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

Posted , 12 users are following.

justine_23155
justine_23155

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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  • renni01775
    renni01775 justine_23155

    Posted

    Hi Justin and tonello,

    I live in India and have radiologist, pathologist, urologist and gynaecologist among my first relations. I kept juggling between various dermatologists for 3-4 years and was so fed up of my hives, steroid creams and antiallergics that I just gave up on it and rudely told my sis in law that I don't want to be a lab rat when she offered me to try the dermatology department in her hospital. That was the end of technical medical intervention for me.

    Believe me , I am much better off today. It may sound very easy going today but the flare up period of nearly 5 years was like hell. My symptoms go back to 20 years and slowly progressed from simple allergies to vigorous conditions. This is a skin condition only because it appears on the skin otherwise it has underlying reasons elsewhere. The triggers may be different, for me digestion and depression came out as the strongest. For two years all I could eat was a veggie, wheat bread, yogurt and a legume, rest, especially high protein like meats, nuts, cheese and carbs produced immediate itching, rashes and blisters. It was so quick that I could be used as a protein identifying apparatus. I was so put off, I just didn't want to eat at all. But now I can eat everything though in lesser amount and only during day time but it is a relief to know that even of I get some blisters, I would be able to get out of this vicious cycle.I found my condition and it's management on my own. All that the doctors in my family could say was a sigh and that they knew people having similar condition as they don't have a cure in medicine so I suppose now it was even easier for them as there was no guilt attached in being evasive. But I thank god who gave me patience and insight to explore my allergies and find ways to manage them.

    My prayer goes for those who are still facing the similar conditions and frustration and depression.

    • wendy62425
      wendy62425 renni01775

      Posted

      Hi Renni

      I am so glad to hear that you are good. Did you get better by eating lesser amounts each day?  Is that how you got better?

      thank you

      Wendy

    • justine_23155
      justine_23155 renni01775

      Posted

      Thank you Renni. I guess I feel like a headless chicken running around trying any potential cure I can. I don't think stress helps and as each treatment fails my stress increases and my condition gets worse- it's a cycle! But this forum has helped so much and given me the strength to try and tackle this.
    • renni01775
      renni01775 wendy62425

      Posted

      Thanks wendy and justin. It took me a long time to realise that food was one of the causes. I was never a too veggie person. My diet mostly comprised of high proteins. I noticed that if I ate them in dinner it affected me much more but even lunch did not spare me a reaction so I was so distressed that I left them altogether for nearly 2 years. I tried choosing food that was light on stomach and could be digested easily. No meats, cheese, nuts or legumes. I had already developed allergy towards egg. Carbs other than pure wheat also tend to produce blisters. I hated eating out or eating at all but never skipped any meal, just replaced the regular ones to homemade yogurt, fruits or veggie. I also stick to timings for my meals and sleeping hours now. Stopped taking any snack between meals and if I do I take lesser at meal time. I found that the best time your stomach can have in digesting is breakfast so you can have your fill. Lunch is ok and dinner is lesser then your fill. The whole point is not to feel heavy or allow indigestion/gas in your system. After eating if you keep moving around for a while rather than sitting or settling down, the food tends to shift down and you will feel much lighter. This helps tremendously in reducing the itching and blisters that we get at night.I still get some itching in genitalia during night. Again if the gas is passed it immediately goes away or I just wash it off with water at room temperature and it is easier to go back to sleep without much scratching or hurting. I only skip my meal when I have eaten earlier and my stomach still feels heavy. You tend to know your amount of food after a while when you get to know where you have to stop before your fill.

      This gave me positive results and positive mind too. I could do what these qualified doctors could not. It is a boost to your mind and I can't say but this feeling of managing and cheating on my hives may be producing some feel good hormones. I feel more spirited, have stopped panicking about scratching. Few months back, I took some probiotics which improved my digestion tremendously so I take it 5 days per month Again vitamin e is good for skin and hair. It is an oil in capsule form which is generally prescribed to females above fifty so may be l needed it early due to excessive dryness and scaling so I take it for ten days coupled with generous application of oil on my hands at night as well as during day time when I could keep them idle for at least fifteen minutes. Oil because creams seemed just not creamy enough, oil tend to stick longer. Can you believe my badly cut hands with sore blisters and nasty scars are clear, soft and tender today. Though I do keep getting into itching and blister cycle here and there but I am at peace that it will eventually go away the moment my tummy gets rid of gas and indigestion. Eating less at night also protects from heart burn or acid reflux.

