Chronic Urticaria

Skin, nail and hair health
1

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.

2

Hi there

I know it is long time ago that you wrote this, but I wondered whether you were still suffering from chronic urticaria or whether you had been successfully treated. My husband is going through a similar experience at the moment and is getting very depressed as there doesn't seem to be any one thing we can identify that triggers it off.

We have already had to visit A&E twice in the last 6 months where his lips, eyes and nasal passage have swollen so badly that he was frightened it would affect his airways.

I would be interested to know whether you had any success in being cured or whether it did just clear up on it's own which is what he has been told will happen eventually.

Any information you have will be greatfully received.

Thank you.

3

Dear Sufferer,

What medication are you on? Ramipril? and have you had any illness that was unduly severe, like flu etc

I have had 5 months of hell being branded as a liar, Münchhausen sufferer, hypochondriac etc. I have been so ill with other symptoms. I went to the Allergy Clinic in Southampton and Doctor Salagean was wonderful. She diagnosed Angioedeama, amongst others. She wrote to my Surgery and asked for a change in BP medicine. I

Up to press that has not happened. Why send me to a clinic and then not treat the result? The Specialist rang me and asked had I been prescribed new bp medication. She does not understand what the problem is. Neither do I.

If you would like to compare notes and see if there is common ground then please get in touch . If any reader also would like that I am very willing.

Susan Williams.

Emis Moderator comment: I removed the email address as we don't publish these. If you want to get in touch please use the messaging service.

4

Hi Susan

My husband is suffering a similar problem after being on Ramipril for a few months had severe allergic reaction now gets hives every day (13 weeks later after stopping drug) still suffering. Finally being referred to allergic clinic on Friday for tests. Been to A & E twice when his face swelled up doctors at hospital suspect caused by Ramipril but local GPs won't accept this. Now suspect he may have developed a food allergy but before Ramipril was never allergic to anything. Sunlight, shaving, eating, relaxing all can bring on a severe attack.

Given short course of steriods by hospital but these did not work. Now taking anti histamines every day just to try and function but even these not keep it away for long.

So very interested to hear how you got on and any treatment that worked.

thanks

5

I have been experiencing all the symptoms you are describing since August and it's so frustrating. I don't have the money to spend on countless tests and don't believe the doctors can help me as they just give me steroids or Benadryl that has no effect at all. From everyone else I've read that has the same symptoms it sounds like the doctors have no answers. But I know that God has an answer because He is the One Who made us. I read last night that someone has been using Quercetin and gotten positive results. Since I see a Naturapath regularly, I have sent her an email asking her if she knows anything about it. Because I get the terrible itching & burning rash on my body and also the swollen lips and have experienced a swollen tongue in the past, I am at a loss as to what I can try next. The food allergy test showed that I can't eat milk products and eggs so I will stay away from those things but I also believe stress really aggravates it. There might be other things that affect it but I don't know what those things are yet.

Many people have suggested different food diets like Paleo, vegan, inflammatory diets, and I don't know what to try at these point. Reading this blog has given me the most help in the way of answers and not feeling alone with these terrible symptoms, although it's also been discouraging hearing people have suffered for years with this weird illness.

I work 25 hours a week and can't afford to miss work and pay for allergists or dermatologists who don't have answers. I've been praying for answers and wisdom on the next step and waiting on God to help me stay calm and trust Him to show me the direction I should go next.

Please reply to my post if anyone cant give me an update on their treatment that can help this problem.Or just reply to share your experience. My heart goes out to all of you.

Thanks for posting

MLT

6

Update on what I wrote above. Finally got to see a specialist at the hospital. He took one look at my husband and the photos we had taken when condition was at its worst and said not food allergy definitely the Ramipril tablets. He has stopped taking these back in March and refuses to take any other tablets now and is trying to keep his blood pressure under control through diet. The specialist told him to continue taking anti-histamines every day and eventually it will go. It's been about 8 months now and his attacks are not as bad as they used to be but he still has to take some anti-histamine most days. The hospital wrote to the doctors and they still won't accept its the tablets although he has letter backing up what we thought. Before he took the tablets he wasn't allergic to anything. The tablets have affected his immune system it is now over sensitive. The specialist said not to avoid foods we thought he might be wheat or gluten intolerant as this also seemed to trigger attacks. However been told definitely not food related and not to avoid foods as you can then become allergic to them. I hope this helps. The local GP was trying to say he was allergic to food etc anything to avoid blaming all this on Ramipril!

7

Hi, new member here!

I have also suffered urticarial type symptoms and general skin allergies for many years. These flared in my early teens and then disappeared right thru till my early 30's. I then found these returned and I was left trying to work out what was causing the problems.

