desperately need advice

Posted , 6 users are following.

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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21 Replies

  • 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 ūüėä

    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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  • Posted

    Hi. I have suffered from chronic urticaria for 15 years. I recently went to visit an Allergist and Rheumatologist that confirmed it is autoimmune related. She put me on the same medicines as my mother who has rheumatoid arthritis - methotrexate. Eventually I will start plaquenil which is an anti maleria drug. By the way I have no allergies, no medical issues other than hives that come and stay for many many months. I was only able to keep the hives down with prednisone and that has really hurt me more. I wish you luck.
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    • Posted

      Hello Ann

      I am so afraid of taking all these drugs. I was just on Dapsone that worked very well at keeping hives away for three weeks until my red blood cells became very low and I had to go off it this week....praying my red cells will get back to normal.  They had to put me back on the prednisone to help fix the red cells....however I know as soon as I go off the prednisone the hives will come back worse.  How did the prednisone hurt you and were you on it for a long time? Please let me know how the methotrexate works for you and the side effects....this is all so depressing....it helps to keep each other informed.

      thank you Ann

      Wendy

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    • Posted

      Hi Wendy...so I have gained a lot of weight with prednisone. It's very bad for your body and bones long term. Even the Rheumatologist /Allergist agreed that there are many drugs that help hives and are much safer. So far methotrexate has been fine. I was a bit nervous because my Allergist kept saying it's a cancer drug but the dosage is very very low. When I realized my mom who is 78 has been taking it for rheumatoid arthritis I was convinced I should try it. You have to take folic acid and have your liver checked. I am healthy otherwise so I was a good candidate. Dr truong in Denver told me that if methotrexate and plaquenil don't work she had 6 other drugs that albeit have side effects...are still safer than steroids. Steroids only mask the issue and don't treat the autoimmune disease...if that is what you have....that is definitely me. Methotrexate and other drugs many times will put the hives into full remission. I urge you to find an allergist/Rheumatologist. I spent 15 years on and off steroids...sleepless night fatigue. ..they affect your adrenal glands..so when you have been on them and try to come off your blood pressure is affected. ..steroids are miracle drugs but only for short periods of time. I currently live in houston but I have to say that I had found some great information on the Internet from British studies. I will look back on my notes and try to send you some links. Have a nice weekend and I do wish you the best.
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    • Posted

      Hello Ann

      I am currently going to an Allergist/Immunologist.  We are in Virginia.  Has your Drs mentioned to you about the Zolair injections? That may be an option for me in the future..recommended by my dr as her patients have done very well with them.  I guess I just wanted to try to deal with this Uricaria in a natural way. Went to get some anti inflammatory foods to try to help.  Yes for me autoimmune and stress are my issues.  I have had the hives only two other times in my life one in my twenties for about a year then a decade later lasted maybe two years but was able to keep it at bay just taking Allegra .  This time I'm in my early 60s and have had this breakout since June......Allegra Zantac Zertec etc.nothing worked except unfortunately the prednisone and Dapsone that I had to get off of.  

      Thank you for sharing......it does help.  Look forward to hearing back. I too wish you the best as well!

      Wendy

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    • Posted

      Hi Wendy

      I have used xolair and it worked one year. I thought I found a miracle drug. It worked within 24 hours and I was on 150 mg per month. 8 months later my hives returned and xolair did not work. They even in creased it to 300 mg. Dr truong thought it was very odd. She never knew of a case where xolair worked then stopped working. She asked to bank some of my blood so they can study why this occurred. Overall xolair does help lots of these cases. It's definitely something you should try. paleo diet may help as well but it's very difficult to follow. It does definitely does decrease inflammation so you may want to read rob wolf's book. It's an interesting read.

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    • Posted

      Hi ann09075, I just found fantastic relief following a low histamine diet, which most of the paleo diet seems to be. I have just figured out that I have a histamine intolerance. Histamine is in all foods, and our own bodies, and also effected by lotions and cosmetics. When food allergy tests are given, they come back negative, because it is not a certain food, it is a certain level of histamine that is contained in the foods and environment that combine in us to create an overall histamine level. When this level gets up to 20-70mg of concentration in our blood plasma, depending on individual tolerances, then wamo, allergic response symptoms. High histamine levels can be due also, to low diamine oxidase levels (the enzyme that breaks down histamine) I am so excited to learn about this. I hope it helps. We want a pharmaceutical free life! Good Luck!
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    • Posted

      hi thoris35,

      How did you figure out you have a histamine intolerance? I've had chronic urticaria for 3 years now. I've tried xolair shots... stopped working after 7 months and have been on dapsone for over a year now. I've started breaking out again. I've also taken the allergy tests that have come back negative. I'm considering doing a food sensitivity test but I have to get off my meds to take it ... which makes me very nervous. Did you take any tests like this?

      Thank you,

      Lindausa

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