16 months of chronic spontaneous urticaria and no signs of improvement. Ready to curl up in a ball.

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I had a sudden outbreak of urticaria in October 2014 when I was 43.. It was so severe that I had blisters upon blisters and eventually open sores. The hospital originally thought I had Pemphigus.

The condition has hardly improved over the last 15 months despite being on 2x 180mg of fexofenadine and 2 X 10mg of cetirizine tablets per day.

The medication has caused chronic fatigue, lack of bowel control and my immune system must be really struggling because I catch anything!! The upshot is that I am beginning to get an irrational fear of germs- every time I go out I seem to get sick! I'm also aware that I have diarrhoea so don't want to go far. I also look like an Ebola victim and am very conscious of people staring. For this reason I hardly leave the house.

The condition itself causes severe blistering and scarring. The itching can be unbearable- and painful. I even scratch in my sleep so I haven't had undisturbed sleep for months and I wake up to my sheets covered in blood spots. My joints ache and I have very pronounced positive dermagraphism. I often get blisters under my eyelids which causes sight issues. I also get blisters in my throat and on 2 occasions have needed to call out paramedics because it caused swelling in my airways.

Despite this I have been referred to dermatology who are treating my condition as not life threatening and have been told that they've exhausted what they can do to help me.

Prior to this condition I was diagnosed with chronic asthma- July 2012, hay fever June 2010 and an under active thyroid in 1999. I'm taking 120mg of levothyroxin for the thyroid:

I strongly believe that being treated in dermatology is only looking at the symptoms and not addressing the cause of this issue.

I am depressed. My life has stopped. I am now, as I am everyday, sat on my bed. Confined to living a solemn and sedentary existence. I feel lazy. I feel worthless. I cannot socialize for fear of being in public. The pain is shocking. I cannot imagine the toll this has already had on my health both mentally and physically; the physical pain of an outbreak seems an entirely unnatural and extreme stressor for my body to have to deal with on a daily basis.

This is such a debilitating condition and yet because it's not life threatening in itself it seems no one wants to know. Why is so little known about a disease with such devastating consequences?

I need help. Prior to this happening I was a senior chartered accountant in a huge international firm. Now I am reduced to slobbing around the house. Sleeping 18 hours a day and living in fear of going out or even meeting people because I am worried about getting germs, people staring at my huge blisters oh and there's always a good chance I'll shut myself! this is a life I do not want to lead and will not continue to lead if I do not witness a significant change in my circumstance. Does anybody know if any research is being done into this condition?I am very willing to put myself forward as a test subject. This condition desperately needs to be understood and I will do all I can to further research into this field.

1 like, 42 replies

42 Replies

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  • Posted

    Just doing some research and I discovered this thing called autologous serum therapy. It's a cheap method used in the third world where drugs like Xolair, cyclosporine and antihistamines cost an arm and a leg. Basically doc takes your blood, centrifuges it and injects the clear plasma into you im or subq. Basically desensitizes you after a few injections. I'd put a link but it would get moderated. Just Google " blood injections hives" and the research articles come up
  • Posted

    Hello I have just came aross your post as I was looking for answers. Sorry to hear about your problems.  I have recently been diagnosed with urticaria I dont know what has caused it and my rash (pimply and looks like blemishes) has been here for 8 days now, not improved at all, is that normal for urticaria do you know?

    Thanks.

  • Posted

    Hi

    am in the same situation has you and I find that when I go out in the sun it make my chronic urticaria worst, anything to do with hot and cold also irritates me to extremes, I also get swelling on my face, throat, hands and feet, I also take fexofenadine but only 1 per day but I take 4x certirizine which don't do nothing for me at all, but if I take 4x prednisolone steroid tablets all my urticaria clears up, my skin goes down, my swelling goes down, it's like I ain't never had the disease but the hospital won't provide them constantly because they can lead to other problems. 

    I just try to get everything fresh, no freezer food or pre made food, caffeine can cause irritation to urticaria and salt causes me to get blood blisters in my mouth which make if difficult to eat, I fully understand what your going through and I get depressed has well when things get unbearable but try your best to keep your skin protected from the sun cause it's the sun that causes the blisters, hives and welts and also swelling 

