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
hives1222 Little_Flower
Posted
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
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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....."
pinacolada9055 hives1222
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wendy62425 hives1222
Posted
thank you Wendy
janet44210 wendy62425
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wendy62425 hives1222
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It has been awhile since your post. How are you doing? Are the supplements working for you to build up your immune system? I am really anxious to hear back from you. I need to go the natural way to fight off these hives by fixing my immune problem. I heard Quercetin is good as well.
take care
Wendy
Andrewt83 wendy62425
Posted
I am currently taking 500mg quercetin and have been for two months. I am also taking fexofenadine and ranitidine along with Montelukast . It has taken a couple if months but I finally have control touch wood. Buy quercetin I would x
yolande09858 Andrewt83
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binabina Little_Flower
Posted
Like all of you, I have found most doctors - including the specialist immunologist - happy to label the symptoms but unable to shed light on a cure or cause. When I first had this, for two years twenty years ago, I had an excellent supportive GP and the support of my sister, a pharmacist - but many people seemed to suggest I was somehow making this happen(!!! Why? How?) or said it was stress when the only stress I had was being covered in spots and repeatedly swelling to the point my airway was endangered.
Having tried many other drugs, including steroids, which all didn't work.... I went on a drug called Hismanal for two years, gradually decreasing the dose, but this was only effective when I also avoided certain foods. The foods I avoided were from a list I compiled from going on an elimination diet. I had only water until the symptoms cleared and then added one food at a time... And the list of problem foods was long with most fruits, especially fruits with high citric acid and/or in concentrated form, causing the biggest reaction. A glass of pineapple juice had me dialling 999. Hismanal has since been withdrawn (it caused heart attacks in some people who took it, I believe) but there are new drugs on the market now.
So, 20 years on the symptoms came back. As before, the trigger seems to have been an overload of insect bites with the urticaria building and building over weeks with angioedema and vasculitis adding in. This time I had repeated swelling of my oesophagus (food pipe) which was then pressing on my airway so had repeated trips to A&E and then five days in hospital.
I am currently on 4x the recommended dose of fexofenadrine, plus the full dose of citirizine plus montelucast (yes, an asthma drug but it is prescribed for urticaria as a side effect is that it blocks one of the three types of histamine) and also Zantac (prescribed usually for digestive problems but, again, I'm taking it for the H blocking side effect). I also have piriton to add in for moderate emergencies and an adrenalin epi pen for extreme emergencies. Uk ambulances treat this like an allergy - adrenaline and sometimes hydrocortisone - and I can reassure those of you who haven't reached this extreme that it works a treat though only lasts a couple of hours.
On this huge cocktail of drugs, while in hospital trying to believe the doctors that I was wrong about the food bit, I started eating an orange. Within a couple of minutes my mouth and lip area went red and started swelling so I didn't finish the orange. Half an hour later spots appeared all over my legs. One of the nurses documented this clear food reaction in my notes.
Thankfully, I still have the support of my sister who, as a medical professional, ensures the doctors listen a bit more carefully. I was still being told this is not a food allergy. This is technically true. At a chemical level food allergy involves immunoglobulin - what they look for in allergy tests. However, food is a factor. My GP and the medical consultant whose care I was under at the hospital now acknowledge this. My wonderful sister did some research and found that my foods to most avoid are all foods that promote the production of histamine in the body. My foods with the less severe reaction but still some reaction are all foods that contain a lot of histamine. Some foods, such as tomatoes and strawberries, both contain and promote histamine. There is also a third group of foods (a lot of those with caffeine and alcohol) that lessen the ability of the body to excrete histamine. If you look up 'histamine intolerance' on the allergy uk website you will find a fairly full list. This puts the science behind your discovery, Nick,
Although I am still on the stupidly high (unlicensed) doses of all the drugs they are, at least, combined with the dietary restrictions keeping me almost symptom free and able to return to work. My mast cells (that produce histamine) are still in overdrive so I still get some lumps from heat or pressure but they are milder. My aim is to be on the restricted diet (I am being referred to a dietician for help keeping things balanced) for long enough to get down to licenced doses of the drugs and then to gradually reintroduce foods - first the histamine containing foods, later the histamine promoters. Then I'll fade out the drugs altogether. Last time I did this I had 20 years clear. This time I understand far more about histamine and have a ready-made food list which helps.
