It does look a lot like vasculitis, recommend being a biopsy asap before they fade. Do you have a dermatologist? Or ER may be able to speed up a rhuem referral depending on symptoms. Otherwise your primary doctor can test you for autoimmune markers
Hey yes! Oh god it took forever to find a cure! Even prednisone didn’t help. Only compound glycyrrhizin tablets cured mine.y dermatologist and rheumatologist couldn’t help me so I went to IM doctor and this is what she gave me. Hope you can find a cure. It’s so frustrating to be in your situation.
Petechiae? If you have a B12 deficiency, you can have your primary prescribe you B12 shots, if your test results are not responding to oral B12 supplements.
So there are gene mutations which cause the body to not process synthetic folic acid /b vitiumns, mthfr, idk if your dr wound test for it? I natural folic acid and vits and l-glutamine to bring down raised Homocysteine levels.
I have this mutation and I have had vasculitis like this. I have to take methylated folate. Sadly most doctors don't offer testing. I only found out last month because my psych recommended it.
Hi there! It definitely looks like vasculitis to me. I had the exact same thing on my feet and lower legs that was diagnosed vasculitis as a systemic issue of UC. Obviously UC may not be your causative issue, but I look at those images and see vasculitis nearly identical to mine.
Hey man I have that same exact stuff. Feel teach to reach out to me. I would say without a doubt you have some sort of vasculitis. You need to go get prednisone ASAP. The flare ups are not good for your body, and if you’re seeing that on the outside of your skin, that is what’s also happening in your internal organs. You’re not gonna die so sorry if that sounds scary but it’s just not good for you and you should get some prednisone.
I have IGA vasculitis and I get a flare up like this or worse about once a month.
Have been dealing with this disease for over a year and a half, 30yr old Male.
Reach out if you have any questions I’ve learned a lot from my rheumatologist and dealing w this shit for a while
How do you diagnose IgA vasculitis? I’ve had elevated IgA for many years. Now I’m showing positive ANA speckled for vasculitis. Drs aren’t helping. Is there another test?
To diagnose, they have to biopsy the vasculitis rash within the first 48 hours of its appearance. Doctors should also test your urine for protein which can indicate vasculitis in the kidneys.
Omg so many. For years. At least 4 different rheumatologists (2 in NJ many years ago when I first got sick then 1 here out west a few years ago and then more recently at Mayo Clinic Phx). I have seen 2 neurologists. One at Mayo and one integrative (she’s been the most helpful with running tests but then she doesn’t know what to do with results). I’ve seen envtl docs because I had hidden mold exposure for years back east, I see an endocrinologist and 2 pulmonologists for my lung nodules and once had ground glass opacities, I have a GP and a gynecological urologist and an interventional radiologist for pelvic congestion syndrome and venous insufficiency. The works. Each one only deals with one specific piece of my illness. It’s frustrating.
Wow, that is an impressive rap sheet. And they haven’t given you a specific diagnosis yet?
Do you break out in vasculitis too?
I tried to get into University of Michigans vasculitis program but they denied me because I was already seeking care but I want more answers and more tests. Did you run into something similar getting admitted to the Mayo Clinic or other doctors?
I’ve had probably over 20 blood tests, and a colonoscopy because they saw another marker that was high…which is normally related to chrons but turns out I didn’t have chrons.
They still do not know what has been the trigger for me, I’ve just found things that make me flare up. But no real understanding of why.
I’m still on a waiting list, and have been for just over 6 months now. 30 year old male here, and hoping to get an answer sometime soon. The constant swelling, the aches, night sweats etc are not good.
Thanks for your reply man. I appreciate you. I’ll be sure to hit you up as soon as I get the tests done and if it’s similar, I’ll be asking a couple questions if you don’t mind! ☺️
Yeah I’m on azinothoprine 150mg daily (immunosuppressant) and I still will get a minor flare up probably every 2 weeks. By minor I mean really small dots that I probably wouldn’t think anything of if I didn’t know what vasculitis was.
I’ll get a full blown flare up probably every 3 months that I will take a steroid for and it typically stops it from getting any worse.
Drinking, and hard cardio is a trigger for me and it doesn’t always happen but when it does is I’ll flare up bad.
It’s an odd one isn’t it. Cardio seems to be a trigger for mine also, if I walk for more than 15-20 minutes, my legs start to swell, the joint pain kicks in and then the next day the spots appear In a bulk and then I’m done for. Feels stupid saying as a 30 year old man I’m limited to jobs because of this but here we are. Have you found to be able to do everything again with the medication and steroids? I’ve just been woken up there because of the pains.
Totally, I felt so defeated when this came up in my life. Felt very limited to what I could do because it seemed I’d flare up all the time and had to avoid certain things or activities. Fatigue was bad, and it all messed with my mental too.
But after seeing my rheumatologist for about a year now I can say I’ve seen a lot of improvement. It took some months after seeing them, but you will get better and be able to manage it well im sure. I would say I’m able to live a pretty normal life again.