Trips to the Drs and specialists came up with no real answers so I was left to try and work out what it was. I wont go into all the research I did but I have found what I consider a solution to my urticaria and skin issues. This centres around me hammering my system with acidic food and drink substances over many years and my body getting to the point where it couldn't combat the acidity any longer which I think then triggered the urticaria. I was a big diet coke drinker and this along with lots of other acidic food nailed my system, I am no expert in this field and can only tell you my own story.

So whilst I haven't followed his juice fast idea what I have done is set out to take the acidity out of my body, and I have found something that has really worked for me and has made me feel 100% better and stopped my urticaria- I have been drinking lots of filtered water, but the magic ingredient is alkaline drops, I simply pour myself a large glass of water and add a good amount of alkaline drops, ok so the water doesn't then taste to good but after no more than a week my skin has returned to normal, no more lumps and bumps and no more itchy rashes.

I know this sounds to simple but for me it has worked and I am happy to answer any q's thru the site if anyone wants to know more.

I am posting this as I know the misery skin issues cause. If I can help just one person then I will be very happy.

Keep well. Nick

8

My urticaria began with a bite that I got in the woods while hiking. I don't know what it was a spider or something. I have had swelling on my face or red itchy burning welts on my body that feels very painful like shingles. It's been miserable. This past week is the first week that I have been symptom free regardless of what I eat.

I have been on a food plan given to me from my naturapath that was pretty helpful but if I varied from it even slightly I would have a reaction. She has had me on supplements that would boost my immunity system. I have had people pray for me continuously and just this week I have not had any reactions on any part of my body. It's been months since I've been symptom free.

Thank you for sharing and I will remember the alkaline drops. That's something I haven't tried. I will let you know if my symptoms are gone permanently.

Marsha

Marsha

9

Hi All

Thanks for sharing your stories, it's good to know I am not alone.

Nick - I am very interested in your Alkaline drops and water. Can you tell me how much water in the day you drink with how many drops of alkaline and where you get the alkaline from. I really want to give it a go.

Thank you

Amanda

10

I would love to know more too NIck about the alkaline and water treatments that you are doing. I have had this chronic urticaria for five months now... and I also have angiodema with it as well.. very uncomfortable, and frustrating... please anyone.. help!

11

Hello everyone

Im 20 years old and have had Chronic Idiopathic Urticaria & Angiodema for about 5 or 6 years. I was very frustrated at first but it has calmed down quite alot.

I have been hospitalized with it before because my throat and tongue swelled up and I had to go to hospital and have a needle( I forget the name of it now). I believe mine was bought on by stress as I moved to Ireland a year before I got it and I didn't enjoy it there. However I have been back for 4 years now and it is still on going. I have had blood tests but nothing was found and I was told basically there is nothing they can do and to live with it.

I have been on medication since the start, I think the thing people need to realise is the medication doesn't make it go, it just controls it. When I get these attacks they can be very severe. I get swollen feet, eyes, lips tongue, hands everywhere! I have also realised lately the cold can bring it on, if I bang by hand the next day it will be a swollen rash. Anything can bring these on. I will list the medication I am on daily, this medication has dramatically helped the control of this.

In the morning:

15mg Levocetirizine

150mg Ranitidine

In the night:

10mg Montelukast

150mg Ranitidine

25mg Hydroxyzine

If anybody has anything to add about the medication I take or any questions then just ask.

12

Hi Mike,

I am on Allegra two in the am, 150 mg ranitidine in the am, and as of right now, 20 mg of prednisone in the am.. in the pm, I am on two reactine, 150mg ranitidine and as of right now, 30mg of hydroxyzine, but she told me that I can go up as far as 200mg of the hydroxyzine if I need too...I was taking benedryl and they told me to stop that and take the hydroxyzne instead.. (which I dont find does much for me except makes me sleepy...) May I ask..what is the Montelukast? Is that an immunosuppresant?

I am so frustrated with all of this!

Tanya

13

Hello Tanya

From what I know Montelukast is used to treat people with asthma but it was prescribed to me when i first got urticaria 6 years ago and my medication has never been reviewed. Ive read online that it is useless in treating people with urticaria. I know its very frustrating, how long have you had it? maybe this isn't advised but it works better for me...if i have an 'attack' instead of take 15mg of levocetirizine i take 45mg and instead of 150mg raniitidine i take 450mg so i just triple my morning tablets on the days i have an attack. If you have only been on hydroxyzone for a short time then youll be glad to know that sleepy side effect goes away within about a month. I had it terrible and felt like i had a hangover which was horrible having to be out my house for 6 o clock for college. If you want to know anything else just ask.

