3rd round of chronic hives

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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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  • Posted

    Hi Heather

    I have only had CIU twice and am now in remission.  As we all do I studied on the net to look for causes. In the end I deduced I had what's called 'Leaky Gut Syndrome' mainly because I'd had my gall bladder out a few years ago and my gut felt heavy and bloated quite alot.  I live in the UK and my specialist didn't believe in leaky gut so I got hold of a sympathetic nutrionalist (I paid for, not on the national health system we have in the UK). She was brilliant did the research, I underwent a gut permiability test and the results came back positive for leaky gut. She gave me advice on what to supplements I needed to help my gut mend, advice on diet etc. Alongside this I saw a dermatologist specialist who put me on cyclosporine (100mgs). I was on this for 6 months, that's the limit of time because it's an immune suppressant used usually for transplant patients. Anyway after two weeks there was significant improvement. I had also discovered that my CIU was also brought on by pressure or chafing and I went about altering what I wore, particular clothes I wore next to my skin. I found that when I did get a hive if I dabbed very salty water on ita few times the itch  went and after a while so did the redness or lump. Although I'm in remission I am still very careful about chafing and I still take fexofenedine (Allegra) in the mornings and loretadine in the evening as a preventative.  I also went onto Doxepin when I was really bad. They are anti-depressants with antihistamine also. I went from very depressed to myself in less than a month and of course the less stress the less hives.

    Have you thought you may have urticaria vasculitis or urticaria angioedema because of the joint swelling etc. If you live in the UK there is a specialist in urticaria based at Sheffield Hallamshire Hospital dermatology called Dr Sabroe, she is very good, only takes NHS patients. You will need your GP to refer you though so good luck.

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    • Posted

      Thank you!! I am in the USA. I definitely have angioderma. By the end of the day I am swollen badly where my bra saps "dig" in to my shoulders. Ive read about leaky gut because my son has food allergies. I buy a lot of organic foods but we do not eat perfectly. Are you taking probiotics? One of my thyroid levels are a little low. There is a doctor here that treats thyroid issues with a different vitamins and supplements. He needs to do a lot of bloodwork first and that is not covered by insurance (& neither are the virus & supplements) but I need to do something. I am trying to not let this ruin my life. I figure there are people out there with worse issues than this but when you're uncomfortable 24/7 and aren't sleeping and living...it's hard! I am going to look into the leaky gut diet today. I am sure I can get some relief there. My derm recommended 1 Claritan in the am and 1 zyrtec and 1 benedryl at night. So I do that and I also live on benedryl during the day and at night right now. The liquid helps faster but really bothers my stomach so much more. Thank you again!
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    • Posted

      Heather

      My nutritionalist recommended taking L-Glutamine powder (you can get it from Amazon) and a good probiotic as well as the diet. Careful with the diet as some of the foods are high in histamine. Go into this knowing the diet limitations as l lost 8lbs (not a bad thing for me). Don't be guided to steroids they are good short term but after you stop some people have had rebound and the hives were worse. My specialist would be worried if l was taking more than 3 antihistames which is why I was put onto cyclosporine.

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    • Posted

      I feel like living on boiled rice and chicken. I guess you just figured put what made you flare up on the diet and avoided it then?

      I feel he more antihistamines I take, the more they don't work and I have to take more. I am going to ask about the med.you mentioned. I am concerned over weight gain with the med but hopefully the diet will help..lol.

      So you are hive free now?

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    • Posted

      Almost - my hives were activated by my immune system and chafing - now its only chafing that creates a hive but not very often. I have the most problems from wearing a bra - the crease under the bust can cause chafing/pressure and I can get a weal or rash BUT I can avoid this by making sure my bra isn't too tight around my chest and keeping my skin dry. This is a bit difficult because I am of that age and get hot flushes! As I mentioned before I still take antihistamines am and pm to maintain my remission - I am not fooled it is gone for good. The first time I had hives they were not too bad and antihistamines got rid of them. I came off them and six months later the hives came back worse so I am not going to make the same mistake and come of the antihistamines. Cyclosporine won't put weight on you but steroids might and they do not take hives away for good as one of my specialists said (I've had two) they are a quick fix for a special occasion maybe Christmas so you can enjoy it but he didn't recommend them.
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    • Posted

      I think pressure from clothing, bras, sports bras & even if my earrings are too tight, makes them come out.

