Chronic (40+ years) Idiopathic urticaria/hives

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I’m enduring the latest round of this relentless unforgiving monster. I see a lot of people out there asking if it’s, this or that that causes triggers. During my lifetimes (it started at 11) experience I can say you are probably all correct. Reoccurring tonsillitis was my catalyst, along with regular antibiotics to clear the infections. I didn’t have my tonsils removed until 30 something by which time the surgeon said they as good as fell out they were that rotten. Over time I noticed rashes would kick off if I ate or drank too much acid based produce oranges, lemons, aspirin, jams, dried fruits, honey. Now I was reacting to antibiotics, some cleaning chemicals (swimming pool had to stop) and different medications.  I would also react if I picked up an infection of any kind tooth abscess, fungal infections etc. I did a little research (medical profession didn’t have a clue) and found if I could keep my salicylate levels down I would be rash free. But once my personal level had been breached, all hell would break loose. I would be covered in rash (pathetic little word for the damage it does) from the soles of my feet to the top of my scalp. 

Your whole body is alive with insane itchiness, I can feel oedema due to the tightness and there is a burning sensation. I feel battered and sore once the swelling subsides. My skin turns from natural to blue, covered in these welts, I feel cold and shake. You can feel various cycles of an outbreak on your body. This is just the physical cost. Mentally it’s soul destroying because nobody can do anything. Even the medical profession has given up. It isolates you because nobody else understands the impact it has on you, your temper, your looks, relationships, employment etc. But you know all this, because you’re reading this, right?!

i think in years to come they will find a connection between gut flora diversity and your immune system. 

In the meantime, if you get an outbreak, cut everything (and I mean everything) back to basics. Follow a low salicylate diet drink only water, speak with your GP if you are on any medications, bath daily in an Epsom salt bath (soak 20 mins) take anti histamines, and try using fresh aloe Vera on the skin. You will have to maintain this until ur salicylate levels are back to YOUR normal, which can be weeks/months then you can slowly and sporadically start bringing different foods back into your diet. We aren’t as medically advanced as we like to think we are. It sucks, but there it is. Good luck. 

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4 Replies

  • Posted

    Well said! Did you also notice any impact of hormones on your outbreaks over the years? 

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    • Posted

      Hi Siobhan

      i can’t say that I noticed any hormonal impact. My periods started ‘late’ I was almost 17. But they were as regular as clockwork, I had 2 healthy kids and periods stopped when I was 50. Hope that helps. If there is anything specific please ask away. 

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  • Posted

    I am very interested in your advice on this.

     I am only 3 months into this hideous condition and my symptoms are not as bad as some of the other sufferers on this site.  I can remember how it started though, and it all seemed to originate from my gut.  I had been on anitbiotics for a tooth abscess and then I (frankly) over indulged one evening (too much food and drink),  and the strangest things started happening in my intestines!  This wasn't just indigestion, it was a completely different feeling, my whole body felt like it was fighting something.

    So, to cut to the chase...I am completing an Urticaria Activity Score form and seeing a dermatologist here in France next week to discuss treatment for CIU.   They might put me on Xolair or keep me on the antihistamines.   I am on antihistamines daily at the moment, with varying results.  I can't ride my bike (pressure) and go out in the sun (heat) and I had my hair coloured on Saturday and on Sunday the rash got pretty cheesed off about it.

    I want to try and take control of this condition myself if I can, but I am getting lost in the copious amounts of advice on the net.  Your advice rang true with me, however, as I really think my condition stemmed from my gut.  I have a good, varied diet, but I'm not a fanatic.  I drink alcohol, but never drink fizzy drinks or juices, it's alcohol or water!   I love a drink but will give it up at the drop of a hat to get rid of this.   I can look up what a low salicylate diet is, but could you point me in the right direction?  What do you eat when you get a flare up?   And lastly, how much Epsom salts should I use the bath?  

    I really want to try and avoid the cocktail of drugs that I see people having to take, but I can completely understand why they grasp at any straw they might be offered, and I would never say never.   It's evilness lies in it's random attack and varying degrees of severity, it's debilitating and hateful and I've got to fight back.

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  • Posted

    Hi Cotty

    what foods can we eat?  I want to try to do this naturally to try to get into remission again!  I'm 66 and this is my third go around in my life and these hives are not leaving. I am on low dose of Prednisone 1mg and Allegra but now I have been starting to breakout again so need to up Prednisone again then slowly go down.  Dr just suggested trying Xolair injections again but they did not do well on me so other doctor stopped injections ......good thing as my hair was falling out.........getting concerned about Prednisone not working for me although it is a very low dose.  So I want to try healing my body naturally and feed it right.  Any advise would be great.

    wendy

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