chronic spontaneous urticaria or angioedema or hives welts

Posted , 6 users are following.

I started by going to the ER for swollen lips and eyes along with welts / hives all over my body. I'm not big on doctors or for that matter ER rooms. Two days later after my ER visit I visited my PCP and I was referred to a specialist. The allergist diagnosed me with chronic spontaneous urticaria or angioedema. I was given nothing but a epinephrine pen and told that there is no cure nor anything I could do to help myself. I requested testing for everything in the world via blood tests, std tests, infectious disease test, and everything came back negative. I was kind of hoping for something to come back positive so that I would know what was wrong although that wasn't the case.

I'm not the type of person to tell everyone my business although hives aren't anything you can hide! While at work a woman friend looked at me and could see by my face that something was wrong. She questioned me and I told her. She stated that she had the same thing occur approximately 4 years ago and that she knew what I could take to stop the hives. I felt very exited. She also stated that after four years it still exists.

This is what I started taking that ended my hives / welts:

1) Famotidine 20mg, 2 tabs twice daily (40mg twice per day) (OTC). 2am and on 2 pm.

2) Zyrtec (cetirizine) 10mg, 2 tablets daily (OTC) 1 am and 1 pm.

I purchased both of these pills from Costco although I'm quite sure you could buy them anywhere.

For what it's worth I'm not a medical professional or in the medical field at all. I searched the Internet when the doctor gave it a name and could find nothing, I was very sad. I hope this works for you although I accept no responsibility for the outcome in your personal outcome.

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12 Replies

  • Posted

    I'm so pleased that the mix medication has worked for you.

    Sadly, for me, since my urticaria started 21 months ago it has made me allergic to anti histamines!! I used to be able to take them for hayfever etc but as soon as I take even the smallest dose now I get completely covered, head to toe, in hives for three days! It took 18 months to get the dermatologist to believe this with various different anti histamines to try and finally a skin biopsy!

    Today I go back for my first Xolair injection and am keeping everything crossed! 21 months of daily hives ( hands arms chest covered) is getting tiring and depressing!

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  • Posted

    Hi Dustin530

    So glad to hear this has worked for you, it's seems by reading all the post on here what works for some Ppl don't work for others and vice versa.I was diagnosed with chronic idiopathic urticaria and angioedema, I have underactive thyroid which is v unbalanced ATM and I'm blaming thevsudden change in my meds. I am still searching for my successful cocktail. At the minute I am taking 150mg Ranitidine (which similar to the famotidine u are taking, it is also a h2 receptor ) and 10mg cetirizine. I take both these tablets 4 times per day. I'm on steroids prednisolone but they are due to finish on tuesday, I have been weaning of those over a week now. Started on 8 a day for a week then each day taking one less. The last time I took these steroidsthe hives and angioedema came back worse when the course was done but I'm hoping weaning of them and the other meds will keep itchy bay. It's a horrible disease to harvest noone can understand unless they have it, it is constantly in my head, I wake up in middle of night dreaming iv hives and getting up to check, I think this is because I'm so worried wen steroids stop on Tues that it will come back. Hanneke have u tried any h2 receptors? Or iv heard Ppl on here mention alkaline drops in water, anything is worth a go.

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    • Posted

      Hi Mazanne

      I'm not sure that I have tried any H2 receptors ... I've been given various things!!

      I did try the alkaline drops but they made no difference. I've changed diets, cut out alcohol (gasp) but nothing.

      So bizarre that 21 months ago I woke with what looked like mosquito bites on my wrist that just developed daily and stayed ... Such a strange condition!

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    • Posted

      U shud ask abt them, worth a try. Yeah I was the same just wakened up one morning with hives on thighs and from that just spread and got worse and swelling as the days and weeks went on. Iv been referred to an immunologist but the waiting list here in n Ireland is over a year.
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  • Posted

    Where do you live Justin because this matters? If you live in the UK get a referral to a specialist in urticaria.  If you live in the US you need to research who is a specialist in this field. If you live in Europe I'm sure you can get a referral to a specialist in the field if urticaria. Just don't give up I'm free of it due to very good help from specialists in the UK.
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    • Posted

      I didn't have angioedema just chronic spontaneous urticaria. Wendy who is also on this blog also has angioedema and lives in the US and like me was put on cycloporine whic is an immune suppressant. I was only on 100mgs for six months but Wendy was on 200mgs plus prednisone. She is now in remission and coming off both cycloporine and prednisone. I have been off cycloporine for quite awhile now. I don't think we ever totally get rid of urticaria but we can make it go to sleep. I had a problem with particles of food escaping into my small intestine causing my immune system to go into overdrive. A nutrionalist helped me sort this out and I think this along with the meds got it under control. There are specialists in the US but you have to do the research and your medical insurers have to agree to a referral otherwise you have to pay yourself I understand. I wish you luck.
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  • Posted

    Please HELP!!! For the past about 3 years I've been trying EVERYTHING! This blog has been more helpful than all the doctor visits! I have CHRONIC urticaria and CHRONIC angioedema. All day... everyday...I cry, itch, scratch, and get depressed....I mix 1 Zytec a day and 2 Benadryltabs every 4 hrs daily. I feel my lips getting started right now as I type this. I'M MISERABLE...SERIOUSLY! I've even  been checked for Lupus. I'm tired........ 
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    • Posted

      Hi ya I am in remission over a week now touch wood!!! I was put on prednisone 40mg per day for one week, along side that I took 40 mg of Ranitidine (4 10mg per day) and 4 cetirizine as well. When the week us up I cut the prednisone by 5mg everyday until I wasn't taking any. I still take the rest,tho I'm going to start and cut Ranitidine to 3 per day from next week. It has worked for me. Wat I Wud say is don't just stop the prednisone u need to gradually cut them down, I was on them before an an Dr didn't advise me to gradually come of them an it came back really bad. U shud give that Wee cocktail a go.
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