THERE HAS TO BE A CAUSE OF URTICARIA ...

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I absolutely REFUSE to accept a diagnosis of 'Chronic Idiopathic Urticaria' which basically means the medical profession have yet to discover the cause. They NEED to get on with their research. This is a deeply FRUSTRATING, IRRITATING, SCARY, DISTRESSING, PHYSICALLY AND PSYCHOLIGALLY DEPRESSING condition and CIA diagnosis is just not good enough. And most of us CIU sufferers are the type of people who 'don't like to keep complaining', so we put up with the damned itching and also we're too EXHAUSTED with the condition to keep running to the doctor every few days.

GPs don't seem to know who to refer us to. We go for allergy tests, nothing is detected, we're put on antihistamines, they don't work. We go to dermatologists, same thing all over again, all tests are done to RULE OUT this and that, but never to RULE IN. In the UK, there are 'within normal limits' criteria for blood tests. What if you have a body that doesn't work alongside the 'norm'? Your overlooked.

I started with this CIU during a really persistent chest infection which wouldn't go away. I knew exactly where in my right lung the pest was living and yet my GP continually 'couldn't hear anything' with the stethoscope, but I could FEEL something not right. Then I had C reactive protein tests which showed and inflammation 'somewhere in my body' but they didn't know where. I KNEW WHERE.

I suffered with breathing problems and this stupid CIU for 10 months, ended up in A & E several times with angio-oedema and anaphylaxis, now carry an Epipen. The rash eventually subsided after almost a year, but not due to antihistamines because they didn't work, some even made it worse.

But my skin remained itchy all over. So I live with constant itching. Two months ago, the rash flared up, I still have it, been to my GP, given Atarax at first which made it worse. Went back, given Cetirizine 3 a day, Ranitidine one a day plus Monteleukast if that didn't work. Before I had the chance to even take that, I had to be rushed to A & E a few days ago because the rash was creeping up to my throat and head and I felt my tongue tingling and had a fat lip. Put on IV Piriton, steroids, sent home after 6 hours with a 5 day course of Prednisolone steroid tabs. Still had the rash but it went down and for ONE DAY I WAS TOTALLY ITCH FREE. BLISS.

But it's now back again and I'm feeling really desperate. I work in a psychiatric hospital, my job is stressful, I can't concentrate and can't afford to make mistakes in my work. I have no social life because I look like a cross between a leper and a lousy dog! And most days I just feel that life isn't worth living if I have to continue like this. In fact I don't WANT to live if I have to live with this. That's how bad this skin condition makes me feel. And that's what I'm going to tell my GP next week when I see her because they have to really sit up and take notice where this CIU is concerned and stop fobbing us off with 'it's not life threatening, it will pass, it will burn itself out eventually'.

Thanks to all the posters here for their contributions about what has or hasn't worked for them.

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  • Posted

    was given ibuprofen to relieve me of cramps after child birth and other post natal drug. I was given a month supply with I used judiciously for up to a month. One day I woke up to see some redness on my skin and it was itching. It later spread to other part of my body my ankles and arms. It continued for up to a month before I realized it was hives. On that faithful day I was about using the ibuprofen and the other drugs. I took my instructions book and read and I discovered that I have overused the drugs and I might be suffering of hives. I immediately called Called my health care provider and she has me to stop using the drugs, that the hives will go. I waited for the hives to go buy to no avail. I Google about hives and the cure for it. I realized there was no real cure. It was a 50/50 chances even with drugs. I tried benadryl which help a bit but the hives persisted. I also used piriton which help dry up the hives but it kept coming back.

    One day, I sat down to think about my life and was scared it could be life threatening for me. And then I remembered the creator of the universe. The one who create the blood and water, the one who formed us in his own image, the king of all kings, the alpha and omega, the one that knows the beginning from the end. And so the spoke with my creator to take away this hives and asked for forgiveness of sin. I prayed into water that he should turn the water to the blood of Jesus and I drank it with faith. I did that for two to three days and so my healing began. Like joke the itching reduced, redness and swollen reduced gradually and here I got healed permanently.

    I got healed I thank God. For you to enjoy the benefits of healing. You have got to re- trace your step to the maker. Jesus Christ. He alone can heal completely because he is the creator. I beg you that is reading my story. Kindly accept Jesus as your lord and Savour. This are end times. All sought of things are happening everywhere. Making heaven is imperative so as not to go to hell. Everything the Bible talked about the end time are happening.

