Hello all,
I have recently broken out with hard itchy hives, that turn into crusted over lesions. They started on my right arm and hsve spread over back, chest, neck, and right arm. Some also down the side of both legs. It was first thought to be some sort of allergic reaction but after 6 weeks of unsuccessful photo therapy, it has been determined to be an auto immune rash. They are leaving ugly scars and nothing seems to get rid of them. Any suggestions are greatly appreciated.
oh my goodness I am so vexed that I have no suggestions to make. I presume you have seen a dermatologist as well as other specialists to get to the diagnosis so go back and push them for helpful suggestions, let us know how you get on.
Thank you. The dermatologist, allergist, and rheumatologist are all confused. None of them know how to treat it, what caused it or how to stop it. I will keep everyone updated. For now, they want me back on methotrexate
I to have this rash and have for 3 + years, I have RA diagnosed 17 years ago, also rainards, fibromyalgia, a valve to my heart is leaking and for 2 and a half years I have been bringing up blood from my lungs. I have had 2 CT scans, 2 Bronschopys in the 1 st one I was told that there was bacteria in my washings the second one I have no clue as when I ask I’m fobbed off. I then had a heart scan which showed the leak. I still bring up blood, my fingers, hand and up my arm get pins and needles but it feels like I’m being stabbed with little needles. Over the pass 5 months I’ve noticed that the white of my eyes goes a yellow colour and sometimes my skin gets a yellow tint to it.
Over the last year I have declined health wise, Ive gone from a very active person with full time job running a home and all that goes with it also I used to walk for miles carrying shopping to someone who rarely leaves the house can only climb half way up the stairs without getting breathless and out of nowhere I get shaky down one side of my body. I went for a routine dentist appointment and I was asked to have a biopsy due to signs of cancer growing on my tongue.
Fatigue has become like a normal part of my life, I can’t sleep in constant pain and I have now been asked to have a brain scan as of constant headache and lumps on my neck and head as well as flashes of light and my vision becoming blurred.
I was informed by my respiratory consultant that It could possibly be “just in my head “ as he says that he has no clue as to what is wrong with me. I’m at a point now where I just wanna give up as I have no quality of life. I’m injected every 10 to 12 weeks with B12 and my rheumatologist told me a year ago that I have half the average amount of white blood cells to anyone else and then six months later I’m told my white blood cells are attacking my white blood cells. Then I’m left hanging again without answers.
I know my own body and something is seriously wrong I think this maybe down to my bloods? 3 fingers on one hand are clubbing at the tips and one finger on the other hand.
My skin gets thicker where the leisions are and very itchy like some thing is moving under my skin. I find bruises all over my body without reason and I will just bleed out of nowhere, there’s no cuts or old scars that have caused the bleeding. My blood pressure is high and I can see I’ve lost weight as well as family and friends but when weigh there’s little change. I’m bloated and strange as it sounds it’s in my stomach sometimes and then moves round to my lungs which then become bloated??
I know this sounds strange but it is really happening to me and I have no clue as what to do to get the help I really need. My speech becomes slurred at times and I forget words and how to pronounce them which upsets me and I feel stupid. I just feel that my consultant has given up on me and I’m so tired of fighting for answers can someone please help me?
Also if I lie flat my face swells and I have had a cough for so long now and my sinus are blocked a lot of the time
To me what you are both describing sounds like a form of Vasculitis. There are quite a few different forms - Behcets can cause bruising and there’s a form of hives/ urticaria. It would be worth you both asking on the Vasculitis UK HU if you haven’t already. They would be able to advise you on specialists too.
I am so sorry to hear you arw going through all those problems. And I can relate to the frustration of knowing something is wrong but not being able to pinpoint the reason.
The main thing is not to give up. Do what you can for each day that you are able and do not beat yourself up when you don't feel up to doing anything. Keep a medical journal, jotting down symptoms as they come and be proactive with your health. Sometimes we have to be our own patient advocate. Get copies of all test results and doctor visit notes. Also try to bring someone along with you to the appointments. Bring your symptom journal with you so you won't forget to mention all your ailments.
I pray you feel better soon and the doctors get to the bottom of this for you.
MNJones76
Thank you for your advice as I do at times feel like banging my head against a brick wall! I have thought in the past about keeping a journal but never got round to doing it. As when I have written things down I feel that it would be dismissed. However it would give me maybe some direction and build a bigger picture. As I have many problems health wise my consultants don’t communicate with each other and so I feel that they look at their particular field and not the problem as a whole.
I will start it today ! Thank you for your advice and support
It means a lot
Mandy141
Twichytoes
Thank you for your reply as well as your advice I will certainly look into that
I know this may sound like a long shot but have you ever heard of PLEVA or PLC? MY son has similar but so much more severe. To stop the spreading of them we use erythromycin. Unfortunately it causes permanent skin discoloration wherever there were lesions or sores. All your dermatologist would have to do is take a skin biopsy. We searched and searched for answers for my son and the mayo clinic was the one to finally figure it out.
As far as itch we use an additive free soap, and body butter twice a day. Keep the shower cool, the warmer it is, the drier your skin will be. Thus, making it so much worse. Baby oil helps too. Might be a little greasy, but you won't itch as bad. Always make sure to test new items in a small spot in case they burn. We had a really bad experience with a lotion that burned my son's entire torso because it was too harsh.
Please try erythromycin before the methotrexate. It really helped my son.
Oh and they even thought that my son had lupus (he doesnt) before they figured out that he has PLEVA
Vitamin E oil straight from the capsules has been used for scar removal if it is used regularly. You could try massaging a small amount into the scars. It could take a while so don’t get discouraged. I have found it great for soothing small finger burns from the oven too.
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