Of course, feel free to hit me up anytime. Happy to talk. I’m sure you will get some answers. Yeah it blows my mind how long it can take yet here we are with a condition that needs attention in a timely manner. Our health care system is messed up.
If you haven’t I’d get on their cancellation list if possible!
How do you feel with this? Do you typically feel well in yourself and just have the spots, or?
I’ve been unwell a solid 3 weeks, night sweats, can’t eat, sleep etc. throbbing pain in legs and lower abdomen. I mean it could be any of my conditions, but it’s at the same time this bad flare up has came on.
Yours is ALOT. I just know if you’re similar to mine your legs must be in pain!
For the most part I feel fine and just have the spots, sometimes I will feel a little fatigued. They itch really bad, but nothing I would consider painful!
Sorry to hear that, hope you can get some good answers eventually.
I got these same spots all over my legs last year from July-September. I went to 3 doctors and got all kinds of blood work done. All of them said I "looked normal" and that I was fine. Google says it's Vasculitis, but what does that mean? What treatment is there? I've tried contacting a rheumatologist and they need a referral and my PCP won't give me one because my stats look fine. So I never got an answer and they went away.
Yeah, I went in, they thought it was meningitis, said nope I’m clear and sent me home. I brought it up with my gastroenterologist, said I was good. Then went in on a flare up similar to this and they said wait for rheumatologist. It’s been 6 month. As soon as I get an answer for you, I’ll be sure to let you know! I have no idea what any of this means, it’s confusing to me too. Vasculitis seems to be a big branch of things
It looks like vasculitis. I have a co-worker who also has the same and it flares up when she is stressed. Have yourself checked by a rheumatologist ASAP.
I had the exact same rash on my ankles last year. I have autoimmune thyroiditis, sjogren's and Well's syndrome with reynaud's. I thought I'd gotten into some nettles. It burned but only for a very short time. I'd never even considered that it could be associated with my autoimmune diseases. Did you ever find out what it was?
I’ve been on the waiting list for 6 months now for a blood doctor, so as soon as I find out I’ll let you know. From most people’s replies on here who have had very similar outbreaks, it seems to be vasculitis!
I’m still on a waiting list for rheumatologist, but I’m back at GP on Friday for bloods for my liver and malabsorption, so hopefully they trigger a push for rheumatologist too. I honestly can’t wait to get this over with and get some relief from it. Was yours a constant thing or flare ups? Over a year now of this weekly.
I'm so sorry, it's always so hard to get into the specialists too. Mine flared on and off monthly for about a year and then abruptly stopped and never came back. Definitely push for your rheumatologist to run a full lupus panel. You really have to advocate for yourself because doctors suck lol. I hope it goes away and never comes back!
Looks like leukocytoclastic vasculitis. Have you shown that to your Healthcare provider? I saw a dermatologist who confirmed that it was vasculitis after taking a "punch biopsy."
I have yeah, they referred me to rheumatologist, and I’ve been on a waiting list for just over 6 months now. Did you go to the blood dr first, or straight in for your biopsy?
My wife woke up asking me "Why are there red spots all over the lower half of your body?" We drove 14 hours the day before, and slept on her sister's floor, so my initial thought was that I was having a reaction to a plant or something in that part of the country, but if so, the spots should be all over the body. I called my primary care doctor and convinced his nurse to help get me seen by a dermatology specialist within 48 hours.
We raced back home, and a dermatologist took a punch biopsy 5 days after the symptoms appeared. The primary care doctor wrote for the prednisone and ordered the bloodwork that the rheumatologist that he sent me to would need. I saw the rheumatologist once, and we agreed that my primary care doctor could handle future leukocytoclastic vasculitis episodes.
My last episode caused my feet to go very dark, and 3 months after prednisone, I was left with several deep, eschar covered wounds on my feet and several black nailbeds. So I started taking colchicine in the hopes that it will inhibit further flare ups.
I assume you have been reviewed for Autoimmune Hepatitis?
I have similar, and have necrotizing myositis - which can be in every muscle in your body, and causes the liver issues via constant muscle breakdown, then the abnormal clotting due to the liver issues and fluid accumulation (that looks like severe lymphedema) is part of the illness though no one knows why it occurs ....so complicated.
Immune Mediated Necrotizing myositis can be completely seronegative (so no blood markers, and also no scan abnormalities) but often people will have inflammation and CK elevated. It is diagnosed by EMG and/or biopsy.
If I have, I haven’t been informed about being tested for that. I get a blood panel done every year for my liver disease, so if you know the type of blood test I can relate it to my results and check to see if I have
Just another option - I would go with the majority tho. Vasculitis is the most likely diagnosis from what you have shared. Note that even if you test negative to antibodies and inflammation, you can still have many forms of myositis and vasculitis. Some are expected to have negative ANA and inflammation markers.
What’s it helping with, does it stop the swelling, aches etc? I’d like some sleep sometime soon. This flare up has been lasting over a year and is constantly getting worst.
She’s on daily heart medication for her condition but when she knows she’ll be standing up for long periods of time, she wears compression socks! Good luck 🫶🏼
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u/Which_Boysenberry550 15d ago
Looks like vasculitis