    Jesus loves you and came to die just that you and I may be saved and inherent eternal life. A simple prayer as lord Jesus I know I am a sinner, by your mercy kindly forgive me, I accept you as my lord and Savour with my heart and my mouth I confess you are lord over my life.

    It that simple. God bless you as you make the right decision today.

  • Posted

    As a newly enlisted candidate for CIU I'm shattered to be told at every turn that it's a condition for which there is no cure and little or no remedy. The descent into hell seems to follow a traditional path being antihistamines and steroids and then a life of straws. 

    My kick off or trigger appears to have been generated by a combination of surgery, a very bad chest cold and possibly opiates post surgery at the one time. The flu appeared at post op day two and ran for 10 days. The rash first appeared on post op day 2 and gradually got worse until it was all over except for face feet and hands. Been that way for 5 weeks and much worse at night. Nothing seems to work in terms of remedies and from what I read this is as good as it gets. The prednisone was great and one or two days is bliss but the condition has its revenge and comes back in spades. I cannot believe that CIU isn't up there as an objective to cure. If our understanding of the Immune system is limited to accepting that Idiopathic means life of hell then maybe going to Mars or the Moon should be put off for a while. I haven't endured the years and years of agony which seems to accompany this condition but just a couple of months leaves no doubt that this is a terrible terrible bit of body malfunction which deserves the full focus of medicine. Maybe the answers may be in Natural remedies of which there appears to be as many as there are leaves on a tree but surely an individuals presentation covered in welts and a craving to shred the skin off your bones is worthy of real attention. I am wondering if the statistics as to the numbers of sufferers are really known so that the profession can allocate resources and do better than telling us to read up on hives.

    Meanwhile it seems our lives are on hold.

    Another sleepless night and another wasted day.

    Where to next ?

  • Posted

    Hi

    I totally aggree with you, you see all these adverts, donate,, and nothing for Urticari.

    • Posted

      Hi Dave......yes true.

      I don't know what your CIU status is but I appear to have achieved almost total relief either by accident or good fortune using a combination of goodies prescribed to me by one of my daughters who is a nurse.

      Daily: 1 Vitamin D3 1000IU 15ml Olive Leaf Extract, Zyrtec and Claritine daily 12 hours opposed. Double Strength 64B Probiotic. 3 grams Vitamin C.

      Skin Treatment using Aloe Vera fluid liberally applied a couple of times a day.

      Vitamin E and Primrose oil cream once a day.

      Extra Virgin Olive Oil topical as well from time to time.

      Lemon and Ginger as a Tea.

      So I am sort of in remission and am hopeful.

      It's a terrible condition and totally debilitating.

      It needs a lot more attention from the research end of town.

      Shows how little we understand about the Immune system.

      Please keep in touch. All the best to our group.

    • Posted

      Thank you for sharing those goodies with ,us,wish you to be completely free from hives.
  • Posted

    Hello, I have suffered from hives for years and had no joy with the nhs. All the nhs do is medicate me with medicine that have done nothing to help apart from give me indegestion. I'm actually considering paying private now as the nhs are a waste of space.

  • Posted

    Hello,

    Been suffering with it a couple years here. Went through the same hoops a lot of us have been through. While I had insurance, before they jacked up the cost, was on xolair for a time and it made it manageable but not nonexistent.

    My symptoms were possibly severe? I'd itch and where I scratched would form a plate of welts about a quarter inch thick.

    Not being able to afford the doctor cost and the cost of the shots ($2000 a pop) left me in a bad place.

    Did a lot of reading like most of us and found some useful and not so useful info.

    What works for me, didn't cure it but makes it manageable to a point. I still have to avoid prolong pressure to any part of my body, which makes work impossible but I'm not scratching myself into plates of welts armor or going insane from crazy itching.

    My regiment:

    1: no sugar and minimal carbs. We release a histamine with insulin and insulin is released to break down sugar. Unused carbs turn into sugar so I minimize that the best I can.

    2: before bed, I take 2 of the pink pills (benedryl or the cheap Walmart knock off), 2 ibuprofen, and a chopped up clove (small part of a bulb) of garlic. Wash all that down with a drink. Pink pills, not so much for hive relief but more for sleeping through the night. If it helps the ciu then yay, but it never really done much good. Ibuprofen and garlic for swelling mostly. Clove and ibuprofen when I wake up.

