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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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  • brittany00875
    brittany00875 heather94146

    Posted

    Hi Heather!

    I am having the same problems with chronic hives. Mine has been going on three years now. I took ciclosporine for about 6 months but had to quit because ciclosporine is a dangerous drug to take for long periods of time. I did get Xolair injections for about 6 months and it worked wonders but I quit after six months on that as well because I was afraid of the side effects. After I quit Xolair, the hives stayed gone for like 3 months. Now, they're back and antihistamines aren't working and the mixture of Zantac and Claritin isn't working. I am at the point where I don't want to leave the house and it's really getting me down. How do you cope with your breakouts when they won't go away?

    Brittany

  • amey793
    amey793 heather94146

    Posted

    I'm into year 2 of CIU, been on ciclosporin since jan 2015 & seen some improvement but last few weeks been awful despite a dose increase. Also on daily fexofenadine & doxepin. Thinking of going private & asking about xolair.. What are the side effects out of interest? My other option is methotrexate but I'm not so keen as would like another child at some point. It's such a pain having CIU, think lots of people don't understand how bad it can be. I have eczema on top of it too 😞
    • heather94146
      heather94146 amey793

      Posted

      My son's allergist told me eczema is usually triggered from something he is eating that he is allergic to. For him it's dairy. He cheats sometimes and always breaks out. When he is sick it flares up too.

      Have you always had eczema?

      I googled Xolair and I went on the link from the manufacturer. Lymphoma is a side effect, so for me, I'd rather have hives.

      What do you think about the leaky gut? Im reading up on it now. How long after you had your baby did the hives start? My first two times my babies were both 18 months old but this time I didn't have a baby and I still got them!

  • MyGingercat
    MyGingercat heather94146

    Posted

    Heather, There are tons of recipes and a whole lot of empathetic moms with our problem with websites with lots of suggestions. 

    since you are a meat-eater it should be easier for you to embrace Paleo.

    Doctors don't know much about the research yet because it is so new. Also there is no money in prescribing a chnge of diet. Pharmaceutical companies don't like it at all! :-D. If you can get off and stay off all medicines, that would be so good for you.Use whole food as your medicine and stay away from ALL processed food, including all starchy foods (simple carbohydrates transform into sugar quickly and your body shouldn't have that sugar. This includes gluten free and rice. I cheat and have rice with ghee sometimes). This diet will be good for your family too, but of course there will be rebellion and they won't have to be strict with it.

    My heart goes out to you. The emotional ups and downs are huge and sometimes I want to quit living. Sleep is my biggest problem and since sleep is healing time this is slowinbg my progress and makes me very depressed. But - I had a good day yesterday and felt on top of the world - more to come!!

    Good luck, Heather L

    • heather94146
      heather94146 MyGingercat

      Posted

      I am having a hard time digesting food. Meat is the worst the past few days. I think I'm going to try some salmon and see how that does. As soon as I'm finished eating I feel like there is lumps of food in my stomach and it's pushing painfully into my chest. I'm going to eat very small portions and see if that makes a difference.

      I had to fast for blood work and it was pure torture. No meds after midnight so I slept for an hour and a half.

      I'm confused over the foods that are allowed on the Paleo, Leaky gut & low histamine diets conflict (which is what you or Loraine told me).

      I hope your good days are a sign that this is soon over for you! I will keep my fingers crossed for you!

    • MyGingercat
      MyGingercat heather94146

      Posted

      Heather, Basic Paleo is pretty straight forward. No grains,no sucrose and low fructose and no dairy. Vegetable oils are toxic, but olive and coconut oils are OK. Don't skimp on fats, as long as they are healthy animal fats or the 2 oils along with ghee. Eggs - whites only. I make a good battered fish fry today that was dipped in arrowroot flour (no corn flour allowed) then whipped eggwhite snd fried in coconut oil. Almost tempura! Served ith lemon juice. Avoid 99% of processed foods - you don't really know (but someimtes you do) what's in them. When you buy coconut milk, check out the ingrdients list and only get the 100% products. Lucky me, I can get the fresh stuff down at my local open market.

      Try it for a few weeks. Find the diet that works for you, health-wise, taste-wise and what makes you feel best mentally.. I'm still working on that.

  • lorraine34338
    lorraine34338 heather94146

    Posted

    Heather I found that I could eat porridge using rice or oat milk and I believe coconut milk would be ok. Also chicken and red meat well cooked but not in oil, braised and vegetables steamed. Fish poached or steamed. Non wheat bread I could use for sandwiches for work or toast etc. I used a scraping of butter, not margarine. Fillings again chicken but must be fresh not left for a day or two, but ok one day after. I couldn't eat fruit the acid gave me indigestion but I think that's because I'd had my gall bladder out. I'm ok now but for a while I could eat fruit or oily foods. I still have a bit of trouble.

