desperately need advice

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I have suffered with urticaria for about 2 years now. Have outbreaks every single day, 2 or 3 times a day now. Doctors gave me fexafenadine when I first went and every time I mention it...oh nothing more can be done. Yesterday I had the worst outbreak ever, both eyes were completely swollen closed, took a tablet and finally went down about 4pm. Went to the docs and all they gave me were eye drops! Feeling so scared now because what if it happens when im driving? What if it spreads to my throat?

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  • Posted

    Hi sallyann Hang in there! It is frustrating and depressing when this condition is so persistent. I have had full body hives for 2 years as well. On only a couple of occassions it went to my eyes and lips. I read that it is rare that it will go to your throat, but it is worriesome. I use Apple cider vinegar swabbed all over my hives and body. It is like magic to take away the itching and it seems to settle the hives down and get them healing. Lotion and lavendar water are nice to keep the skin cool. Use them frequently to help prevent episodes. I barely have mine under control. I still have them every day, but they are not quite as maddening. I took 3 anithistamines a day for a year. Now I am seeing a chinese doctor. She says I have heat on my liver and is giving me "cooling teas". They help and I have dropped on antihistimine and now take 2 a day.
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    • Posted

      I get a sack of tea ingredients from the chinese doctor each week. I boil them at home and drink one cup twice a day. I asked her what she was putting in there and she said it was a blend for cooling, astringent and calming herbs. The mix itself looks like a pile of forest debris with wood chunks, leaves, berries, bark, sometimes seashell and one time cicada body shells! (so that I would take on the strong skin of the cicada. That one was a little harder to drink) To be honest, I haven't pinned her down on the names of things in the mix. She added licorice and date to sweeten the dreadfully bitter blend, but those were not medicinal. My herbalist friend recognised ginsing. The chinese doc changes the brew slightly each time, depending on my recovery and how long it is healthy to take any given ingredient. My herbalist friend recently brought me some dried stinging nettle leaves and said they could be brewed for a cooling tea.
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  • Posted

    Are your triggers heat, anxiety, pressure, stress. . . ?
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    • Posted

      those are my triggers you are not alone on that one, again tried everything but nothing!!! going to a dermotoligist but I dont think this will help, my dr only sent me there because he fed up me going to him all the time!!! after this im going to demand xleoir shots I cant live like this anymore.will try the cooling teas any suggestions helps 
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    • Posted

      dermatoligist told me this is "heat allergy". She is the one who put me on 3 antihistimines a day, and she referred me to an allergist. The allergist confirmed that it is like a heat allergy, in that it is the cholinergic receptor going haywire. The cholinergic receptors regulate heat and pressure. treatments aim at taking out some level of the histamine cascade that is triggered by the cholinergic receptor. The dermatologist and allergist can only think to add Pepcid ac and then immunosuppressants to the antihistimines. This is when I decided to see what Chinese medicine could do. I'm 4 weeks in on acupuncture and chinese medicine teas.
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  • Posted

    Hi Sallyann,

    I feel your pain, the story is a little long winded so bear with me 😊

    Only Monday midnight i was in A&E in agony with, what is now a suspected drug eruption. A massive dose of steriods & antihistamines for 3 days (and another 2 days to go) and I'm just starting to look normal.

    I take fexofenadine everyday for allergic rhinitis and mild rashes/hives etc..so when this mystery rash appeared 4 weeks ago I was stumped.

    What started with a rash and angiodema on my hands was spreading because no one would deal with it.

    I was told at the out of hours GP it was something I washed my hands with and sent away with benovate cream, piriton and eurax, despite me telling them I was taking double fexofenadine and it wouldn't settle

    My surgery were no help a few days on when I still couldn't bend my fingers and sent me away 3 days before Xmas with benadryl and instructions to continue fexofenadine.

    An 11pm call to Nhs 111 on the Saturday after Xmas resulted in me yet again going to the out of hours pleading for someone to rip my arms off.

    The rash was getting worse and so painful.

    I sat in bed for a week barely able to use my hands or move without suddenly more and more pain, i couldn't take a shower, it made it worse.

