Chronic Urticaria
Posted , 75 users are following.
Hi I hoping I might get some information on this condition as my GP knows very little on the subject.
I'm a 30 year old mother of 2, I live in Derry, N.Ireland. This is not my first time having chronic urticaria, 7 years ago i had it for 5 months and then it just went away. At the time i was told by dermatologists that it was more than likely the pollen, which i found very odd!!! I've never had hay fever or been allergic to any thing before in my life. I have now had chronic urticaria and angioedema for the last 11 months and it's showing no signs of improvement. I'm having very little luck with antihistamines and am put on steroids every 4/6 weeks, starting at 40mg and working down over a 3 week period. No allergy can be found, my bloods have all come back normal. My skin is covered there is not one piece of my body not affected and it is sever at all times day and night. I have had to go to A+E with sever swelling of the lips, eyes and mouth. I actually have hives on my eye balls!!!! My joints are now starting to swell and in the last week I have been unable to drive due to swelling of the back and neck. Stairs are becoming a real problem because my skin around my knee joints swell so bad i look like an elephant, the skin is very red, warm and painful. I desperately need help I'm finding this very difficult to cope with and family and friends are tired listening. Every time i go to my GP he shrugs and says \"it's awful but there's nothing i can do\". When i can appreciate that this is difficult for him to know what to do i feel like I've been put on the back burner. Dermatology in Derry refused to see me this time saying \" we don't deal with chronic urticaria\", with that my referral was sent back to my GP.
Any help or advise please.
6 likes, 133 replies
stacey88767 Little_Flower
Posted
dave40336 Little_Flower
Posted
I'm really sorry to hear of your plight suffering with urticaria, i had it in 1977/8
and now it is back, Dont know why not quite as bad but swelling of lips and all over the body,, just like you,, i have been told by the Gp not much we can do,, so in 30 odd years they have made little progress in finding a solution to this problem, I know how hard it is to battle with this problem, my next request for the Gp is that i have heard the thyroid under or over can cause the immune system to kick off causing histamine, which is urticaria hives, i have tried not eating for days and still get it,, I also think the body changes every 7 years and maybe it will settle down,, in the 70's i think it lasted about 18months, lost my job etc through it,, what treatments have you tried, i have tried cetirzine loratine if that's how its spelt,, the cetirzine side effect says it can cause urticari hives, so stopped using that, and it seems whatever you use the urticari gets immune to it,, I dont think people unless they have had this can appreciate how awful it is day after day, with out much hope of fixing it, I find as the day goes by i start to feel tired and the urticaria starts,, and after a restless sleep, you wake with it, and mine starts to sometimes fade from a welp to a blotch on the skin, and then repeats as the night comes. I hope while writting this to you, yours has gone,,
PageRead1 Little_Flower
Posted
Do not use any chemicals to clean your home, especially bleach. Use diluted tee tree oil. I suffered for 5 years. Chronic all over body itching, even itching inside of body, eyeballs etc. Angioedema of the undereyes too. I stopped using chemicals and hey, all symptoms have vanished. My doctor never even asked me .... do you use bleach. I used to use it neat. Be careful peoples.
reshell1975 Little_Flower
Posted
I will be going to my PCP today so I can try and get some answers . Thanks everyone for your posts because it helps to know that I'm not alone.
Reshell
dave40336 reshell1975
Posted
I as i said in the blog, i had this 30 odd years ago, really bad then, for ages, it seemed the medication only worked for a short time & hives gets immuned to it,. This time round i have had it for approx 8 weeks so far, tried keeping a food diary etc,, but nothing really seems to alter it,, i did one week have a chinese nothing mad just chicken curry, and egg fried rice, next early moring 4am had to get up lips really swollen and right cheek, i had not taken any medication for 2 days, so may of just been that,, so took one tablet and it slowly eased,, i start my day by having breakfast rice cripies watered down milk, tried other breakfast stuff, but no different, and then as i normally do, walk my dog for a good hour fast pace,, and most times by then the hives have gone down a little,, i have tried gluten free, still no joy, i dont drink tea or coffee not done so for about 18 years, so plenty of water, green tea, and now nettal tea as it has atihistamine. with me i feel cold a lot, also it starts usually at night, i start to feel tired and it starts up,,another night of thinking what stage will it be tonight,, also my Gp said you can take up to 3 tablets where normal is one a day,, i took one at night thinking it will help if i can get to sleep,, it made the urticaria worse,, plus on the side effect info it said the drug could cause rash urtcaria, so stopped taking it, now using loradine, i seem to get it all over but worse on legs thighs and arms,,and butt, when it attacks the lips mine take a quite a few hours to come back to normal,, only thing you can do is just soldier on, it could be food etc that is the trigger,, but i think it is the body going through changes, i'm going to get my hormone level and thyroid checked, as i've read they are linked to the immune system, which is kicking of causing Histimines (Urticaria )
sinead57494 Little_Flower
Posted
mazanne sinead57494
Posted
Hi Sinead, I am from Slaughtneil outside Maghera if u know where that is. How long have you had it and Wat meds are u on? I had it since 8th Feb, horrible illness, ATM touch wood I am hive free but I'm on a concoction of tablets, trying to start an ween of them.
