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Hives (Chronic Urticaria) Going out of my mind now trying to work out what is wrong!!

Posted , 12 users are following.

kelly06648
kelly06648

Hi, I am a 23 year old female, from Ireland but moved to Glasgow for a job last year. Was completely normal, healthy and happy no previous medical issues until 01/10/15 when I got the flu vaccine through work.

I immediately suffered a local reaction and was told it was nothing to worry about and I will be ok. Since then I have been experiencing hives daily and angioedema on occasions. There is no pattern or logic to my hives and swellings. It has been 5 months now and not improving. I am getting more and more low with this horrid condition. This is a call from help!!

I have had allergy tests for egg & dairy - negative.

Bloods all "normal" except elevated white blood cells.

Been tested for liver & kidney function- normal as well as thyroid function which is normal.

Had test for coeliac which is also normal this was the immunologists last appointment.

They say it is stress, but I am not stressed, I no stress and this isn't stress or how my body has coped or reacted before.

I know the flu vaccine has caused an upset in my immune system, but I don't know what it is or what else to do at this stage.

I am going back to GP in 5 days, I am asking him to test vitamin D levels, test for stomach ulcers/h.pyloric and to test for lupus and common allergies (mould & dust mites) clutching at straws.

Any help is much appreciated!!!!

Kelly

3 likes, 24 replies

24 Replies

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  • wendy62425
    wendy62425 kelly06648

    Posted

    Hi Kelly

    i am so sorry to hear you too are struggling with chronic urticaria!  Ask the doctor about the possibility of "leaky Gut".  I know how frustrating it is to be tested for so many tests and come back normal.  This disease is very difficult for some doctors to treat and diagnose.  What medications are you taking ? There is a monthly injection that works for many but not for some (like me).  It's called Xolair.  

    My hives this past year were severe so my specialist put me on Cyclosporine and very slow Prednisone taper to get me to be hive free.  A friend of mine was able to go on Cyclosporine for a time and slowly went off that and has been in remission!  She is in the UK and had a great doctor!  Mine was probably brought on due to stress effecting my immune system and possible "leaky gut". I had this two other times in my life and lasted two years each time but was able to kept them under control by taking antihistamines....I am now in my 60's so not as easy to treat this time.  You have your youth on your side!

    Hang in there!  Please keep us posted.

    Best

    Wendy

  • lorraine34338
    lorraine34338 kelly06648

    Posted

    Hi Kelly

    Wendy is right and the specialist I used in the UK is called Dr Sabroe at the Sheffield Hallamshire Hospitsl, she is a dermatologist that specialises in chronic urticaria of all types. Try to get you GP to refer you as I'm afraid GPs know very little about the condition.You may not have thought you were stressed but moving from Ireland to Scotland even if you were happy doing it can be stressful to your body, and the flu jab may well have been the trigger for your immune system to go into overdrive. Food wise keep to very fresh meat and fish, no shellfish, no processed foods like sausage and smoked meats and hard cheeses. Use Very fresh veg and fruits, but avoid citrus, strawberries, don't have too many nuts or pulses (beans, peas). Keep off wine or any alcohol until you have the hives under control. Please, please get that referral to someone who has studied urticaria otherwise it might take longer for you to go into remission. I am still taking a lower dose of fexofenedine and loretidine antihistamine because I am still worried my hives will come back. We are all sufferers and can sympathise with you. Good luck

  • lorraine34338
    lorraine34338 kelly06648

    Posted

    Kelly

    Forgot to add keep away from NSAIDs which are anti inflammatory medications like ibuprofen, aspirin etc not good for hivey people, antibiotics also but sometimes you have to have them don't we? It's unlikely you have the allergies you want to be tested for and if you are having indigestion like symptoms there is a test for helio-pylori bacteria in your digestion system which used to be referred to as ulcers but isn't and there is a really easy cure for it once you've established you have it. Again you need to see a specialist so whe you see your GP next ask for one.

  • kelly06648
    kelly06648

    Posted

    Thanks Wendy & Lorraine,

    I have been on steroids several time, IV drop when the angioedema gets out of hand. As for antihistamines, I have also bee on all of them... Currently 360mg fexo 2xdaily, cetrizine, periton around night/when not working shift, Zantac and now most recently singular!

    No logical link with this condition, can safely say I was stressed today and I can't find a hive for looking, but the next few days when I am completed chilled out I can play dot to dot no doubt.

    It's strange but hopefully it "burns out" quick. My GP doesn't know much but he is doing all the right things, just taking his time and needs a gentle shove in the right direction.

    At least I am not the only one, wish more people knew of this condition. It seems so much more common and yet no valid reason or cure.

    Yea I have youth on my side but with 6 sets of steroids in 3 months I have the guts of 2.5stone on, which is depressing in itself never mind popping pills to delay the evenitable. Hives!