Please note: the reading my sister and I have done is about histamine intolerance - people with lower ability to break down histamines in the body and excrete them due to low amount of an enzyme (dioxase I think). I don't know if this is what is happening with me (us?)... It seems more likely that our mast cells become over-active at producing it. It could be a combination of the two. A good book for the food list is called 'what hit me?' But be aware that some of the symptoms described won't be relevant as the book is about histamine intolerance (HIT) not over-production.
What seems bizarre is that, given that doctors know this relates to histamines (hence prescribing anti-histamines) and other scientists know which foods affect histamines in the body... No-one until my sister working from her knowledge of the accuracy of my hard-won food list from 20 years ago, has made the link. Needless to say she will be publishing her findings in a pharmaceutical journal if one will take it - but I wanted to share it here first in case I can be of help to some of you where (like me) the drugs alone don't work and the symptoms are debilitating.
I hope to hear back from some of you.
Bina
ann09075 binabina
Posted
I have suffered from Chronic Urticaria for 15 years and was given huge amounts of antihistimes, steroids and eventually Xolair. However, Xolair stopped working for me which was very unusual. Through the recommendation of my allergist, I eventually sought out a rheumatologist/allergist specialist in Denver which determined my hives were autoimmune related. They injected me with histamine, saline and my own blood and I reacted to the histamine and my blodd. I know this sounds bizarre, however it confirmed what the doctor believed which is that my hives are autoimmune related. I am now on methotrexate and just started plaquenil. I will stay on methotrexate for 9 months and and after 3 months, I started plaquenil, which if works, I will remain on it for life as long as my vision is ok each year (it can cause glaucoma). I highly recommend that you start with Xolair however. This tends to help many people with chronic urticaria that don't know why they get it (healthy otherwise). Xolair can be given by your allergist and the pharmaceutical company has financial assistance because it is quite expensive. However, if you see that Xolair does not work, go find a rheumatologist/allergist that has experience with chronic urticaria. My allergist for 15 years could never figure out what was wrong with me because I was never allergic to anything, I never had any positive blood tests indicating I had any diseases. Hives would come for months and then go for months/years. They were very large and I would bleed from scratching, so I would have to eventually get on steroids, along with round the clock antihistimes and other medicines that help hives - doxepin, allegra, claritin, zyzal, etc. The steroides were horrible and I am so glad I am off of them. The doctor that helped me greatly was Dr. Tho Truong at National Jewish Hospital in Denver. She referred me to Dr. Julie Patel in Houston's medical center, which I am now seeing. Both of these doctors are rheumatologists/allergists and maybe they can recommend a doctor in your area that you can see. Google them and you will see their specialty. By the way, my mom has rheumatoid arthritis, which is also autoimmune. Check your family history. Autoimmune disease may be genetic, however they may not always be the same disease from one generation to another. I wish you the best!
debolite binabina
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emil79508 Little_Flower
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ayda emil79508
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Doctors do not have the knowledge to deal with this and will probably fob you off. I hope you find some salvation.
debolite emil79508
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marcus_Jackson Little_Flower
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I have been suffering with both for about 2 years now and it has been a nightmare when it kicks in. However...I have had periods where 4 months have gone by without a single flare up...maybe a few small hives in between....but nothing problematic.
I take Fexofenadine Hydrochloride 180 mg morning and evening and it works like an absolute treat. The one thing that may be extremely hard to hear for you (as well as it was for me!) is that you HAVE to change your diet. And by diet I mean ALCOHOL. It absolutely killed me to hear this but it has a significant role in how many hives you get.
Being out of shape, not eating enough fruit, not getting enough water in your day to day activities can majorly affect your well being. Doctors say it's nothing to do with autoimmune problems, but actually that's one of the route causes to urticaria/oedema. When I feel healthy, rested, not stressed, or not run down I will never get any hives.
The major contributing factors to causing hives/oedema are the following;
STRESS
TIREDNESS
BEING RUN DOWN/SICK
ALCOHOL
POOR DIET.
I have battled through this and have found when any 3 factors are active at once you will get hives. On holiday generally none of these are active so you can dabble in histamine inducing substances like alcohol. I can drink as much as I like! However of I'm stressed, tired and run down - alcohol trigger hives and then if it's bad enough angio oedema as well!
Hope this has helped you guys.
Marcus
janet44210 Little_Flower
Posted