    Rice is ok. But its boring - but it can work. Hope it does for you.

    • MyGingercat
      MyGingercat lorraine34338

      Posted

      Lorraine, Rice doesn't have to be boring. There are many different varieties. To spruce it up, saute some finely chopped vegetables and add them to the rice with ghee and a pinch of thyme. Yum! I serve that for breakfast to my Airbnb guests - most people love it.
    • heather94146
      heather94146 lorraine34338

      Posted

      My son drinks rice milk and it's pretty good. I probably would like coconut milk more. I made a big batch of jasmine rice today. I k ow brown is better but this was what I could get in non-gmo. I normally love to eat but since I started this group chat the other day, each time I eat I am worse so I am basically eating not to starve.

      I am going to call my insurance company and see of Im covered to go to a nutritionist. Plus results from blood tests should be in Friday.

      Do you or Gingercat have a favorite tea?

    • lorraine34338
      lorraine34338 heather94146

      Posted

      You need to ask for a Gut Permeability Test this is what identifies whether you have leaky gut or not. I had this done at my own cost and I did have leaky gut so it was worth it to know for sure which makes the difficult diet more easy to swallow - forgive the pun!
    • heather94146
      heather94146 lorraine34338

      Posted

      What type of doctor did your test or was it a nutritionist?

      I'm looking forward to knowing what's going on with my stomach because then I will also know which diet to follow.

    • lorraine34338
      lorraine34338 heather94146

      Posted

      In the UK doctors do not believe in leaky gut so I did this test through my nutrionalist. Its called a gut permiability test. If you have problems getting a nutrionalist to help I can contact mine and maybe get her to recommend some one. I can't remember are you from UK or US?
  • MyGingercat
    MyGingercat heather94146

    Posted

    Heather, when I drink a hot drink it is often distilled water with fresh lemon juice (obvioulsy no sweetener). I use nothing but distilled water now as it helps to detoxify my system. There is infor on-line about that.

    Not sure that brown rice is better than white rice. I remember reading something about it blocking nutrients or something. I will eventually do research on that. If it doesn't make you sick - what the hxll, enjoy it!!

    • lorraine34338
      lorraine34338 MyGingercat

      Posted

      Citrus is very bad for us hivey people keep off it - applie juice would be better.
    • MyGingercat
      MyGingercat lorraine34338

      Posted

      Lemon and lime OK - oranges, grapefruit and apple juice = too much sugar, but apple cider vinegar is good..
    • heather94146
      heather94146 MyGingercat

      Posted

      Yes. So far the white rice is OK so I'm not changing yet! Another hive sufferer told me she bought a water alkanizer and she swears it helped her. So far I'm only using filtered water. Today I had a scrambled egg and an avacado...we will see. I will be making the hot lemon...I forgot about it. I used to drink it a lot when I had "tummy" troubles!
    • lorraine34338
      lorraine34338 MyGingercat

      Posted

      You shouldn't have any vinegar products when you have hives it'll make them worse. If you want to test this out pour a little vinegar onto a sensitive part of your skin - like inner thighs and see what happens.  I accidentally did this and I had itchy red lines down my legs where the vinegar had run down - so be careful. All citrus fruits are not good for us hivey people look it up if you don't believe me. I was told to drink herbal teas such camomile, peppermint, nettle etc and keep away from fruit teas. I am in remission by following these rules
    • lorraine34338
      lorraine34338 heather94146

      Posted

      Hi sorry to interrupt your discussion but keep away from citrus its to acidic and will make your hives worse. Drink herbal teas, camomile, nettle etc. I've mentioned earlier I'm in remission - no hives but still being careful.
    • heather94146
      heather94146 lorraine34338

      Posted

      I am keeping everything bland. I was OK with that apple and the avacado. If I can just find a few things to live on right now I will be happy! I was going to make some bone broth today (chicken) and put it over my rice...this is wild for me now...lol
    • lorraine34338
      lorraine34338 heather94146

      Posted

      Don't forget there are lots of veg you can eat but they must be cooked well but beans, pulses, aubergine are high in histamine so don't have them. Squash, sweet potato are ok so you see there is a lot you can eat.
    • heather94146
      heather94146 lorraine34338

      Posted

      I bought a bag of potaoes & I baked a butternut & a spaghetti squash so that's good too!! See, things are looking up!
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