    With that, I rarely itch. I do swell when trying to work and I get momentary itch spots but the itching subsides in a couple hours. The swelling takes a couple days to fully go away.

    I worked on a couple small engines a day ago and my hands ballooned. Got two itch spots but they subsided. Swelling is almost gone. This regiment has been nice to my stomach vs what the doctors have been shoveling down my throat.

    Hope this helps and least one person get their sanity back a little.

  • Posted

    about a minute ago

    I began experiencing physical urticaria in March, with a rapid onset after a surgery in which a metal implant was used to correct a broken wrist. After being prescribed to high dosages and mixes of Prednisone, Zantac, Xyzal, Allegra, Singulair, etc. I was approved to start Xolair in May. The results were tremendous and I was able to get approved for the Copay program (does not depend on income). After living 30 years of my life with very little issues, the rapid onset after surgery led me to have the implant removed this last Friday. Post-surgery I have had NO hives. My surgeon, PCP and Dermatologists all told me it was a one in ten million chance that I was having a reaction to the alloy metal. However, my amazing Allergist (who initially led me to Xolair) let me know that studies on metal implant allergies are so limited and difficult to diagnose. I was lucky that my symptoms from the allergy were so quickly evident that it became very easy to point to the implant as a potential cause. I would urge anyone who has chronic urticaria and a metal implant to consider this rarely diagnosed cause! 

  • Posted

    Gracie,  I see you posted 4 years ago.  I’m wondering how you are and if the hives are now gone and how you got rid of them. Everything you wrote above is exactly what I’m going through since June and it’s now almost December.  I can totally relate to everything you posted. 
  • Posted

    I've been suffering with this for over ten years and every exact detail that you have described and provided you are absolutely dead on. Most of the time they give me steroids and that's about it. But it never seems to go away. I only had freedom from this for 9months because I was pregnant, it never flared up, but a month after delivery, it has came back and has yet to burn itself out

  • Posted

    Can I ask do you or anyone else on here suffer from severe pain around all the joints too. I was told it’s inflammation due to delayed pressure Urticaria inside my body. I have been diagnosed with chronic urticaria, chronic angio- oedema and chronic delayed pressure urticaria. My rash and itching has been free 3 months which has been wonderful but recently I have noticed my eyes are starting to swell, fingers, and all joints, but the pain in my hips and legs are unbearable that I’m having trouble walking. So another trip to the doctors as I don’t have an appointment till February with my dermatologist and once again sorry can’t help you as we know nothing about this illness. Any advice would be good.
    • Posted

      It could be due to Angiodema. But I would get checked out for Rheumatoid Arthritis too, just to be safe. It is a sister condition of Urticaria so worth checking. I've read that Vitamin D + Magnesium are potentially helpful in both conditions too. I'm not saying it is Rheumatoid Arthritis, but I would get it checked out, if I was you.

      If your dermatologist isn't an immunologist, I would try to get referred to an immunologist. Don't wait too long, as some of these conditions are degenerative meaning damage could be being done to your joints.

      At any rate, the treatment is fairly similar to Urticaria treatment (immunosuppresants).

    • Posted

      Well Michelle07282,

      It sounds like you're at the end of your rope : ( 

      Hang in there. Help is available but comes with drug side-effects such as elevated blood sugar (pre-diabetes or diabetes), dry mucous membranes, insomnia, and increased risk of infections d/t the suppression of the immune system w/drugs like prednisone, methotrexate, or Cyclosporine, which are drugs known as immunosuppressants. The best physician or GP is someone educated as an allergist/immunologist; you should seek a referral to one ASAP. They have heard of CIU, and most treat it with similar drugs to rheumatoid arthritis (RA), SLE (lupus), and Crohns or ulcerative colitis. The cause of CIU is a defective inflammatory/immune response to harmless substances. There are 3 proposed mechanisms causing CIU. 

      1) A Type I [immediate] hypersensitivity reactions b/c of the antibody, IgE. The body starts recognizing harmless substances as antigens (foreigners), which stimulates antigen-specific IgE production against the antigen. Chemotactic factors (small molecules) released from WBCs act as a chemical stimulus and attracts macrophages, IgE antibodies, mast cells, basophils, and eosinophils producing HIVES & Angioedema.

