Chronic Urticaria

Hi there, just wondering if you have found any relief in this?

I'm a 19 year old girl with no known allergies, about 10 months ago I developed Chronic Urticaria. At first I thought it was my laundry detergent, my soap, my cats even but even changing my soaps and keeping my cat out of my room did not help. I became very depressed over this, my entire body would be covered in hives and no matter how many antihistamines I took, it wouldn't stop. I felt disgusting. People, even my friends, looked at me as if I had some horrible contagious flesh eating disease. The more upset I got, the worse it got. My lips would swell up to the three times their normal size, my eyes, my feet and my hands would all swell. After several doctors appointments, I was perscribed Prednisone, and at first I thought for sure I was cured. I was to take them for 21 days, and after that time, my reactions were supposed to stop. Unfortunately, Prednisone gave me horrible nightmares to the point that I couldn't take it anymore and as soon as I stopped taking it, the reactions came back just as bad as before. After several trips to the hospital with severe swelling and my throat swelling up, I was referred to an allergist who would perform an allergy test. Still nothing.

At our second appointment, she suggested I may not be allergic to anything other than stress. I changed my whole diet, my whole lifestyle just trying to stop these reactions and they wouldn't stop. When this all started, I was going through a rough patch and was very anxious and depressed which I think triggered this. My allergist perscribed to me a combination of two drugs, one is primarily used as a heartburn medication (Ranitidine) and the other is commonly used for asthma (Montelukast). She said she had recently read a study that said the combination of these two drugs would help with my Urticaria. I take 1 300mg tablet of Ranitidine every morning with a 10mg tablet of Montelukast and another 300mg Ranitidine before bed, this is the only thing that has worked for me. I have been taking these two for 6 months now, and if I remember to take them at the same time every day, I don't ever have a breakout. If I happen to forget to take them and have an especially stressful day, I have a small breakout usually around my ankles or wherever I'm warmest, but these two pills have been a miracle worker for me.

One other thing I wanted to mention, I read somewhere once that hives may somehow be related to arthritis because often Chronic Urticaria is related to a problem with the immune system attacking itself for lack of better words, and arthritis is an autoimmune disease.. Rheumatoid Arthritis runs in my family, my mother was diagnosed when she was 19 and has had countless surgeries to repair the damage this disease has caused her. She was told when she was diagnosed that she would be in a wheelchair for her entire life past 25, my mother is in her late 40's and is still walking. Her feet are made of metal (literally, they had to break all of her bones in her feet and put screws in her toes and metal in her feet because her feet were shaped completely wrong because of this disease). Anyway, back to what I was saying. Where arthritis runs in my family, I wonder if this is some kind of sign that I also have the Rheumatoid Arthritis or if I will be diagnosed somewhere along the road and that this is somehow related...

I hope you find relief, I know how frustrating it can be and how hard it is to find answers. Sending love your way!

You need to see a Chronic Urticaria specialist, there is one in Sheffield, England called Dr Sabroe, she is very good.  A GP cannot help. Steroids are useless and bad for you.  I was prescribed an immune suppresant called Ciclosporin, it worked, got it under control.  You can only be on it 6mths, there can be side effects, I was lucky and didn't.  You may have a histamine intollerance and this can be checked.  There is also a conditon called Urticaria vasculitis but again you need to see a specialist on urticaria.  Some dermatologists usually deal with psoriasis and ezcema and do not know much about Urticaria.  My specialist referred me to Dr Sabroe as she is the best in England. Do try, she sees patients under NHS and doesn't take private, you have to travel though.  Look up my discussion for tips on relieving itching/chaffing etc.

Hi

I have this also what was your answer from the doctors in the end. x

Hi,

I have also been dealing with same issue. I first saw an allergist which Dia this may be hives due to a viral virus.

Sometimes I will have some swallowed joints like my ankle and arm. Sometimes it just hurts with no swelling.

All blood work for RA and lupus came back negative and all the rest of the blood tests. I have been on prednisone, antihistamine, Allegra, Zyrtec...seems better some days, and some days not.

Doctor now suggested to see a Rehumotologist.

Rehumotologist did urine test, and a lot of blood works, and suggested to see a dermatologist to do a biopsy to rule out Vasculaitis. I just had a biopsy and waiting for result to come in. Dermatologist don't think it's vasculaitis, and think just like the allergist that it is chronic hives.

Have you been checked for Vasculaitis?

I know how frustrating this is, I am loosing it, it's been over 3 months and good knows how long more😣!!!

Many thanks for your imme reply to me 

No 

I don't know anything i just going to heart specialist as i had sever pain in heart then my blood moving with some creepy things in my body I felt better with medicine but I m afraid the drug allergic can do anything dangerous with me Our  water is also affecting me on My skin having itching all what I have its inside my blood nothing with outer side If I have red skin any part of body its for few minutes after that its ok i m living in Pakistan I m writing to specialist and international people to get help here is only one  Al Shifa International clinic in Islamabad capital city those are very expensive if the will write back to me then i can get discount in my testing  I think I need only RASK resting then It will be diagnose what happened to my blood either it is affecting my heart or not My bad luck I m in the country where medicine science is not not modern and people s attitude are very bad if I m going to medical specialist they just want to take higher fee from me to hole me with them they don't car to know what is real reason of my sever condition they trying to make me fool that I m taking tensions or I m hypertension patient.

If u can help me in this mater i will be obliged  

Dermatologist in Pakistan  Like  modern thieves they  taking billion rupees they are big lairs I never want to go them My  disease is not related to dermatologist.

Thanks

Hi little flower, I'm also from co derry, I'm 33 and have severe urticaria and angioedema for 6 weeks now. It's all over my body in welts, I am severely down in the dumps abt it, it's literally taking over my life. No antihistamine seems to work. I was on 30mg prednisolone for 5 days which didn't clear it but helped it die away a bit. I am now on 40 mg for 7 days 3 antihistamines and 2 randatine (h2 blockers) it has cleared but reading this I'm convinced it will b back worse when I stop the steroids. Any advice anyone? I'm literally at my wits end :-(

Hi  Little Flower, you cannot be refused a referral to an urticaria specialist, but you may have to travel to the mainland UK to see one. Sheffield Hallamshire has one called Dr Sabroe but there may be someone nearer you have to look into it. There is an organisation called Patient Liasison Advisory Service that would help you, look on the Internet for contact details. You have a right to a specialist that can help you but you need to SHOUT to get it I'm afraid.

I've been following a lot of the replies in this thread very closely. 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???)

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. 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. 

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.