Symptoms

[Benne09]

Hello everyone, I wanted to reach out and ask if others experience what I have with my current flare, as some symptoms were new to me this time. Was very scary for me and I will attach some pics. Along with joint pain, pretty much all over I got new pain in my neck, middle of buttocks and really bad rashes. Also burning sensations, even my scalp. It has been really bad with steroids going up to 30mg. Do any of you experience these pains or rashes similar to pics about to attach? Would love your feedback if/when you feel up to it. The illness is beyond awful 😢

[Zuzu798]

Gosh that looks terribly painful, does cold packs help for the rash or pain

[Benne09 in reply to Zuzu798]

Hey, a little but not much tbh

[Lorrie]

Hi I get rashes like that especially on my arms, neck & face mainly if I go out in bright light sometimes. If I am out there longer than 20 minutes it turns into blisters & sores. My GP has given me antibiotic cream to put on which does help & stops most of the blisters turning into ulcers. Have you tried putting aloe vera on the rash as that is very soothing. I have an aloe vera plant that I take a leaf off & rub it gently on the rash to sooth the burning. It really helps. You can put the leaf in a plastic bag in the fridge until you need it again. Just snip the end off so you are using a fresh part of the leaf. Hope this helps. All the best. XX

[Benne09 in reply to Lorrie]

Hi Lorie, thanks for your reply. I will definitely give it a try. Will try anything that may help. Hope you are doing ok today 🤗

[Lorrie in reply to Benne09]

I do hope it helps. I'm just recovering from surgery due to Behcęts induced problems that were picked up in March when I was rushed into hospital where I had to stay in isolation for 3 weeks. It really has been a rough year for me Behcęts wise & just got to the point where I want to feel well again as I've been poorly since Christmas. Look after yourself & I hope things improve for you.

[Benne09 in reply to Lorrie]

I am so sorry to hear that and wishing you a speedy recovery 🤗

[Lorrie in reply to Benne09]

Thanks. All the best to you with your symptoms. XX

[Guna1003]

Hi there. YOU ARE NOT ALONE!! I get the same kind of rashes especially after sun exposure. I only need to be in the sun for 15 mins or so before it gets real bad. I also have slightly different rashes on the buttocks and frequently blisters on the genitalia. I get bruse like marks all over my body that burn, sting and feel like little needles are trying to poke thru from the inside out. These however are vasculitis bruses and the other rashes are Behcets. My scalp occasionally burns and blisters. I use a steroid cream for all of these things except the vasculitis bruses. I get rashes and nodules on the areas my joints hurt due to Rehumatoid arthritis. I love that you still have a sense of humor!! My 16 year old son also has Behcets. His sense of humor is what helps me to see the good in a sucky situation. DONT EVER THAT GO AWAY!! 🙄 it's a survival skill for anyone who deals with an illness of any kind. I hope you find relief for the rashes soon.

[Benne09 in reply to Guna1003]

Hi wow, thanks so much. I thought sun sensitivity was just for Lupus, now realise it affects me and end up flaring . Sorry you go through this also, but makes me feel less alone and some people know exactly how I feel. I appreciate responses from all of you ❤️