sinead57494 mazanne
Posted
Hi I'm in ballyCastle, will I give you a ring?
mazanne sinead57494
Posted
Yeah but I don't want to put my number out here, what's ur surname iL find u in fb an pm u?
sinead57494 mazanne
Posted
mazanne sinead57494
Posted
I can't find you lol typical, check for me Marianne Bradley
sickofswelling Little_Flower
Posted
Hi everyone,
I am new to this forum but not new to Chronic Urticara and Angioedema. I have been suffering for a long time with these issues. It is nice to see I am not alone and that others are frustrated with the lack of knowledge about this condition too. I am a 41 year old female, living in North America. I first had hives and deep tissue swelling in my early 20's. It came on without warning and lasted for about 9 months. I went to allergists, doctors, you name it, and no one was able to offer insights as to what was causing it. As fast as it came on, it left without warning. Was I ever happy!!
About 7 years later, it returned without warning. I went to a movie with my friend, and before the movie was over, I was on the way to the hospital with swollen lips, eyes and throat. I was treated for anaphylaxis 6 times in as little as 5 months. Still with no idea of what was causing it. The doctor thought I might have a vitamin D deficency and prescribed me high levels of vitamin D. Can't say if it helped or not, but again, all of a sudden (about 8 months later), it went away.
Now flash forward another 8 years and it's back. I've had it since June (6 months now), and it shows no signs of going away. I take very high doses of anti-histamine (My doctor suggested that I can take 4 times the recommended dose of over the counter medicines). I have found some to be very tiring (not just drowsy but physically tired/aching). I currently take 540mg - 720mg of Fexofenadine hydrochloride every day to keep the hives and deep tissue swelling at bay. This is the only over the counter medicine I have found that doesn't seems to make me tired/sore in such high doses.
I agree with most of you that stress seems to be a trigger; although I don't feel stressed right now with the exception of my health issues! haha
Anyways, don't really have any helpful information ~ just wanted to share another story of someone suffering along side you. Just know that we aren't alone and support is here (should we need it).
I hope everyone is doing well and look forward to more comments.
Tina
Losingmymind Little_Flower
Posted
Hi. I'm reading this and crying. It sounds like me. Did you ever get to the bottom of it?😘
Losingmymind
Posted
No😘 Still so sick and so depressed, do you have any advice. Nothing makes sense.
Where do you live? I'm so desperate and I don't know what each day brings. 😘
Let me know. Maybe we can talk if you would be willing to. No one understands what I'm going through .
Thanks for responding. I really truly appreciate it.
Xo, lainie siegenfeld
heidi_10224 Little_Flower
Posted
HI, I know this was a long time ago but I'd like to share my story. I have had chronic urticaria and delayed pressure urticaria for 10 years so I 100 percent know how debilitating it can be. As a result of my urticaria I've also now developed hypersensitivity to many things for example I was covered from the neck down in a wide spread rash that I was putting down to my urticaria until after a few months I realised that it was the washing powder I was using so I only use fairy.
Although I have both chronic and delayed pressure I'm also hypersensitive to other things now so make sure you look at trends when you develop wide spread constant rashes.
Unfortunately for me and this is 10 years on NOT A THING has controlled both my urticarias meds wise. The only advise I have for you is just what I have found gives me at least some relief.
Citrine antihistamine provides me with a little relief from the itching
An anti inflammatory tab when you have a bad flare of angiodema from the delayed pressure urticaria
A shower every night before bed (I know it sounds awful but it helps me)
When you have delayed pressure flare and you get that heat and rash and swelling on the areas where pressure was applied use ice cubes or ice pack to cool it down.
What I have noticed with my trends is that when I get a bad case of delayed pressure urticaria it triggers the chronic urticaria so it is really important you try your best to not wear clothes too tight to your skin. If going out shopping make sure to use a trolley and don't carry anything heavy or your hands will suffer.
Try avoid wearing a bra as much as possible and remove it ASAP when you get home if you are wearing it. Always change from tight clothing as soon as you get home. The back of your legs are probably suffering if you have skinny jeans on as they rub off your legs.
If you have to wear clothes that are a little snug for an occasion then take two antihistamine and an anti inflammatory tablet an hour before you get dressed.
I hope you case does not last as long as mine as it truly is awful. Doctors are no good for me either as they get fed up with you I found when their treatments don't work and tell you there's nothing else that can be done.
Goodluck x