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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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  • mariapham89
    mariapham89 justine_23155

    Posted

    My friends mum had something similar and they nailed it down to gluten intolerance but I'm sure you've probably already ruled it out. Have faith. I hope you get better asap!
    • justine_23155
      justine_23155 mariapham89

      Posted

      Thank you so much for your response. Yes I've been tested for gluten and hundreds of other things. I keep being told that they don't know what the cause is for most cases
  • tonello26977
    tonello26977 justine_23155

    Posted

    My chronic urticaria/cholinergic urticaria started just like yours. I had always felt the itch but began with blisters when they first became visible 2 years ago. The docs told me I had milaria even though milaria does not cause itching with stress or random activity. They treated me for milaria to no avail. However, they did suggest I go to a derm to get full body UV therapy of some kind to exfoliate the top layer of my skin. Since this was a possibility as I have no insurance or job (like you this disease has disabled me immensely), I knew I couldn't make that visit. So I bought amlactin cream instead. The hives didn't go disappear but the blisters were completely gone. Try it out. Do you have a diagnosis yet? I get the diarrhea as well but not to your extent. I swear, the government or corporations must be poisoning our water or spraying some crap in the air. And we on this forum are sensitive to it. This is nutts
    • justine_23155
      justine_23155 tonello26977

      Posted

      I think you are spot on about environmental issues! I went to Sri Lanka for 2 weeks and almost made a full recovery! My blisters were back within 36 hours of returning to the UK. I asked my local environmental agency if they could give me a list of pesticides used in my area so that I could be tested for reactions to them. They politely told me that they didn't give out such information unless I could prove I was allergic to a particular pesticide in which case they may let me know if that pesticide was used locally. Surely we have a right to know what chemicals we are being subjected to in the air and our water? I now only drink bottled water.

      As for light treatment haha what a joke!! Did absolutely nothing! I had no luck with the cream you used but managed to reduce some of the itching with Aveeno lotion. The downside is that it soaks into the skin and makes it soft so that when you do scratch again your skin comes off in chunks!! I know sexy!! Talking of which have any of you suffers maintained a healthy love life through all this? I hate the idea of anyone seeing my flesh- they'd have nightmares!

    • tonello26977
      tonello26977 justine_23155

      Posted

      Ha-ha love life? What does that mean??? Im on cyclosporine now and I've achieved some relief, about 60% in 2 weeeks ie symptoms gone to a point where I can exist, not really exert myself though. Soon however, I'll be switched to methotrexate and steroids as cyclosporine is too expensive for me ($600+) per month. Have you tried cyclosporine or methotrexate? Many folks on this board have achieved drug free remission on those. Many people although not all, have achieved non-drug free remission on Xolair (omalizumab).

      Another thing, and I don't mean to be rude, but have you examined your scalp? Sebhorreic dermatitis is given the benign name dandruff but if you have it, it could be exacerbating other systemic inflammatory processes. Also dandruff tends to come with malasezzia fungi which could be messing with you.

      Finally check for a gut yeast/fungal infection as well as hpylori. While the peer reviewed studies of randomized subjects does not show a link, case reviews of individual patients have shown a link. I don't care what doctors say; they don't know it all and for the most part, all they have learned and do is treat us this making us slaves to big pharma and never curing us.

      Keep your head up. Honestly if you get relief in another country, then don't count out that option.

    • justine_23155
      justine_23155 tonello26977

      Posted

      Thanks that's really helpful!! I haven't tried Cyclosporine or Methotrexate. My immunologist is talking about going onto the Omolizumab though. The whole process is so slow and in the meantime we are all suffering- I find it very telling that so many patients are responding to my post at 2am!

      My scalp is a mess! Now full of scabs! I will ask if it can be analysed. I've never suffered from dandruff in the past but doesn't mean I haven't got it now- so thanks for the tip!

      I've been tested for gastro bacterial imbalance and no joy from that source. I recently read an article about patients going over the Mexico for worm therapy! It's banned in most countries because it's a parasite. But there's a theory that tape and ring works introduce a particular bacterial strain that lives symbiotically with our immune system. In western countries these worms have been eradicated and urticaria reigns, in less developed countries where worm infection is still the norm there are NO reported urticaria cases! Do you get the impression that we are all desperately clutching at straws?

    • tonello26977
      tonello26977 justine_23155

      Posted

      Ha-ha it's only 940pm here no worries :-) as for worm therapy, you aren't clutching. However all the studies are only based on animal studies. Given that most urticaria drugs tell the immune system to chill out, make sure your immune system fully recovers before trying the worms, otherwise they could get out of control

      Xolair isn't always a guarantee, just as with Wendy but give it a try anyway but if you get no relief, try the doctor Wendy is talking about: I've run across her name a lot on these forums but can't remember her name. But the doctor sounds awesome.

      If Xolair doesn't work, make sure you try the cyclosporine/methotrexate +/- steroids. There is also IVIG which has been shown to induce drug free remission as well.

      Read up on the studies and if possible, print them out and take them with you to your appointments. Doctors are totally clueless about this disease and frankly,they need to be taught by us sometimes.

    • wendy62425
      wendy62425 tonello26977

      Posted

      Hi Tonello

      How many mg are you currently taking with Cyclosporine?  I had to go up to 200mg for several months and are now on 150mg then after doctors appointment maybe down to 100...etc....the low dose of prednisone really helped...as mentioned I'm only on 5 mg now.  I have heard of the Methotrexate.......I wonder which one is better with less toll on the body?  So glad Justine found our blog.  Hopefully my friend Lorraine will be able to help with her doctor in the UK.

