of which are extremely difficult/basically impossible to get rid of

That is the bare basics of it. I hope you're able to receive some treatment for your Sjrogens and Hypo (can I ask specifically what you mean by hypo? I'm unfamiliar with a lot of terms )

[jlat in reply to apexx]

Hi Hypo just short for Hypothyroid I have lots of your symptoms too

[littleeffie]

Yep get it just like that!

I've never asked rheumy as got so used to knees going between the red circles just like yours night after night then the mottled livedo reticularsis .

So many little changes we get used to sometimes forget they aren't.

Shouldnt worry but if they get worse or spread better to ask a doctor.Think I will ask mine next appt too.

[apexx in reply to littleeffie]

ahhh, thank you littleeffie!

I know what you mean about the abnormal becoming normal, when you're dealing with something that causes all kinds of little things to change on a daily basis! I've kept this in mind as I struggle with the same thought process too. I feel much better after reading yours and everybody else's replies here, though. This community is wonderful! I just tend to get nervous over certain things. i have a likely irrational and very specific fear of Sepsis, oddly - nothing else medical related, just sepsis. hahah so sometimes I get a little jumpy over little changes. Bizarre, I know. I hope you'll let us/me know if you get any answers about the rash at your next appointment! I intend on bringing mine up/bring the pictures as well, next time I get the chance. Thanks again <3

[EOLHPC in reply to apexx]

You & everyone who has replied have helped me A LOT apex 👏👏👏👏🌟🌟🌟🌟💃💃💃💃....I've not been aware of anyone else experiencing these rashes...am relieved to know am in good company....😉😘

[GERY]

HI. THAT IS ONE RASH I HAVEN'T HAD BUT I AM SURE SOMEONE ELSE HAS. JUST HAVE TO SAY WHAT LOVELY FEET YOU HAVE, I AM REALLY ENVIOUS.

[EOLHPC in reply to GERY]

Apologies for jumping in, apex, but I can't resist:

Gery.: am LAUGHING 😂😂😂😂 and crying...my feet are vvvv like apex's and my artist mother always used to say my feet are lovely...little did she know that there is a BIG dark side to my kind of lovely feet due to the combos of EDS hypermobility + infant onset SLE & early onset sjogrens, my feet have been vvvvv vulnerable... I've needed & still need a lot of professional care and attention to remain weight bearing & functional...so, however lovely they look, my feet are a nightmare....I hope Apex's feet manage to avoid what mine have survived....

[apexx in reply to EOLHPC]

I'm glad you jumped in, coco! I'm, of course, so sorry to hear about your struggles! Feet problems are awful, considering we need them to be able to do just about anything! I've had my own set of struggles with my feet, though I'm sure nothing as bad as yours. At least we have feet that are pretty to look at - I feel like that counts for something!

[foxglove in reply to GERY]

Me too!!! - jealous about the feet. Beautiful!

[apexx in reply to foxglove]

Thank you so much foxglove! Such a lovely compliment to receive! Never thought I'd be so proud of my feet <3 hahah

[apexx in reply to GERY]

Thank you!! This is honestly the nicest reply ever haha <3 You've made my whole day!

[Tiras]

👣👣👣👣👣👣👣👣👣👣👣👣👣Hi Apexx:

I use to have the same type looking rash, not on my knees but in various places they would come and go. I have rashes on top of my right foot, that look a lot like this. The rashes on my foot have been there for almost 2 years. My rashes don't hurt or itch unless they get rubbed. It takes very little of anything to rub them and they will be raw spots and start to bleed or they will blister up. That is why I have had to go barefoot for the last 2 years, I can't wear shoes, they will rub the rashes. Thus Coco has given me the name

👣The Barefoot Gardener👣(There are some photos on my profile page if you want to see them).

As I posted earlier in the week my rashes (other than my right foot) have slowed down as my suntan gets darker from being in the garden and fishing. (I would not recommend getting to much sun with lupus.)

Lupus effects is all in different ways but, then effects us the same. As I have said befor and I'll say it again. This doesn't make sence but, then neither does lupus.

I hope these go away soon!

Wishing you the best.

👣👣👣👣👣Tiras👣👣👣👣👣

[apexx in reply to Tiras]

Hi Tiras, thanks for replying! I have followed your posts since the day I started coming here (which I hope doesn't sound strange!) I absolutely love that you've accepted your rashes/lupus and incorporated it positively in your identity! I am also very glad that you've had a bit of relief from the rashes - especially by doing fun things like gardening and fishing. I would love so much to spend an entire day fishing, but for me, in the sun is generally a bad place to be! Some day, maybe. I am very glad I am not alone. I've never had a single rash up until I started getting sick, so it's all been fairly new to me - and I know that I don't have it nearly as bad as you do, but still, it feels good to know someone else knows what it feels like. Thank you for your kindness and support & I hope that your rashes continue to go down & that you're able to continue gardening and fishing (barefoot, of course!)

Also, I love what you said "Lupus effects is all in different ways but, then effects us the same." This is the absolute truth, even if most people don't understand it.

Apex

[Tiras in reply to apexx]

👣👣👣👣👣👣👣👣👣

Apex;

I forgot to mention you may want to try coconut oil. I apply it from neck down to toes. I apply it in the morning and at night. I also apply coconut oil after every shower/bath. After bath, I don't completely dry with a towel. While I am still damp I apply the coconut oil. I stay completely undressed for about 30 minutes to let the oil absorbe into the skin. (I put it on heavy to absorbe into the skin all over).

Nope not strange at all, actually I'm flattered.

You have to have lupus to fully understand the last statement. It is and isn't the same for all of us.

Oh, I am glad to see someone else's post photos of their feet! Makes me feel like I'm not alone!

I hope you have a good weekend!

👣👣👣Tiras👣👣👣👣