      I have hot flashes too! Fun times!

      I just hate the steroids. They seem like a quick fix when they don't k ow what else to give us. But yes, I will probably take them if I need to. I have never been recommended to take the cyclosporin. I know someone will soon say I need antidepressants but I really don't want to be on them either.

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    • Posted

      Hi Heather, I was totaly miserable with CIU. I discovered I have a leaky gut 3 months ago. I immediately went on a Paleo diet. I lost about 15 pounds (took about a month for my body to accept the no simple carbohydrates routine!) and got rid of 95% of urticaria break outs. I am still healing and expect it will take another 6 months. When I "cheat" on the diet, the welts come back a bit. I take many supplements, but NO medicine - which just make it worse in the long run. The long run is what I'm looking at, so long term diet/life change is what I am after. My sleep patterns are just now starting to imporve. Life will be better even though not so fun now. I have great hope. My skin reflects my gut since they are closely connected. I have great empathy for you and all who suffeer this damned disease.

       

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    • Posted

      I'm guessing leaky is the culprit here sonce you areally the seconomy to say you've had relief after diet changes. My two questions are 1) are docs just not suggesting this or are people just not willing g to try it? 2) I am assuming NO alcohol?

      Once my hives went away last time (after 3 years of suffering every day), I never got over the fear of them coming back. Every itch I had-I was checking for hives. It took me a good year before I was able to believe they weren't coming back. In July when they started in the bends of my knees I was in denial. 3 days later they were everywhere and I also had swelling. I never know what I'm going to look like each day.

      The diet will take some getting used to but I like everything so I know I can do it. Can you eat rice? I don't see it on the can/can't list.

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    • Posted

      Heather - Right - very few Dr's really know much about this phenomonon, however they soon will as there is so much new research on it. Keep in mind that most docs have a 2ndary agenda to perscribe and sell  chemical Medicine. There is no money for the medical professions in perscribing real food! Right - no alcohol. There is no nurishment in it, but may not do harm with extrmem moderation. Like coffee - just give it up for now as there are better days ahead. I occassionaly have a bit of rice with ghee and Himalyan  (sp) salt both of which have a lot of nutriants - rice  has very little but it won't hurt in extreme moderation.  If you go without all sucrose and lactose and low fructose along with giving up all grains for about a months, your body will love you - but it is not easy! If you are desperate, you can do it.  You didn't ask, but for supplement, increase your vitamin Cand  start B3/ Niacin.

      Another suggestion - Google SCDLifestyle. Expensive but it will speed up the healing. Right now I am going through a "brutal" detoxification regime. Only a few more weeks to go. I am getting better. It takes a long time to heal the gut, but look at how long it took to get sick :-). I took Nsaids, birth control pills, and antibiotics for years (I'm 76) so the chickens have come home to roost. Once I am healed (by December I hope) I will continue with the Paleo diet, but with much less meat (I am a vegetarian). Of course with all life changes, the emotions are on a roller coaster. Lot of depression but a few highs.I don't mind as I am healing. Thank you Buddha, thank you god or whoever you are. Most of all, thank you Lucy - that's me :-). Love yourself and follow your bliss..L

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    • Posted

      You can use a silicon based cream or lubricant on the areas that chafe like you've mentioned above: behind the knees, inner thighs and inner arms where the seams of clothes are, where your bra rubs, ears etc. I still do this now and it really does reduce the chafing that causes the hives to rise. I use a good antiperspirant spray (not roll on) that is gentle on the skin where my bra might rub as it helps to stop the sweat when I get hot flushes.

      If you are prescribed cyclosporine don't worry too much. I know its a nasty drug with side effects (I was lucky and had none) but it worked great for me. Don't worry about doxepin anti-depressant it doesn't make me drowsy I still go to work and it really took me out of a dark place when I was bad because after only 10 days I was back to being me.