    Cheers 👌🏻

    • lorraine34338
      lorraine34338 kelly06648

      Posted

      Kelly, I'm really worried about the number of antihistamines you are taking and the mgs of fexofenedine it's really extreme and both specialists I saw would be alarmed at this. They both said I shouldn't have to take more than three in a day and this was when I was on cycloporine. It's obvious you like and trust your GP but however you feel about him giving you copious amounts of steroids is going to damage you. You should be taking calcium with vitamin D to protect your bones. My friend on this site is about to start on this and is a bit annoyed she wasn't put on it as soon as she started prednisone. I stress again you need to see a specialist on urticaria. Also if you have angioedema urticaria this needs even more specialist treatment. I like my GP but I wouldn't have trusted them with my urticaria and they obviously felt they didn't know enough as they did two referrals to specialists on this condition. Please think about this.
    • amey793
      amey793 lorraine34338

      Posted

      I am on 4x fexofenadine a day plus ciclosporin & was advised this by dermatologist x
    • wendy62425
      wendy62425 amey793

      Posted

      Amey.....how many mg are you on with Cyclosporine?

      wendy

  • kelly06648
    kelly06648

    Posted

    Thanks for the concern, but I have been to many specialists now. I have thrown money at this condition and nothing is working for me. I am now convinced the flat I am living with has mould or something as the Halls are bad and breathing in these toxins could be causing the histamine release. I need to keep searching for a cause, I can't take a back seat and just accept this.

    It is also unrealistic that I will get to see that specialist in England as the NHS is separate.

    • tonello26977
      tonello26977 kelly06648

      Posted

      Have you tried living in a hotel or at a friend's for a few days? It's what I did when I was trying to rule out mold and dust mites. As soon as I arrived showered, put on newly bought clothes and used my friends towel. Didn't help but it helped rule out possible allergens from my home
  • kelly06648
    kelly06648

    Posted

    I'm going home for 10days at Easter so hope to rule it out then. Totally convinced though as when i have a 12hr shift at work my hives aren't as bad the next day as after an 8hour shift.
    • wendy62425
      wendy62425 kelly06648

      Posted

      Hi Kelly

      How are you going with the hives? Are you still breaking out?  I hope you are getting better.  Getting close to heading home for Easter!  Keep us posted...we would all love to know how you are.

      best,

      Wendy

  • nadia24241
    nadia24241 kelly06648

    Posted

    Hi Kelly, I too suddenly developed this horrendous thing out of the blue last November. Started with itchy hives which got worse daily and had numerous episodes of facial swelling, throat swelling and pains in chest. Saw 2 private consultants plus gp. Last doctor was great - expert in CSU. Prescribed 4 x 189mg fexofenadine and 2 x 10mg Montelukast - knocked it out straight away. Tranexamic acid for the angiodaema but I haven't needed to take that. No swellings at all for last 6 weeks. One or two hives on 2 occasions when I deviated from low salicylate diet. Had test results yesterday - no allergy but deficiency in vitamin d and borderline auto immune disease so he put me on 1600 units of vitamin d and did some more bloods. My doctor trained at urticaria clinic in guys and st Thomas London but is in cardiff. Heard that adrian morris at the Surrey clinic is also recommended. I'm not healed but at least it's under control I was literally covered and could not go out because of facial dwellings and the burning itch was horrific but it's gone for now. Hope you find some relief very soon - don't give up x
  • kelly06648
    kelly06648

    Posted

    Pretty much taking it day by day. But just finished a set of nights and have hives all over, none on my back or my lower leg as usual but particularly bad on arms and torso. Not itchy after exercise which is great and I had 10clear days when on my period so I think mine has a hormonal cause.

    Tablet wise I am on cetrizine 20mg AM and PM and trying not to take anything else as I find the tablets do very little for me after 6months.

  • nadia24241
    nadia24241 kelly06648

    Posted

    I also believe hormones affect this as when I first developed it my bloods showed that I was peri menopausal so go prescribed HRT. I also stopped taking progesterone pill a few weeks before it first started and was also quite emotional and stressed out.

    Am due for period in a few days and have had one or two hives. Woke with one this morning on my buttock. However I did eat a cake with favouring and additives and indulged in wine yesterday evening so not surprising really. My doctor said that urticaria does ebb and flow so will be worse at certain times and may break through the meds now and again. He also said it's always worse for sufferers during the colder weather. I do hope everyone gets some relief once the weather improves.

    • lorraine34338
      lorraine34338 nadia24241

      Posted

      Hi Nadia, I was on HRT tablets for over 10 years and it was when I came off it 2 years ago that I started with urticaria. There were other triggers too though but oestrogen changes is a biggy. You do need progesterone to protect your womb lining. For me it was heat, my hives got worse when I was hot and hot flushes did not help! 
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