       2) Arachidonic acid & Lipoxygenase Pathway derived from WBCs (neutrophils, eosinophils, basophils, and monocytes), macrophages, and mast cells become leukotrienes that are part of a signaling pathway leading to acute inflammatory reactions; thought to be responsible for the symptoms of asthma and CIU. Singulair [montelukast] blocks leukotrienes and reduces the symptoms of inflammation. Research indicates that this pathway may be responsible for most cases of CIU as a result of food-additive-induced reactions.

       3) Direct mast cell and basophil stimulation prompt the release of histamine and other pro-inflammatory chemicals from these cells in response to food-additive-induced reactions; the hives & angioedema may be immediate or delays by several hours to several days after consumption.

      Sources: Current Allergy & Clinical Immunology, 2004, Vol. 17, No.1, Wikipedia

      As an RN/FNP, I would caution anyone against taking high doses of minerals (iron), vitamins (B12-methyl) and even some of the OTC drugs used to treat Chronic Idiopathic Hives (ranitidine/Zantac) without 1st speaking with your PCP or specialist. Get baseline and periodic lab work done every 4-6 months to include CBC w/differential, chemistry and liver panel to determine if you are anemic (from an iron, folate, or B12 deficiency and/or thalassemia) and to measure your kidney and liver function both before and after taking medications. The provider can also measure your Vit B12, Vit D, iron stores, thyroid function and lipid levels. No point in damaging your body trying to treat the hives. If your provider doesn't do the most basics of good medicine/practice, run! Be sufficiently EDUCATED.

      Taking too much iron can lodge in your vital organs (enlarged liver & heart) and tissues b/c your body has no mechanism too get rid of extra iron; the iron component of RBCs is always recycled unless it is lost via blood loss (e.g., menstruation or abnormal internal bleeding). Some of the suggestions here point towards a lack of understanding in human anatomy, physiology and pathology.

       

  • Posted

    Great to find this group as Ive only had Urticaria for 1 month now. It came over night and hasnt left. Doctor prescribed Loritadine and then Fexofenodine. Neither has done alot for me - basically just calms the stinging/itching. I have been to a relative who is a homeopath and she has suggested that the CIU is a result of a weak digestive system and/or leaky gut syndrome which has led me unable to digest gluten and leads to outbreaks.

    For the last week i have cut out my medication and went 100% on natural remedies. Ive been taking Bromelain, Quercetin, Vitamin C and Tumeric capsules. Along with these i have went gluten free and am also eating anti histamine foods such as blueberries, teas such as nettle/ginger/chamomile. I am also using a cream called Allergenics soothing body lotion which helps with itching at night.

    Results so far have been good, the CIU is definitely reduced and i had little or no hives up until tonight. I had a bad break out and i blame it on oyster sauce i had for dinner, which i now know is a shellfish and in turn is a high histamine food.

    Hopefully i will continue to see more results with the natural remedies and will let you all know if they work! 

    Thanks

  • Posted

    I see this post is still active. I suffered and still do on ocassion with chronic urticaria since I was a teenager, I'm in my forties now. I tried all over the counter itch remedies, oatmeal baths and constant medical doctor visits I would receive a variety of prescriptions for. Nothing i tried worked for long or worked at all to relieve my itching. It was so bad at one point i had chronic itching litterally from head to toe. About 5 years ago i swore of seaking traditional medical help since it wasnt helping. I instead switched to eating a whole foods diet, eliminated gluten from my diet. That alone greatly reduced my itchiness. I also took tests with a nutritionist that showed I have adrenal and hormone issues. My mineral balances in my body were also off. Going through treatment to correct those imbalances also helped. I now pay attention to the foods I eat and how I react. I'm noticing I believe I react to oranges, bananas and mushrooms since I have chronic hives develop soon after eating them. If you are suffering from chronic hives or urticaria and have not explored how you react to foods or if you may have a nutrition imbalance, you may want to travel that road to find relief.

    • Posted

      when you are dealing with hives you should avoid foods and medicines that make the hives worse. The following should be avoided. Ibuprofen. Antiacids. Alcohol. Caffeine. Look up foods high in histamines, which can also make hives worse. Black tea, bananas, citrus, avocados, etc. I didnt know this at first. Once i stopped consuming these the hives were more tolerBle, they didnt get so out of control. I was gettimg them from head to toe.

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