14

Hi All

Interesting all these comments and the various meds which are prescribed, I was only ever given prednislone when my reactions were really bad and I felt all these did were supress the issues and once they were stopped the problems would re-occur.

I am a firm believer that these issues happen because of an imbalance in the system- this can be caused by any number of things, Mike mentions stress and I for one know this was a cause for me, easy when people say don't get stressed but more difficult to put into action!

So what we need to do is rebalance the system- I believe urticaria is one issue which comes from an autoimmune disorder, the body is tangled up and fighting itself because it thinks its under attack. So when you get stung by a bee, the area surrounding the sting swells, this is largely due to the histamine the body releases to ensure the sting area is dealt with.

In the case of urticaria and angioedema the body is thinking its under attack on a much bigger scale than a bee sting and as such releases huge amounts of histamine to combat invaders that just aren't there.

Now I am no Dr but I truly believe the amounts of chemical we ingest thru the air and thru our food could becausing these issues and what we need to do is work with our systems to assist and reset. This doesn't mean going on any strict and crazy diets but just being careful on what we are putting into our systems.

Happy to answer any q's and comments.

Nick

15

Hello,

I've had the same symptoms that everyone here seems to be describing, itchy rash or hives and sometimes swollen lips and eyes. I first had this about 3-4 years ago and it occurred out of the blue, I went to probably about 10 doctors total including mutliple specialists: allergist, dermatologist, immunologist, everything! All of my tests came back normal, they could find nothing that may be causing these hives. (Apparently it is very common to have chronic urticaria and in almost all cases a cause is never determined.) I also tried allergy injections, an allergen free diet for a while and changed all my detergents, soaps, deoderant to all natural allergen free products and none of that helped! They first started me on a bunch of prednisone and benadryl but similar to everyone else it really didn't help completely and it was only a temporary fix. After a full year of daily hives from head to toe they went away, it was a miracle! I had a year free of hives and then tragically they returned again in April 2013 and I've had them since then. The one difference this time is I found a new doctor who prescribed me the best "cocktail" I've had so far with the best results. I've had WEEKS without any hives what so ever and they are vastly improved! So much so that I've started tapering off my medications to fairly positive results. This is what I was taking:

In the Morning:

180mg of Allegra (fexofenadine)

150mg Ranitidine

10mg Zyrtec (cetirizine)

100mg Dapsone (**This was the major new one for me, no one had every tried this before but my new dermatologist had seen really good results in the past and so have I)

In the Evening:

180mg Allegra

150mg Ranitidine

10mg Singulair (montelukast, this medication is typically used for patients with asthma and allergies but it is in essence an similar to an antihistamines. It is a leukotriene inhibitor, so it helps to stop some histamine production)

50mg Hydroxyzine

At this time I am only taking the Dapsone 100mg and one allegra tablet in the evening, I was able to cut back on almost all my medications. I am so happy with the results I have experienced and if this helps anyone at all I'm happy to share it.

Despite my outcome I was still never able to determine why I was getting these hives, and I was intrigued by Nick's suggestion of the alkaline drops. What kind of ratio were you using? How many drops per how much water and how frequently were you doing this??

Hopefully this helps!

-L

16

I have chronic urticaria and delayed pressure urticaria where the latter is more difficult to treat. People who don't understand this condition do make sufferers sound like liars but as we know the pain and discomfort is real. Doctors cannot help. How is it that you are not referred to a specialist? Although I do frequent a consultant monthly I am still like a guinea pig. Every body level of severity is different. I recognise practically all the medications mentioned by others because I have been on them at some point. The only medication that has worked in steroids prednisone but as you may be aware this is only short term. I am living in hope that they get it right wiyh me because I am getting fed up with weekly or fortnightly bloid tests I am enduring that make my arm flare up. Stop wasting your time with doctors they are not experts demand to see a specialist. To all fellow suffers keep in contact with your stories as we need to stick together. I don't know any websites or anything dedicated to this and that id what is needed

17

Hi Lindsay

I am still drinking 3 pints of water a day with 10/12 drops of alkaline drops in each glass, One first thing in the morning, one around lunch and another before bed. For anyone starting I would suggest increasing this to 5 pints to really cleanse and to start reducing acidity. The water wont taste to good but one can get used to it!

I make no guarantees, but like lots on here I was prescribed various meds and creams and whilst some helped, none of them cured. I know the water and alkaline drops has helped me as after 5 years of my symptons reoccurring I have been in an extended period of remission and I if I ever start to feel my skin coming up then I take a glass of water with a higher dose of the drops and this seems to calm and bring back to normal.