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    • Posted

      for an effective deoderant that won't add toxins to your body, you can use coconut oil, baking soda and a touch of tea tree oil. Cheap as and keeps you toxin free - espeically from the aluminun in antiperspirants.
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    • Posted

      In answe to your question - there is not enough research going on regarding CIU as it is seen as an irritation and not worthy of alot of research like heart disease and cancer. If you are in the US doctors may be more familiar with leaky gut syndrome as they were the ones to research it. In the UK doctors don't recognise it at all.

      Yes no alcohol, I left of it for a year until I thought it was ok to reintroduce a little. I still am more t-total than anything. I might have one beer or a small tot of whiskey but thats all. Yes you can eat rice and pasta. The leaky gut diet is designed for people that may not have hives thats why alot of foods they recommend to take are high in histamine like pulses, nuts etc. I went wheat free for a few months but I didn't abandon carbs.  Its easy to get wheat free foods like bread and pasta but be very careful using alot of 'free from' foods because some are full of high histamine ingredients. Its not easy to work out but its worth it in the end. Again goodluck

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    • Posted

      Hi Gingercat

      If you live in the UK you can get gluten free pasta from any supermarket or specialist shop that caters to celiacs etc. If you are in US there are outlets in towns for this kind of food I am sure.

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    • Posted

      The first time I noticed that I was breaking out when eating I would eat bread. So the next day I had another slice and it definitely was worse & so does beer. I have a lot to learn! I also am having stomach troubles. I had a gall bladder attack.... or so I thought, but nothing showed up in the ultrasound.

      When I went to my doctor he said "You know hives won't kill you, they just make you itchy" . Now I like my doctor but I wanted to slap him. I told him actually they did try to kill me 3x when my throat closed before and itchy is an understatement!

      I am going to start eating the right way today. I am sure I won't be perfect.

      I did switch over to natural deodorant this summer (after the return of my hives) but I ordered it online , I would like to try to make my own though!

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    • Posted

      I live in Thailand. No fancy processed foods here, but plenty of organically grown veggies. No grass-fed beef or free-range  chickens. I did Paleo for awhile but am on herbs, fruits and veggies now. Will go back to Paleo when my gut has healed but not nearly as much meat as they recommend since I am (was?) a vegetarian.

      I no longer take any modern medicines as they were why I got into this situation in the first place - too much Nsaids, antibiotics etc, all my76 years - and no antihistimines, which end up making everything worse anyway. I started the whole diet thing about 3 months ago and my skin has improved about 90% which reflects how my gut is doing. I expect I'll be in pretty good shape in about 6 months, but I will always have to be careful..

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    • Posted

      Good to hear but I am worried about coming off the antihistamines I am taking because when I did that before after my first bout of hives they came back a few months later but twice as bad.  If my hives continue to stay away for a few more months I will slowly try to reduce what I am taking. Wish me luck.
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    • Posted

      There are going to be challenges with this because I have a young teenage sin & a husband to feed also. They won't notice some things but now that it's football season, pizza is a Sunday treat that they won't want to give up (son uses dairy free cheese). Coffee....I love coffee, but I can love tea too. The way I feel is affecting everyone so they will understand...most of the time. I do think I am going to need to consult with a nutritionist because it is overwhelming to figure out what to take and when, on my own.

      I notice that when I eat beef, I have a lot of gut pain (I had a burger for dinner when i had a gall bladder attack) so I think I need to skip red meat for a little while. I can't take any NSAIDS now anyway because I am (we are) basically allergic to it.

      I buy mostly organic veggies, milk, eggs. Meat is harder #1 because it is so expensive and #2 I can't always get it. I go to Whole foods once a month and stock up on the best meat/chicken I can get. My fish I only buy wild caught. I am searching for local organic farms. I may try a delivery service for produce and even meat if I can!

      Good for you for doing this! I will be asking many questions along the way!Thank you ladies for all of the advice so far!

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    • Posted

      I do wish you luck! Coming off the antihistamines will be great for your stomach but if it's not an option then it's a catch 22. I have to fast for blood work tomorrow. I can't eat or take any medicine for 8 hours. I don't know what I'm going to look like or how horribly itchy I am going to be when I go in that office but they better take my blood fast!
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