Urticaria and angiodema

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well i dont really know where to start. about 6 months ago it all started when i was at work and my ankles and hands suddenly was really itchy. at first there was nothing there and i thought it must of just been a bite from something so i took some antihistimines hoping it would stop, unfortunatly it didnt stop and it got worse spreading to my legs and then i noticed i had a red rash appearing where i was itchy.. this stayed this way for a few days when then one day i woke up covered in whelts and they was uncontrolably itchy i just didnt know what to do.. i spoke to my mum who told me i looked like i was having a break out of urticaria and she had this for 3 years and i remember the stress she went through trying to stop it. eventually i saw my doctor who confirmed i had urticaria and i have been back and forth so many times since this being put on all kinds of antihistimines which non of them did anything. i ended up A&E one evening as my chest was red raw and spreading up over my face and neck and i just wanted to scratch my skin off it was horrible. they put me on steriods for a week 8 a day 40mg and this cleared it up within 24/48 hours and it was such a relief. unfortunatly 2 days after coming off them i broke out in hives again and this time it come with angiodema and my lip was swollen it looked like i had a dodgy lip filler. this made me very upset and i was getting so stressed as it had been a good 3/4 months at this point. my doctor put me back on steriods for a 7 week course aswell as antihistines and again it cleared up and i felt great apart from then side affects started to happen from them and i was getting a moon face gaining weight, hungry all the time dizzy. i did this 7 week course 3 times then i wanted to stop as the side affects was getting worse and in this time i had already gained a stone in weight. my docs have refered me to a dermetoliagist back in the febuary and i have to wait 6 months to be seen. i am now currently on 5 different antihisimines and a different steriod x1 a day which is doing nothing i am still breaking out loads in hives and its everywhere, its now effecting my life as much as im trying to not let it unless you have dealt with it yourself its so hard to explain to anyone how it makes you feel.. not only that they dont exactly look nice and doesnt help your stress levels as much as you try to stay calm...

has anybody had this thereself and found anything that works or has seen a dermetolagist and will they give me something that will work.. my doc said they might have to put me on immune tablets but untill my allergy and blood tests they dont know. my doctors words was well your a medical mystery usually antihistimines work but its not on you and they dont know what to do with me.. this doesnt give me much hope in it clearing 😕 i am at the point i will try anything now! 😦

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  • Posted

    greetings,

    i understand your frustration and your pain 100% . my journey with urticaria and angiodema began during my early teens. I would itch in certain spots, increase to burning and within a few hours, the area would be completely swollen: a patch on my bum, my lips, my foot. The flare would last 2-3 days and disappear . Eight years ago, I developed an itchy corner of my left eye, which was the start of a six month cycle of itching,swelling, taking massive doses of antihistamines (I blacked out on the highway during a roadtrip), steroids, and a cocktail of assorted "inhibitors." I found myself trying to explain my condition constantly. I am a teacher, so, isolating myself wasnt an option. I finally remembered being told about an acupuncturist/herbalist who'd treated friends of mine who'd suffered from various issues. By this point, my immunologist/allergist was calling me every week in order to monitor my progress. When I told him that I would be seeing a doctor of Eastern medicine, he replied," I think that's a very good idea." I now know that my doctors, who practice Western medicine and are trained to treat symptoms, are not allowed to recommend "alternative treatments"

    Anyway, I began treatment with Dr. Han, which my insurance cover. He immediately adjusted my diet, added a daily regimen of Chinese herbs, and acupuncture twice a week. I slowly begin to notice a day without swelling and itching, then a week, then two, before my body began to calm down. I did continue to utilize limited doses of Western medicine, until I was comfortable eliminating it completely. I now experience the random flare, which last in duration a day up to a week. I iMmediately begin my Eastern protocal, and, although I do keep Western meds on hand, I rarely use them.

    Your doctor is correct, practitioners of Western medicine do not understand why our bodies flare and for long durations. It appears that yours has a genetic link, as does mine, after my grandfather's death, I found military hospital discharge records, as he'd had a flare during the Korean war. This was the first familial connection I'd ever known.

    I truly wish you the best in your journey to optimal health. I am living proof that it doesn't last forever. Continue to seek answers, ask questions, and don't be afraid to tell your doctors "no." Be well.

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    • Posted

      thankyou so much for sharing your story aswell! you sound like you have really been through it and there i am moaning about it for 6/7 months lol. i will deff have a look into other medicines i 100% have my options open to try anything to get rid of this.

