Advice? Life-ruining, intense urticaria for 7 years?

Posted , 8 users are following.

I finally made an account because I'm a little desperate from advice from you guys.

I've had chronic urticaria for over 7 years now. It's completely destroyed my life with it's severity. To the point that I sometimes question if it's urticaria at all out of pure paranoia, but it's what the doctors tell me it is. It took awhile to get to the diagnosis, as I spent the first 3 years going through doctors who somehow had no idea what to do with me. (They tried antibiotics, creams, just telling me to take Claritin??? My very first doctor wouldn't even touch me, he stood on the other side of the room like I was infected.)

If I wear my jeans too tight, a bracelet too long. If I nudge something wrong, or eat the wrong thing. Sometimes for no reason at all, I get large patches of swelling, red areas. Sometimes they are just small dots. The dots get larger and larger, they make little cliffs in my skin in large patches . I call myself the albino dalmatian, as that's what it looks like sometimes. 

The swelling, the itching I could handle. But the pain is intense. It swells so much and is so hot to the touch that if I get one on my neck, I can't turn it. If I get one on a leg, an arm, or a finger? I cannot bend that joint. At all. The ones on my feet at times keep me from walking and swells so much it feels like I'm stepping on a foreign object, like stepping on a ball on the carpet. I can't move in spots it's swollen like this.

Someone here mentioned that they were prescribed (Ranitidine) and (Montelukast). This is the most recent attempt by my newest doctor. (He has a habit of explaining NOTHING to me.)  He suggested a shot called "Xolair" that I have zero knowledge about. I keep reading about hair loss and all this other stuff, and I'm just so intensely frightened by all of it. 

I'm giving the medicine a try. I don't see a huge difference and it's so confusing to be taking medicine for heart burn, antihistamines, and stuff for asthma as I stare at my skin swelling up like this. 

Every doctor I've seen says that I have "one of the most intense cases of it they've seen". But  could it be something else? I've been checked for everything under the sun and at this point trying to predict what causes it is like shaking a rainstick for me. There's no real telling if it's my diet or whatever else. I've tried to fast, I still would get the pressure hives no matter what. They swell, they are intensely hot to the touch, and recede by the next day like clock work as if nothing ever happened. I'm always amazed that my skin can stretch so much and not be causing permanent damage. 

The weirder thing is that I have zero food allergies before this all started when I was 22 or 23. I've just turned 30 now. I'm in good health, good weight, no bad habits. I'm completely confused to how I went from being a perfectly functioning human being unable to wear a pair of high heels without knowing I won't be able to walk that night when my feet swell up. If it gets on my lips or my chin I'm pretty much not going out, as I look like a monster. It swells up and my boyfriend lovingly calls it "duck lips", as I look like I got punched in the lip on one spot. (No, they don't entirely swell up like an allergic reaction. Just in one spot!) 

Does anyone have any advice for me? Has anyone experienced anything this bad? What medications worked for you? Maybe, has anyone had any experience or understand what Xolair is? Because I'm scared that it's going to cost a fortune and perhaps do more harm than good.

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10 Replies

  • Posted

    HI Likely Odd.

    If this site alowws this link you can read about Xolair.

    http://www.medicines.org.uk/emc/PIL.24914.latest.pdf

    If not I'll copy and paste the whole thing in the next message.

    I am a sufferer of Urticaria and Angioedema of 9 yrears so I know were yur coming from.

    I take these drugs prescribed to manage my condition.

    Alimemazine 10mg tablets 2x3 times a day

    Fexofenadine 180mg tablets 1x daily

    Ranitidine 300mg tablets 1x daily

    Prednisolone 5mg tablets 8x daily when req

    Jext 300micrograms/0.3ml (1 in 1,000) solution for Emergency

    injection auto-injectors

    Diazepam 2mg tablets 1x when req

    montelukast 10 mg 1 at night

    Lansoprazole 30 mg 1 x2 a day

    chat soon.

    Andy.

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  • Posted

    HEllo. I totally agree with everything your saying. I only got this condition in October and I'm 47. Never experienced anything like this in my life and can't believe how it's changed my life and my personality. I suffered really bad PND before....took antidepressants....I wonder if it was all the extreme stress that brought it on or the strong antibiotics for s lump under my arm. I have been on Steroids tapering from 35mg plus weight gain down to 5mg. I tried Cyclosporine left me hairy and high blood pressure. Now I'm on methotrexate...slowly building up each week. But it's the steroids I rely on last week I couldn't hardly walk as I wore flip flops and day and half later my toes were all swollen and burning I couldn't sleep. Dr said go back up on steroids for a few days 15 mg. Life savers....But I hate them all at the same time.
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    • Posted

      Also it's worth joining the Facebook forum on Chronic Urticaria group (private) that has saved my sanity. People from all over the world giving each other support and talking about the drugs and there side effects especially Xoliar ...Dr's could do with joining it too. They could learn do much from the site. I hope that helps.
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  • Posted