    By Monday my asthma was worsening and my legs, tummy, chest, shoulders, wrists, hands and forehead were covered in urticaria.

    I took myself to A&E telling them my breathing was being effected and I couldn't risk a full on asthma attack, it felt like i wss being stabbed in my chest.

    Finally I saw a lovely Nurse and Dr that agreed this needed intervention quickly and I was started on steriods & more antihistamines and a message sent to my GP to book me in with immunology ASAP.

    I went to the GP and 24hrs on could still show her the rash as its left purple scarring. I also took pictures of all the different places it showed up.

    Mine is a suspected drug eruption to Gabapentin but because I have other underlying illnesses and several drug allergies it could be chronic uticaria or something else but finally someone acknowledged it.

    If you feel your throat, tongue, lips swelling/tightening or your breathing getting worse do not hesitate to go straight to A&E.

    I wouldn't advise doing what I did and doubling doses of fexofenadine and taking piriton/benadryl without asking a medical opinion (the pharmacist was more useful than the first two GPs I saw)

    If you haven't already start taking pictures of the outbreaks, note any triggers, what time you took the fexofenadine and how long it takes to settle.

    If the fexofenadine isn't working independently its not good enough.

    Also try and get to see an immunology team if you haven't been referred, if you have its time for a review.

    They might not be able to help more than fexofenadine but I'm sure you'll feel more confident with your condition if you get to talk to them about any changes.

    I hope this helps you make a decision on whether to push on for more information before the potential for it getting worse begins.

    Xoxo

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  • Posted

    Some of you sound like me when it was at its worst. If you are really struggling badly, I highly recommend trying doxepin rather than steroids. It got me out of the worst of it. But be warned side affects are strong, heavy sedation, sleepiness, increased appetite, weight gain, dry mouth, dizziness, indigestion. But it's worth that if you are in extreme discomfort. Docs don't understand how bad it feels. We know it's like having burns all over your body. Again, a low histamine diet, no sulphites, benzoates or glutamates and no alcohol helped me too. Fexofenadine give only minimal help. Doxepin is the motherload for stopping allergic symptoms, at least for me. Problem is, you won't want to stay on it long. For a start, I really couldn't drive before the late afternoon on it. It also kills your energy. But it buys you time to figure out what helps without being tormented and having no sleep. A and E gave me atarax once, that helped a little to disconnect me from it and get sleep but the symptoms were still there on atarax you just aren't quite so aware of them because of sedation which isn't super helpful and they also do make you pretty sleepy next day.
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  • Posted

    I am still doing the Chinese medicine alternative, acupuncture and tea, down to 1/2 claritin per day this week. No hives this past month for the first time in 2 years. Also reading up on Histamine intolerance in foods. Could be something there. . . 

     

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    • Posted

      Hi.. Do you know what's in your tea?

      Just wanted to pass this on from my fibromyalgia team.

      Both the physiotherapist and psychologist warned me off Chinese medicine only this week, not because it's bad but because apparently (this could be isolated to my local area) steriod and aspirin were found in some samples of tea, I don't know whether that's herbal or traditional but its not great if it's traditional.

      Not saying this is the case in all Chinese medicine at all but it's worth being sure what you are drinking.

      X

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    • Posted

      thank you clurbur! I have joked that she was grinding up antihistimine in there, but I do hope it is not true! Ultimately, I wish to wean off the tea. When I look through the blend each week, I see sticks, bark, leaves of all sizes, rose hip looking things. . . a dozen things in each blend. I have a biology degree and believe in western medicine. I don't know how or why this other stuff works, but I was desperate. I will keep your words in mind. Thank you!
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    • Posted

      I was all for trying it, I did acupuncture for a bit on my spine (through my physio) and so that's why I asked.

      I guess because my urticaria is still an unknown and I have lots of drug allergies it's not the greatest thing to try!

      I do hope it is working for you though and if you wean off and it's settled that's great!

      I lol'd at your crushing of antihistamines, I had visions of the same when they said about the steriod and aspirin!

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