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3rd round of chronic hives

Posted , 11 users are following.

heather94146
heather94146

I am hoping to hear from people who have chronic hives too. Since this is my 3rd round I sort of know what has worked for me and what doesn't, what I think causes it, & what triggers it. But as all of you know the bottom line is there are no concrete answers. I refuse to take the drug Xolair- the side affects are way worse than the hives!!

I'm at the point where I am on antihistamines all day and night. I can't sleep at night and I can't function properly during the day. You all know what its like! I dread taking another medrol dose pack. I feel awful. I notice that when I eat they get worse. I also realize that the longer I have them, the more problems flare up. My gums will bleed, joints will swell- things that only happen while I have CH, so I won't let dentist or docs treat for things that I think just flare up because every time they go away when the hives do. My daughter bought this giant aloe leaf and scraped it out and i keep the fresh aloe in the fridge and it helps momentarily (I think because it's cold) but I go through constant waves of being super hot, to freezing cold. This week has been one of the worst.

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49 Replies

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  • lindsay83473
    lindsay83473 heather94146

    Posted

    Hi- I have been experiencing hives for the last 3-4 months. I definitely believe there is a correlation to what I am eating and stress levels as a trigger to my hives. I am going to see a holistic dr dec 1 and was wondering what questions or tests I should be asking for (food, gut, parasite, etc??) I’ve had a ton of tests run already be all came back normal. My immunologist thinks it’s stress and if I reduce stress it will go away. Some days o don’t have hives and others they are a pain (only have them on butt and backs of legs). I do have ear ringing which may be during activations/ reactions or from some of the medicines. Is there risk in only taking antihistamines when hives flare up or does staying on them round the clock “teach” them To go away and eventually they do? I’m a panicked mess and feel like I’m also constantly worried if hives are cropping up. Any advice would be appreciate!
  • lindsay83473
    lindsay83473 heather94146

    Posted

    Heather any update on how you are doing with your hives?
    • heather94146
      heather94146 lindsay83473

      Posted

      Hi. Well im going to to lightly say my hives are "under control" at the moment. I do not have health insurance at the moment. Right before I went off my insurance I stayed with the same allergy practice but switch doctors within the practice and she was very good and determined to find out exactly why I had hives. She did some extensive blood work and figured out that it was something to do with my C cells. She needed to do more blood work to figure more out but that's when I lost my insurance. I did take the xolair shot for almost a year but I did have breakouts during the time I was getting the shot so toward the end of my insurance I was getting my shot twice a month and then had to stop that as well.

      I work in New Jersey during the summer so between not being home and not having insurance I was afraid my hives would get worse and I asked my doctor to put me on a steroid pack cuz if I remember correctly I was having a really bad break out then so she prescribe me steroids to take more than the Medrol dose pack it wasn't a prescription bottle and I started off with so many for so many days excetera. But I own my own took them differently because they were a 10 milligram mg steroid. I took one 10 mg steroid everyday until my hives calm down which took probably a few days till they were under control and I kept it up for another two weeks or so after maybe a month now that I'm thinking about it. Then I weaned myself down to 5 mg every day and that's where I've been until recently I'm taking 2.5 ml mg every other day because they've been pretty good knock on wood. I do have to keep myself cool and my air conditioning down in my apartment now that I'm back in Florida. I cannot eat jalapeno peppers for some weird reason

      I think mine is definitely autoimmune and hopefully when I get insurance again we can continue the blood tests. In the meantime I have adjusted my diet significantly I don't drink any beer or wine I follow a gluten-free diet and my motto is fresh and whole I do occasionally have gluten free pasta but I could live without it I prefer rice and potatoes. I eat a lot of vegetables and eggs I can't tell you how many eggs I eat tons LOL I do use cheese because I love cheese. I also drink kefir. And I just recently started back on bone broth for meals and snacks and I already feel better. The information that goes along with having chronic hives bothers me that's why the gluten-free diet works for me and I don't feel sluggish anymore. I do have a regimen of antihistamines that I take daily in the morning and that night. I am going to say for right now I am having a quote on quote good spell but I noticed before I start getting them really bad I get very tired and fatigued and that's how I've been the past couple days. Also around that time of the month I noticed they are bad and I require much more rest.

      Please keep in touch with me so I know how you are doing.

      If you have anymore questions or I can help you in any way let me know.

  • lindsay83473
    lindsay83473 heather94146

    Posted

    Thanks heather! It’s so nice to talk to you and others going through this. I am interested on what testing was run to uncover something with you “c” cells. I agree mine is stress and autoimmune related and it’s so scary. I just want to get to the bottoms of it. Hope things work out with your insurance and you find answers soon! Keep me posted if you are able to share what tests your previous dr ran. I’d love to ask mine about them. 
  • desmond01416
    desmond01416 heather94146

    Posted

    Hi Heather, I'd trust your instinct with the eating trigger. I would try a strict elimination / rotation diet for a few months. It's hard work, but it might show up things that don't help. 

    You could get a blood RAST test done for common allergens and get your IgE levels checked overall and to specific allergen proteins.

    In the elimination diet, focus on fresh fruit, vegetables and herbs, brown rice. If you eat meat and fish, stay away from processed meat/fish and from the meat/fish people tend to be allergic to (e.g. Cod, Shellfish).

    Lindsay and others like me often point to things like:

    gluten

    alcohol (especially wine - see sulphite additives)

    caffeine

    milk / lactose (especially if grass allergy)

    citrus

    fish / shellfish

    avocado / banana (related to latex allergies)

    nuts (related to tree allergies - like Hazelnut)

    peanuts (you'll tend to know if this is a problem)

    food additives (sulphites, salicylates, benzoates, artificial colours and preservaties, some antioxidants with me)

    detergents and perfumes (use pure Castile soap for EVERYTHING, clothes, body and so on for a while to test)

    Also, pet, mold and dust mite allergies can be in the mix as these autoimmune conditions are often related to Hay Fever, Asthma and so on.

    Finally, try to get more sleep and rest. Your body and autoimmune system is trying telling you something when these things flair. Maybe ask yourself, how busy, stressful and unrestful has your life been in the run up to the flares. New babies, new jobs, house moves, relationship stress, money worries, bereavement, ill-health, arguments, commuting, overwork, problems at work or anything that creates unusual pressure can trigger this. Mindfulness-based stress reduction can help with seeing these causes and dealing with them more effectively. Sometimes we get so used to stress, we don't even know it's there. And Urticaria itself causes huge amounts of stress. So break the vicious circle.

    You might need to power down for a few months, as much as possible, for your body, mind, immune system to recover. Can you get some downtime?

  • jana94738
    jana94738 heather94146

    Posted

    Hi Heather

    I have had the chronic hives for over 4 months.. I am taking xolair i cant stand it anymore.. I get angioedema and that is so scarey.. and i itch so bad.. I will be taking my third xolair shot just wish they would help so i could be hive free long enough to do allergy testing and hopefully find out what causes these.. I know xolair has so many side effects but so does prednison and antihistamines and my bp meds ..so i decided to risk it.. I do know when i am having a bad flare up i take an epsom salt soak for 40 mins and it flattens them right out and they dont itch.. which is bizarre as when i get warm i get them.. I also started taking magnesium in hopes that would help.. it is so frustrating I know ..  I went thru the super hot when on prednisone which i do take if the angioedema starts so i dont end up in er.. sorry we all have to deal with this..

    • heather94146
      heather94146 jana94738

      Posted

      Have you read anything on lectin intolerance? Im just learning about it and my mind is blown. Dr. Gundry is who im following on youtube. Look it up please and let me know what you think.

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