Can you help. Autoimmune urticaria? Makes me feel like I’m burning alive .

[Lisalou19]

No one has ever explained or give reason for my burning skin rashes until last Friday.

Apparently this is what I have caused by an autoimmune response. Confidently given by a joint rhuemy/derm appointment.

If you have experience to share I would be most grateful. This photo has no filter apart from whitening out my eyes as I look so sad. I literally feel like I just want to sleep to avoid this burning. My fatigue is also a killer when I get this burning. Your experience is appreciated as always

Xx

[Maggiez]

Hello. Some people do injections to control it. Here is a video of someone's experience. youtube.com/watch?v=kysNj0Z...(Not working as expected?)

youtube.com/watch?v=a5yoqcS...(Not working as expected?)

[Buckley123]

Oh hun xxx

[Lisalou19 in reply to Buckley123]

😢x

[Boudica1]

Hi Lisalou. I have Urticarial Vasculitis which was the first symptom that lead me on this long road, along with the Jessners and yes the Urticaial Vasculitis can burn like crazy especially if I scratch or rub it and also if the heat of the sun shine's on it even though it's always covered up. Have you been prescribed something to help with the itching? I'm due at my 3 monthly dermy appointment beginning of April and will be asking for something to help with the itch burn that I can get really bad to the point of almost crying. But the rest of the time it's fine or mild so I can distract myself from it it's the sudden hot flushes and sweats at night that are a real pain as that can and does trigger the itch burn still trying to find why I get them as it's deffinately not the change and they've tested the thyroid and that came back ok.

The only tips I can offer are to wear loose cotton clothes when ever possible, try to avoid the heat of the sun as well as it's rays and the most important one of all is to see if the trigger are washing detergents, fabric conditioners and soaps shower gels and shampoo's.

Oh I almost forgot for some strange reason some sweets can make me itch like mad.

It's bad enough being photo-sensitive without the added bonus of the Urticarial Vasculitis but at least the Jessner's doesn't itch too much, so far touch wood.

I really hope you find something that helps you.

X

[Lisalou19 in reply to Boudica1]

I’ve found for ages I choose clothing wisely. When I’m flaring I look at a jumper and know full well it will irritate me.

I don’t get hives which I find strange

Thank you for commenting. I so need you wonderful people in my life xx

[thestorm]

O' Lisalou, so sorry to see this. You poor dear. I do not get the burning as much, when my rashes appear, I get the very itchy kind, like you have poison Ivy. So for me prescribed cortisone creams, Bottled re-fresh dermatologist, pure, organic over the counter facial sprays help the itch and pain. They also soothe the burning. They can be bought on Amazon, or at your local pharmacy, or organic stores. It really helps a lot. Get some, but first ask your dermatologist. Also, cool cloths from the fridge, that I place in a zip baggie, and apply to the burning area. I use bottled filtered, organic water for this. I pray for you that your " Saint Elmo's Fire", will calm down a bit. Sorry, trying to give you a giggle here. Yes, Boudica is right, some foods can be a trigger, it may be a good idea to keep a log of foods you eat for a while. So when you flare, you have something to reference to. Sweets and salt, dairy, and acidic foods can all do it, at least for me. O'ya, Stress, that is a big trigger for flares. Try calming Camomile tea bags on the areas, and drink some every day. Camomile has good healing properties. Like babies, when they get a face or diaper rash, dessitian creams of that type, pure oatmeal packs, organic face butters( from pure sources), and again, ask your dermi before use. Try a small spot of one of these ideas, and see how it feels to you. Rest, rest, rest, your body Lisalou, pamper your body and yourself during flare-ups. I wish you all my prayers and blessings. thestormy sunshineXxx

[Lisalou19 in reply to thestorm]

I itch on arms and legs but face burns. When I’m itching I can’t see a visible rash but my skin marks really bad from the scratching. It does feel like the worst ever allergy but I’ve had bloods taken when this was bad and there was no sign of allergy response. It’s awful as I’m full of fatigue and burning. Thank you for replying xx

[Roarah]

I find oatmeal baths help soothe my hives when I have an outbreak. Are you on an antihistamine? I take Benadryl at night to knock me out and during the day Zyrtec helps. I use cortisone cream on the worst spots too. Hope you feel better soon.

[Lisalou19 in reply to Roarah]

I take phenergan at night time. I don’t really get hives. Just burning and itching. I was told at my most recent appointment that what I have is very well known to be a chronic symptom of autoimmune illnesses. Thank you for your advice xx

[Roarah in reply to Lisalou19]

urticaria is the medical term used for hives, which are an autoimmune response and not always bumps. I have chronic urticaria too but using the layman term was easier to type. There are scripts available if yours are chronic and not responding to over counter things.

[Roarah in reply to Roarah]

Hives are not always individual bumps. Mine present in inflamed red blotches others get welts. There are many presentations of urticaria but treatments are usually similar in that they are trying to suppress the immune response with cream or systemic antihistamine or steroids.

[Lisalou19 in reply to Roarah]

Thank you . I have been told this response is often seen to this degree and that I have all Sjögrens symptoms without antibodies, I have lupus like rashes with out antibodies and that my antibodies I do have Is causing this responsibility. I wish someone had picked up on this years ago 🤨

[KayHimm in reply to Roarah]

Interesting. I was wondering why they called Lisalou’s urticaria. Now it makes sense. XK

[Aria_1008]

Hi Lisalou19, stay strong, I know it feels like you’re in hell. I had something similar and I was prescribed prednisolone (steroids) which has kept it under control for three years. There is a way out x

[Lisalou19 in reply to Aria_1008]

Omg it does feel like hell 😢. It’s lingering far too long at the moment. I don’t get hives which I don’t understand. Is this normal? Thank you for replying xx

[Aria_100 in reply to Lisalou19]

I don't get hive either. I think depends from person to person but we are similar int his respect x

[Louiseclinton]

Hi LisaLou

Try some aloe vera organic gel on the itching it's very soothing/healing and a cold gel which will give some relief to the burning and itching and you can apply as many times as you like.hope you feel better soon.stay strong and positive.x

[Lisalou19 in reply to Louiseclinton]

Thank you. I have treclimus cream from gp. Did you have it on your face? I don’t get hives but all the symptoms really sound like me and largely associated with autoimmune illnesses x

[Louiseclinton]

Aloe vera will help with the burning as it is a cooling gel and heals also..Iv used it on my face for the lesions I get off the sun on my face and it's helped a great deal well it's very rare I get any now.x

[Tile]

Try calamine lotion. Anything for poison ivy or insect bites were the only 2 that worked on the itch. I tried RX stuff everything mentioned. Read up on histamine reactions. It's high histamine that causes itch and wakefulness even though it's not allergies.