      Have a good night!

      Wendy

    • tonello26977
      tonello26977 wendy62425

      Posted

      I'm on 500mg daily till tomorrow then 300 daily from then. From other blogs and control trials, it seems cyclosporine is most effective but more side effects. Some people however might not respond to cyclosporine but will respond to methotrexate. Methotrexate is less toxic, cheaper and with fewer side effects. but it takes longer to work (about a month) and it is usually combined with steroids and/or antihistamines to combat breakthrough attacks.

      A little vage but I hope it helps smile"I'll post updates once I'm started on it.

    • wendy62425
      wendy62425 tonello26977

      Posted

      Good Morning

      Did you go on the cyclosporine slowly? My doctors had me go up on it slowly and has me coming down on it very slowly....weeks at a time.  Do you have any side affects?  If so what are they?  I don't think I have any although you have to be careful to take Vit D for our bones with the Prednisone.....unfortunately my original doctor did not tell me that so I have been off and on with prednisone for a year and a half without it 😟 I look forward to hearing if you have side effects with cyclosporine. I pay $60.00 for 60 - 100mg which lasted me a month.

      have a nice day!

      Wendy

  • frankie116
    frankie116 justine_23155

    Posted

    Justine,

       I am so sorry you are through this.  Only people with Chronic Urticaria know the pain and emotional toll this takes on you.  You mention that you see a dermotoligist.  Have you seen an Allergist?  I have had CIU since November 2015 out of the blue and have been on steroids(now low dose), zantac, hydroxyzine, zysol, singular since November.  Any time I try to go off of the steroids I flare up and wind up going to the ER because the hives and Angioedema are unbelievable.  I am getting my first injection of xolair on Tuesday, i pray that this will work and I can stop the other medication especially the steroids since I have gained 20 lbs in 3 months.  Have you looked into the Xolair? Xolair is also for chronic Asthma as well.  It seems that many people are having good outcome with this medication.

     

    • justine_23155
      justine_23155 frankie116

      Posted

      I tried the steroid route for the first 2 weeks of getting the condition and they literally sent me loopy! Seriously howling at the moon stuff! It scared my kids to death.

      I've had to endure every test the dermatologist has given me and now they're all exhausted I've finally got a referral to the immunologist! I have been tested extensively for allergies but was recently informed by a specialist immunologist that these often give false readings in patients taking the antihistamines because they're on 20 times the recommended legal dose!

      I feel as though I've been pushed from pillar to post and fobbed off with cheap tests that the medical staff already suspected would never work! It's a delaying tactic to keep me quiet whilst they hope it will go away as quickly as it appeared. However the dermatologist did unadventurous mention that he expected me to have this condition for a few years yet and that most cases disappear after 5 years! I can't imagine living like this for another 3 plus years! I'll be rocking in a corner by then!

  • wendy62425
    wendy62425 justine_23155

    Posted

    Hi Justine

    My heart goes out to you!  Many Dermatologists are not able to treat urticaria.  You need to see an Immunologist at least.  I suffered this last year with severe chronic urticaria and was horrible.....I am going to a Rheumatologist for possible vasculitis urticaria at Johns Hopkins. I was put on Cyclosporine and very slow taper of prednisone..I'm down to 5mg of prednisone right now and will be for a time....and slowly going down on the cyclosporine.  I have been hive free since September which has been a blessing.......I've had a life!.  You just have to get to the right doctor.  Where do you live?  I am in the US.  You should ask about Xolair monthly injections.  It works for many but unfortunately did not work for me. We are all different.  Hang in there.  There is help out there.  I have a dear friend that has good doctor if you are in the UK.

    i don't know if this is of any help.....please keep us posted!

    Wendy

    • justine_23155
      justine_23155 wendy62425

      Posted

      Thank you so much Wendy. Yes I'm in the UK- we seem to be a bit behind on getting the monthly injections as an option- although I suspect the cost to our NHS probably plays a role!

      I was so depressed when I wrote my blog tonight but feel so much better knowing that there's support out there from people who truly understand what an impact this has on our lives. I'm so pleased that you're responding to treatment it gives us all hope xx

    • wendy62425
      wendy62425 justine_23155

      Posted

      Hi Justine

      Im so glad you found us! 😊 You are not alone....we have all been there and is a blessing to share what we know and what we have experienced with this difficult disease.  My dear friends name is Lorraine she lives in the UK and I'm sure she will be blogging with you soon (when she wakes up😄).  She too was on cyclosporine and slowly went off and has been in remission. YAY!  She will share with you her doctors info.  

      My urticaria is probably due to stress causing issues with autoimmune.  I had this two other times in my life each time lasting 2 years then gone for over a decade after each time.  I was able to treat it with Allegra and that would hold back the hives......unfortunately...not this time....they had to get out the big guns😟 But they are working and I have a normal life and not suffering and able to sleep!  I will be seeing my specialist next week to discuss where we go from here as I slowly go off meds.  I'll keep you posted.  Xolair worked for me the first couple of weeks then not so much so after the forth month we stopped .....that's when I started cyclosporine and low dose slow taper of prednisone.

      I hope you will get some sleep now......there is hope Justine!

      We all care!

      Wendy

       

    • wendy62425
      wendy62425 justine_23155

      Posted

      Hi Justine

      i replied back to you last night but for some reason it's being moderated.  Hopefully you will see it up today. I will get in touch with Lorraine from the UK.

      Have a good day!

      Wendy

    • justine_23155
      justine_23155 wendy62425

      Posted

      Thank you so much. For the first time I feel armed with facts about treatments. I've got hope!! Xxx
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