      I hope this may help you if your triggers are similar. Even if they are not, please try not to panic and patiently keep watching your diet for them. I am sure you would be able to overcome this condition. If I can, you can also do it. Be free to ask anything.

      Good luck.

  • heather94146
    heather94146 justine_23155

    Posted

    I feel awful for you! Are you in the US?

    I personally don't think dermatologists can help either. I love when the docs say it's not life threatening. Spoken like someone who has never experienced this. It is life threatening because your throat can close at any given time and it is life altering, that's the part they really don't comprehend. Do you have hive or fluid filled blisters?

    • renni01775
      renni01775 heather94146

      Posted

      Thanks Heather. I am from India. I get both kinds plus rashes appear randomly even on a slightest irritation. What bugged me most was that when I showed my scaly bleeding hands to dermatologists they all diagnosed it as eczema, none of them asked any thing about the other symptoms. I was naive and uninformed. Now when I look back, I had tendonitis, depression, over weight, later thyroid and all along urticaria. Nobody tried to link these though they seem to be interconnected. Not even doctors in my own family tried to take that extra step to do some research.I suppose the doctors today are either too burdened with patients or too busy minting money that they just don't need to bother with diseases that are not life threatening but as you rightly pointed out about the life altering part, only those who are suffering can understand how tormenting it is to live hopelessly in the dark. Let everybody be able to find their triggers and hope for managing them.
    • justine_23155
      justine_23155 heather94146

      Posted

      Thanks for understanding. I have a combination of hives and fluid filled blisters. The blisters often rupture because I scratch! I don't even realise I'm doing it and it's often when I sleep so I end up with open sores. X
    • heather94146
      heather94146 renni01775

      Posted

      This blog has been more help to me than any doctor has! I was in a really bad way the night I came upon this. I couldn't eat, sleep and was barely functioning. All I could do was cry and itch. Anything I ate had me doubled over in pain which flared my hives up even worse. Now.....I can live almost normally. I have food restrictions which I don't consider restrictions anymore, just my way of eating. I find new things out each day. I still have flare ups, sometimes for no reason. For me I notice my monthly cycles affect me or is it my hives affect my cycle...still don't know.

      Keep in touch on here. There are some really good resources (people) who have been there and know what works!

      Good luck!!

  • lorraine34338
    lorraine34338 justine_23155

    Posted

    Okay, you've had a lot of very good advice but the first opportunity you have ask your GP to refer you to see Dr Sabroe at Sheffield Hallamshire Hospital, she is one of the leading dermatologists in the Uk that specialises in Urticaria of all types. She is lovely and am sure will help you. I have also been on Doxepin which is an antidepressant with some antihistamine 

    included. I have not had urticaria like some of the people on the blog but I know how awfully depressing it is and if you get as low as you are your immune system is affected. I also had s nutrionalist organise a test at a private lab for 'leaky gut syndrome'. Very few doctors believe in this but my test was positive for it and I have some things you could try that are healthy and not drugs. L-glutamine powder from Holland and Barrett, very strong probiotic tablets, very good multi vitamins, crushed flax seed (add to cereal) and fresh fish, meat, Vegs and some fruit that doesn't interfere with drugs like cyclosporine. Keep away from anti-inflammatories like aspirin, ibuprofen etc and try if possible not to have antibiotics. I used very salty water, saturated salty water to ease itching and redness and for me it worked. Please let me know if you get a referral to Dr Sabroe. Lorrsine

  • lorraine34338
    lorraine34338 justine_23155

    Posted

    Justine it's happened again. Dr Sabroe, Sheffield Hallamshire Hospital, try to get a referral. I'll write you again tomorrow.
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