    • Posted

      Hi, I have been in remission for about 6mths after two bounts of it but I didn't have the same urticaria as you. There are different forms of it and yours is affected by cold and heat and you possibly have angioedema as your face swells. Having steroids does help but unless you have a very long taper down of the dose you may get whats called rebound, that it comes back sometimes even worse.  If you live in the UK ask your GP to refer you to a dermatologist that specialises in urticaria, not all do although some do try to be no-alls. My specialist dermatologist realised that I needed to see another specialist and referred me to an urticaria specialist dermatologist called Dr Sabroe at Sheffield Hallamshire Hospital. Do try this if you can. If you live outside the UK ask for a referral to an urticaria specialist and don't take no for an answer. I was placed on a drug called cyclosporine 100mgs for six months and I gradually came of it after this time and  this worked for me alongside antihistamines.  I still take a lower dose of antihistamine as I believe it might return if I didn't. Good luck
  • Posted

    One more thing....

    they say say that urticaria can last up to 24 hours which is a load of rubbish!

    urticaria can last unfortunately up to TEN YEARS!! They say that at the end of the day it just has to burn out your body lol that was what my dermatologist told me when they ain't got no answere

    yes it can be life threatening in my eyes has I am a chronic asthma sufferer but I know the difference between a asthma attack/cough and my throat closing up and swelling.  

    Check out out this link below 😊

    https://patient.info/health/chronic-urticaria-hives

  • Posted

    I've been dealing with the same thing it started when I got a load of sand to put in an above-ground pool. I was spreading it out out in the yard and it's and my kid plays in sand it can't hurt right Rob I had a sore on the bottom of my foot underneath my little toe like where the toe goes to the foot and apparently everything can enter those points and they did. there's an animal in the backyard a dog apparently the dog had hookworm there are different stages of worms so you may be tested for a certain stage such as in the digestion but you can have them in the skin so they may not be showing up in different points and so if they're testing in the wrong places you'll never know that you have it everything you described I have been through the store's the digestion this thing has nearly made me crazy it lasted three years it's still ongoing I have gotten rid of it on occasion. stromectol or Ivermectin and doxycycline now the issue is is sometime later they come back well here's the deal if you have anything in excess in your body because the house is the body and so when they say unclean conditions it doesn't mean necessarily the place you live in it means the body that you're in because I'm sure you've heard about parasites removing radiation that are actually given to people that have had chemo and radiation to help get rid of the radiation and that's what parasites do they retracted and they thrive in bodies that have too much of something such as sugar radiation cortisol so if you have a lot of anxiety which the disease alone will create anxiety because guess what you're not sleeping are you and all those chemicals we make in our sleep those are necessary to keep these things at Bay. All humans have parasites are you mean system keeps them in check we all have a parasitic load so we don't even notice it if we're healthy when we're not healthy however this is when it can go crazy because cortisol is generated when you're stressed out when you have anxiety among other things naturally also sugar so if you drink alcohol if you're you know ingesting too much unhealthy Foods things of that nature if you're not exercising and sweating it out well that's when they set up shop they Thrive off the energy in our body which energy is going to be anything that they can break down and drive off of which is going to be sugars cortisol and all these different chemicals so with that changing the diet eliminating sugars working on your thoughts I know this sounds crazy but working on your thoughts because our thoughts are what create chemicals in the brain if you are nervous you make cortisol they love cortisol let me just tell you I'm an anxious person have been all my life and that is been while this has been the devil when I get extremely nervous or go through a very stressful phase it kicks right back in because you never fully get rid of the stuff nobody does doctors don't look into the stuff I don't think very much anymore I don't know how to treat it you can be tested for it but you can't find it all the time they'll do it digestion test but like I said it's not always there these things enter the body through a break in the skin or if you have kids and you change diapers kids are outside and they're playing if you bite your fingernails oh my gosh keep your fingernails clean because eggs get under the fingernails we eat we touch our food we scratch and it gets in our skin now this is a complete cycle it can go through the lungs in the trachea you'll have a cough you have you can get pneumonia from this it gets in your digestion and gets in the blood. and it could be hook were making me pinworm it could be whipworm it could be any of these things and again there's different phases of these there's a time to get in your skin there's the kind that moves that digestion and they're all different there's two kind of get under your fingernails and they look like a human hair just a little bit heavier so you won't notice it you'll think it's your hair but it's not so far this is all I found to work I did all this research on my own I even ordered the antibiotics and everything from overseas because I couldn't talk to doctors I get to nervous and naturally when I get nervous it gets worse so I did all of this on my own and actually got it to go away also you can use things like clove oil oregano oil but it burns like the dickens. anyhow that's where I'm at with it sorry if it's going to all over the place are hard to follow

  • Posted

    15 months is a long time of no results. Either the issue is with the medication or its with something you are doing or not doing. Its important to have a more profitable medication and try an alternative prescribed medication.

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