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  • Posted

    Hi Rachel, so sorry that you are going through such a difficult time with this. I can totally understand, as I have been experiencing something very similar to what you've described.

    I would personally advise you to go back to your dr and ask/insist that you are referred to an Immunology specialist. I have chronic spontaneous urticaria (over 18 months!) and its destroyed my self confidence and self-esteem, caused me to become depressed and isolate myself. There is an injection called Omalizumab, which has proved successful for many patients with this condition. (which I'm waiting for) This is why you need to see an immunology specialist; there's a strict criteria to meet before this is precribed. Another medication which is effective for many is Levocetrizine (high dose+ Montelukust). You can also try avoiding histamine releasing foods+ gluten. But for many with this condition, its due to the fragility of your cells, its like your immune system is over sensitive. I wish you so much luck with this.

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    • Posted

      yes i have hurd of this injection. when i go to the allergy clinic i will hope to be put to the immune speacialist and have something that will work and clear this horrible rash up! not that i would wish this on anybody but its nice to hear that im not alone in this and that there is something out there that will help. i have it so bad nothing seems to work at all so fingers crossed for next week! i hope it works for you and you start to feel yourself again soon

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  • Posted

    Hi

    First I m so sorry you have to deal with these.. mine started out kinda like yours with the horrible itching first.. Then i had the hives for about a year on and off then the angioedema ended me up in the hospital as my throat was closing.. I tried it all and my dermotologist was no help at all.. a waste of my time.. I went to three primary drs and two allergists.. The last allergist put me on xolair .. I have been on it over two years now and I have not had any hives for the last six months.. I used to have a few break outs but none .. So i m extending my shot every month by a week to see what happens alto i m really scared to stop it as some people who have get the hives back with a vengance and then the shot does not work for them again.. I just want to see if maybe i can go a little longer between them.. Last time I tried that I got them back so bad.. But this time i have been able to extend the shot.. So maybe ask one of your Dr about xolair.. it is very very expensive so if you dont have good insurance the company does have a plan that you make a very small copay.. this is in the US tho and I dont know where you live.. Good luck tho..Keep us posted ..

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    • Posted

      thankyou. i am actually waiting for my doctor to call me back now as i cannot stop the itching i am now bruising myself and i need something to stop it for a week before i see the specialist. i am from the UK so its paid from from nhs unless i go private where things get done alot quicker but more money but im thinking about it now

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    • Posted

      Hi Rachel,

      So sorry to hear your story. I suffered from Urticaria for about 9 months and that was nearly 18 months ago. It was the most horrible thing Ive ever had. After seeing all the usual doctors /Allergists/Dermatologist which didnt help at all I eventually visited a Nutritionist who gave me different supplements, they were, Digestive Enzymes, Probiotics and Fish oil capsules which I took every single day before meals [and I still take them as they are so good for you] I was also advised by her to drink 2 Litres of water every day without fail, sustain from chocolate for a while, No tea, and there were certain other things I eliminated from my diet for a period of time. Bingo! After a month my Urticaria was gone. Its worth trying!

      I wish you all the best, keep going, I'm sure it will go for you eventually.

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  • Posted

    We feel your pain!

    I have similar symptoms but isolated on my legs/arms/throat. I tried eliminating histamine from foods.. it did nothing but this does help some people. Just today I stopped taking benedryl all day because I cannot function at work. My allergist prescribed me non-drowsy antihistaimes today to try for a week to see if there is any difference.

    My understanding is that sometimes we will just never figure out what's causing this. Which is truly unfortunate. That said, I find most people saying that at some point they simply stop happening.

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  • Posted

    Try Traditional Chinese medicine (TCM). TCM worked for my 8 year old nephew. I first took him to western doctors and he was prescribed Zyrtec, which he took for a couple of weeks. I did research on Zyrtec and learned about a lawsuit regarding its withdrawal symptoms, which are even more itchy rashes. More research shows a pattern where Zyrtec would work fine for a few years and then suddenly fail, forcing the patient to try steroids. I didn't want this for my nephew, so I looked up the efficacy of TCM. It looked promising so we tried it. It proved to be the right choice. Within 2 months he was free from all medications, diet restrictions and rashes. I've written about this on my older posts if you want more info. Good wishes to you.

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    • Posted

      I am sorry to hear you don't have access to Chinese doctors. There is now a book available on amazon titled "Evidence-based Clinical Chinese Medicine:Volume 3: Chronic Urticaria". The description states that it contains the most commonly used prescriptions. With almost everything being available online these days, it is something you could consider.

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