    Hi, lots of factors sound like triggers to me. If, like yourself, a person has been ill with this condition for a very long period depression is bound to kick in. I only had mine for a year and I had to go onto Doxepin which is an antidepressant with antihistamine. This was fine for me but other people on this blog have had side effects with it. Also my triggers were periods of ill health, colds, sick bugs and I found out from a nutritionalist that my digestive system wasn't working properly. I also had chafing issues, couldn't wear earrings, necklaces, watches, etc without coming out in itching and bumps. I managed to get referred to two wonderful Specialists who sorted me out without the necessity of steroids but I wasn't as bad as you or others on this blog. I live in the UK and if your doctors are trying Xolair I expect you live in the US maybe. I would advice you to try to get a gut permeability test to check if your digestive system is working properly. It is called something else but as soon as I put the condition down it gets blocked, sorry. 

    I do believe what you have is not simply chronic urticaria but angioedema urticaria and steroids may have to be the way to control it even though we know they are not good for us. I don't think food allergy comes into it but high histamine foods might and you can get a list from the internet, Do try to be tested for that gut issue if you can. A stool test is not what is needed, its a permeability test which is taken from a urine sample. Good luck

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  • Posted

    Definitely try the Xolair. It has only recently been licensed for urticaria and gives good respite short term. You will be having regular injections for 6months then have a break to see if it has switched the urticaria off.  Urticaria usually burns itself out though can rumble on. It sounds like you have pressure urticaria. Most individuals with urticaria only experienced very mild side effects if any from the Xolair. Side effects listed have been found in individuals being treated for asthma. Diet can sometimes play a part but mostly not. Foods like strawberries can trigger urticaria. It may be worth looking at those sorts of food groups. Antihistamines do help and it is possible to take a much higher dose safely. Have you seem a dermatologist? Am guessing you have otherwise Xolair wouldn't,t have been mentioned. More information can be found on British association of dermatologists website and dermnez is really helpful. Hope that helps,, let me know how it goes 
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  • Posted

    Hi Likely Odd

    I have been diagnosed with ciu and angioedema 4 months now and although it is nowhere near as long as u have it, it is slowly taking over my life. I have had it everyday, doesn't matter if I wear jewellery or not, tight jeans or not, hot or cold weather, exercise or no exercise, it is still there every single morning I wake. I can only describe it as massive raised red raw welts all over my body. It's worse on my legs front and back, thighs and lower leg. Also get it on arms torso shoulders, basically everywhere except my face (touch wood). I have tried numerous different cocktails of tabs, but prednisone is the only one works, and wen I say works, it literally clears overnight. I have 8 5mg tabs to take for a week then ween of them over the next week. Usually I will b clear for a third week wen the prednisone is obviously still in my system but after that it comes back nearly worse. Obviously as much I love these steroids, I also hate them, I feel bloated and generally lethargic. I am currently taking per day 3 10mg cetrizine 1 fexofenadine, 2 150mg Ranitidine and at night 1 10mg Montelukast. This still doesn't clear it just helps the itch. I have an app with ban immunologist on the 19th so I'm hoping for more answers although iv read everything there is to read and I know there really seems to b no answers or cure. Will let u know how I get on.

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    • Posted

      I have a friend on this blog who is on prednisone but has her hives under control so she is coming off prednisone really slowly. She was also on cyclosporine and is coming of that as well. She also had angioedema so don't despair.
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  • Posted

    Hi! I was also suffering from chronic idiopathic angioedema. I had all the blood tests and did not demonstrate any particular allergy. I tried cutting out gluten and cheese and processed foods. I also took prednisone at times and the flare-up would be worse after I tapered off. I also tried all kinds of supplements. What worked for me (and every case is different) is 10 mg of Montolukast and 10 mg of Doxepin per night. The Montolukast is an asthma treatment because it reduces leukotrienes. Leukotrienes are part of the inflammation process. Doxepin is a tricyclic antidepressant but it has strong histamine blockers (histamine being another major player involved in inflammation). This combo has been enough to completely stop the angioedema. The only side effect for me has been ridiculously good sleep and vivid dreams. You are worrying about medication side effects such as hair loss. I worry too, but the angio was causing far too much distress for me and to be rid of that outweighs minor side effects. I hope this helps. Even if this combo doesn't work for you, don't give up hope. I thought there was no cure for me except harsh steroids. Do research but don't let your fear of medication hold you back from finding one that works for you as well! Keep us posted!

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    • Posted

      You sound like the same symptoms i have i cut gluten dairy and sugar also but i get flare ups that last 2 weeks or more for no apparent reason i get itchy rash and hives can barely take it anymore its ruining my life ive had this for 3 years going to a immunologist in few weeks hoping for answers
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