One big thing is to try and not drink any carbonated drinks, diet cokes and the like are a big no no when your suffering from skin issues. I used to love drinking diet coke, maybe 3/4 cans a day and then more at the weekend with alcohol. All very acidic and after years of consumption the body just cant neutralise the acid anymore as it uses its calcium reserves, when they are gone the next stage is an imbalance and in lots of people like me this come out in the skin. And its not just carbonated drinks, a lot of food that one would consider non-acidic is in fact highly acidic. A google search will list and may surprise!

Hope my input helps.

Nick

18

I hear everyone talk about drugs to help their condition which can only bring on more symptoms and be very expensive. I cannot afford to buy medicine that might work and then cause side effects later.

What I have found is that our diet can change our condition. I have recently started reading a book called "The Hidden Plague" by Tara Grant and am checking out her blog. Now I know that she has a different condition than Chronic Urticaria and Angiodema but I have gone to a naturapath for years and when I tried going to the doctor and he didn't have a clue what was wrong with me I decided to stick with my naturapath because she helped me through breast cancer. Al the doctor wanted to do is give me antibiotics and steroids. That doesn't cure it. We have to get to the root of the problem.

Dr. Bye put me on a regimen of supplements that would help build my immune system back up. That is what is suffering here. That is why it keeps happening. She also looked up a food plan to try that addressed hives, which is what happens when we break out with a horrible red, hot rash that itches and than burns and makes us miserable. Or worse a swelling on our face that causes disfigurement. Look at the book and see what you think.

Marsha

19

I have suffered with severe chronic hives for over 5 months.  My allergies and Primary care physicians prescribed me all sort of medications, which caused more harm to my body than good.  I got force after taking these medications.  After several online research, the following natural medicine helped cured my hives (this is for information purpose, please do your research before trying any of these products):

Retrieved from an online article: “Nature may provide a key for controlling and beating immune disorders in the form of natural immune modulators. Immune modulators can either up-regulate or down-regulate natural immune response as needed, enabling people with immune disorders to have more normalized immune function without the side effects of unnatural medications”.

The powerful natural immune modulators are:

ASHWAGANDHA

Ashwagandha is one of the most highly regarded and commonly used adaptogens in the Ayurvedic pharmacopoeia. Maximizing the body's ability to resist stress, it enables the body to reserve and sustain vital energy throughout the day while promoting sound, restful sleep at night. 

PLANT TONOSPORA CORDIFOLIA

(I use Life Extension Immune Modulator With Tinofend from Amazon)

Bottom of Form Helps support the activity that regulates immune response and enhances the function of protective cells called macrophages. Helps limit the number of eosinophils (type of white blood cell) already within normal range.  Provides polysaccharides to help optimize the immune system's normal defenses, includingneutrophil (type of white blood cell) function.

MAGNESIUM

Magnesium is a powerful and essential immune modulator. Known as the "master mineral", magnesium is involved in no fewer than 300 body processes. A deficiency in magnesium has been strongly linked to immune disorders and it has been variously estimated that anywhere from 70 to 95 percent of us are deficient in magnesium.

VITAMIN D3

Vitamin D3, known as the "sunshine vitamin", is essential to life itself. Several studies in recent years have indicated that vitamin D3 is a powerful immune modulator which could be useful against autoimmune disorders. Furthermore, like magnesium, deficiency in D3 has been linked to autoimmune disorders. The best source of D3 is sunshine. When that is not feasible, supplemental D3 can help.

 

CURCUMIN

Curcumin is the major component of the common kitchen spice "turmeric". It is a wonderful herb which has anti-inflammatory and anti-cancer properties and it has been shown to inhibit autoimmune disorders. Note: curcumin is ordinarily not very bio-available. Consuming piperine (black pepper) and/or coconut milk may improve absorption somewhat, but the best therapeutic value may be found in curcumin supplements designed for high bio-availability.

BLACKSEED oil

Blackseed oil (Nigella sativa) is another powerful immunomodulator and it has been used for centuries for a wide variety of illnesses. The prophet Muhammad was reported to have said that blackseed is a "cure for everything but death".

 PLANT STEROLS AND STEROLINS

According to Lorna Vanderhaege, an expert in immune health, sterols and sterolins are the preferred supplement of choice for balancing the immune system. Here is what she has to say:

"Plant sterols and sterolins enhance the ability of T-cells to divide thereby increasing the number of T-cells in the immune system arsenal. They also promote the secretion of immune protective factors. These powerful plant fats do this without enhancing the action of inflammatory agents and the production of damaging antibodies.

By reducing the production of antibodies the immune system can get back into balance and stop destroying the body's own tissues....."

20

Hi ive been using the alkaline drops and it seems to be working for me, how long shall i keep using it for? how long did you? my rash is calming down a huge thank you, as ive been on steriods ,antihistimes and they are only a short fix.your a life saver nick

michaela