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My experience with chronic urticaria. I hope this helps someone.

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StudentMidwife
StudentMidwife

Hello,

Just wanted to share my experience of chronic urticaria and angioedema in the hopes it may help someone else. Last October I started to get swelling around my eyes. It started in one eye and quickly moved to another. The doctor put it down as blephartitis and gave me steroid cream which initally helped. Very soon after I started to get urticaria all around my eyes and down my neck. they were very painful and it felt as though some one had thrown acid on my face. It was most painful around the eyes and very unsightly. It was nearly impossible to cover with make-up. When the flare up would fade it would leave hyperpigmentation until the next flare up (as many as 3 a week, each lasting a solid day). Sometimes it was accompanied with the angioedema and other times not. I was refered to an eye doctor who said he was unable to help. I was referred to a dermatologist (still waiting for that appointment!)  I went back to the doctor over and over asking for various blood tests but was refused. Theywere convinced it was an allergy but I felt certain it was not. Nothing in my situation had changed. It was really affecting mylife negatively. I never left the house if I could help it. People at work began to think I was being abused due to the swelling and hyperpigmentation around my eyes. In March I ent back to the doctor and demanded some blood tests, for something, anything! She decided to humour me and ran some blood test. The Vitamin D test came back at a 9. The normal range is 75-150. A quick google search shows that vitamin D plays a role in chronic urticaria and that supplementation is a successful treatment for many people. I have been on the prescription strength Vitamin D for 2 months and as my levels slowly rose the severity and frequency of the urticaria have lessened remarkably. I have not had an outbreak for over 2 weeks now which is incredible for me. If this is not an avenue you have yet explored it is worth having the test. If I hadn't pushed for the test I would still be suffering and may have done for years.

2 likes, 12 replies

12 Replies

  • wendy62425
    wendy62425 StudentMidwife

    Posted

    Hello!

    thank you so much for sharing.......I heard about the Vitiman D as well!! I hope many will read this ....I have shared this on one of my posts when someone else posted!  So important to keep each other informed! Again....Thank you!  I am so glad you are doing so well!! 

    Have a great day!   A day without hives IS a great day!

    Blessings,

    Wendy

  • Diotima
    Diotima StudentMidwife

    Posted

    Thanks for your account StudentMidwife!

    I had a similar experience, with pretty severe angioedema and hives, though they were occasioned initially with an allergic reaction (true allergy) to a food.  My vitamin D level was found to be very low (15), though not as low as yours!  I've also been taking supplements and will be tested again soon.  No more angioedema, though still some pressure hives.  Those are reputed to last quite a while, alas.  But overall, my situation is much improved from remedying the vitamin D deficiency.  I previously suggested to folks here to be tested for that. (Two good recent studies show that supplementation can help with hives, if people are D deficient.) 

    The only question I have is with what is a normal range. Though not ideal, I thought that normal begins at 32 and above.  Most places I've consulted think a score above 50 is good.  There is some question about whether too much D is dangerous, (and it's stored in fat), but we certainly need to remedy our deficiency through supplementation.

    • StudentMidwife
      StudentMidwife Diotima

      Posted

      The range in the UK is deifferent from the US, as the unit of measurment is different. My 9 in the UK would be a 4 in the US I think.
  • wendy62425
    wendy62425 StudentMidwife

    Posted

    Hello!

    thank you so much for sharing.......I heard about the Vitiman D as well!! I hope many will read this ....I have shared this on one of my posts when someone else posted!  So important to keep each other informed! Again....Thank you!  I am so glad you are doing so well!! 

    Have a great day!   A day without hives IS a great day!

    Blessings,

    Wendy

  • alonzo04458
    alonzo04458 StudentMidwife

    Posted

    Wow I'm an avid believer in God I had no answers to this and you may have just answered the question I have been wanting to know. When I had my blood test done my vitam d was lower than 9 I was put on pills but stop taking them. I am glad you are feeling better and I hope one day we come up with a full cure and more physicians who can detect it because anti histamine are not the solution
  • Diotima
    Diotima StudentMidwife

    Posted

    Hey Alonzo, 

    Please don't stop taking the vitamin D pills that the doctor prescribed!  Below a 9 (or yikes, a 4 in the UK?) is dangerously low, and can affect other functions besides the immune system.  The normal range is way higher!  

    (Needless to say, an adequate blood level of D isn't the solution to everyone's urticaria, but the lack of it can be an important predisposing factor.)   

    Best of luck,

    Diotima of New York City

  • Diotima
    Diotima StudentMidwife

    Posted

    p.s.  I don't think anyone here mentioned hist-tame (or equivalent) pills, with diamine oxidase that adds to your own supply.  Taken right before you eat something with relatively high histamine level, it can counter that histamine and allow you to occasionally eat stuff that would be troublesome otherwise.  They're expensive and made from pork, but really can be a relief for those of us for whom it works, allowing us to eat a wider range of foods without a reaction, or a more minor one than otherwise.  (Just a thought-- I'm not recommending it for anyone who is suffering seriously from hives at present.)
    • alonzo04458
      alonzo04458 Diotima

      Posted

      Yeah I had serious reactions to spicy food which loved to eat as a juvenile due to my Caribbean culture. So missing out on the spicy foods hurt me a little but I suck it up and eat good. Also I was prescribed 50,000 iu of vitam d3. It was the only abnormality in my blood work also so hopefully I can get a better as you did. I have wide spread chronic urticaria. Any shift in weather or emotion causes a reaction. I have hives all over from face to back to arms but thank you for your help God bless and good luck
  • StudentMidwife
    StudentMidwife

    Posted

    I should have also said I stopped taking my once daily Allegra after I had been taking the Vitamin D for 6 weeks. I had a brief flare up then but it quickly settled down. I was not happy taking the Allegra. Even though I took it before bed I felt very dopey and I put on 8 pounds in the 2 months I was taking it daily. Since I've stopped the weight has nearly all come off.  The antihistimines are a help for the urticaria but be no means a cure.  I don't think this will be the absolute solution for everyone with urticaria, but it's certainly worth exploring if you haven't yet done so. 
    • alonzo04458
      alonzo04458 StudentMidwife

      Posted

      See I have been diagnosed with urticaria by two doctors but none of the antihistamine work. But I've been feeling better since the vitamin d and the winter has left (at least in Florida) but with the heat has come super hives and anhidrosis. I just filled my prescription again today and been reading research on vitamin d deficitany and seen that urticaria is common in those deficient people so hopefully my levels rise and I come back to normal
  • valerie10734
    valerie10734 StudentMidwife

    Posted

    Hello-

    I wanted to briefly share my experience and hope it will help others. I've had chronic urticaria on and off for 10 years and have had every allergy test under the sun done several times and every test showed I was not allergic to anything. I had an appt. scheduled with a doctor who specializes in chronic urticaria but then I read vitamin D may help. I took one dose of vitamin D3 and a few hours later I noticed that my itching had subsided. It seemed to good to be true. Within 2 weeks my itchy red inflamed hives were gone. It's been over 2 months and I haven't had any hives whatsoever. I just returned from my dermatologist and told her about my experience and she questioned my story. My experience may be unusual but I wanted to share and give others the information that helped me.

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