so fed up and frustrated

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I've been suffering from chronic Urticaria and Angiodema for approx 5 years . It's been so bad that I've had to visit A&E lots of times put on IV steroids and then sent home when it goes down and then fobbed off with antihistamines . Doctor is no help whatsoever and doesn't want to refer me again for allergy testing etc ... I end up looking like a freak when my face swells up I'm too embarrassed to leave the house ! The only thing I can think it could be is that I have thrombocytopenia which is a blood clotting condition . Could this be the underlying cause ?

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  • Posted

    Hey Katy how are you ? My name is Cris and iam wondering how you doing with your urticaria and agiodema ..me I can't take it for much longer iam stuck at home with itchy hardcore hives all over my body I can't wear any clothes I was for years on steroids I had to stop them due bad side effects now there is only one more cure left to try and it's the injection but it's very controversial has got death a a side effect so not in a hurry to take it but in the meantime my life it's ruled by hives ..gonna check again for thyroid problems and try different antihistamines and maybe vitamin d I read that helps anyway I hope to hear from you take care chris

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    • Posted

      I Know how you feel. Mines flared up again but not to the extreme of not being able to not put clothes on . I feel for you . I accidentally caught the sun yesterday and got a bit burnt and it's caused the hives to flare up on my arms . So hard not to scratch . Maybe I will look into trying vitamin D as well . Thanks for the advice. Hope you feel better soon . Katy

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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.

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  • Posted

    Hi Katy, I'm sorry you are suffering. It is a horrendous condition that is very debilitating and mentally draining. I am 18 month in and boy has it turned my life upside down. Like you often unable to leave the house, feeling embarrassed that I look like I've had Botox gone wrong with dodgy eyes and wonky swollen lips. Unfortunately antihistamines do not fully control itfor me, so I am looking into the Xolair injections next. I have been told several times by my immunologist that I am not allergic to anything and there is no underlying cause (had all blood test and allergy test), he said people often drive themselves insane trying to figure it out. I'm slowly starting to come around to the idea that it may be better for me to accept I have this condition and focus on the treatment.

    I trailed a low salicylate and histamine diet which has helped. I spent 3 months cutting foods out and journaling, this had helped me pin point foods that make my hives 100 times worse. I do much better avoiding these foods. But I still have hives daily.

    I feel for you and hope you are close to finding the best treatment for you. I take one day at a time and try to focus on the positives whenever possible.

    Good luck x

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    • Posted

      Hi Sebastian thanks for asking after me. I have interestingly had a good few months until this last few weeks. I'm 24 weeks pregnant and I have a strong suspicion that the pregnancy hormones have been helping my hives massively! I had a whole month without any and then some very manageable ones until 2 weeks ago and they ah e started back up badly. I am booked in with immunology for injections after my baby is due and for now must manage without medication as best as possible. I am still allowed to take my lototadine. What I find odd is that the month of hive free cake after stopping antihistamines for 5 days prior to my immunology Appointment. I wonder if my stopping antihistamine I have my body a break and they became effective again, or I am infact reacting to them also as they Build up in my system! Either way I'm trying to stay positive because being pregnant with hives isn't much fun! How are you? 

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    • Posted

      Hopefully it all turns out well. I am hives free though. A little over 2 years now. Therefore I am confident that everyone here will be free of this. Mines went away with lots of prayer and great doctor
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    • Posted

      I agree, there will be an answer and a time when it will go for good. It's been nice to have a couple of months free from hives, as a mental break more than anything! That has always been the part I've found the hardest, how depressing and isolating the whole thing can be! Still must keep going! 

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  • Posted

    Hi Katy, I have recently seen a specialist in Harley street London as all medication has failed my chronic spontaneous uticaria and delayed pressure uticaria. We have spoken about a injection of something called dapsone. It's actually for leprosy. It's recently been proved to really help but it's cost the health system £565 each shot so they don't tell you about it. I'm waiting for some more results to come back then I'm going through guys hospital London for the injections. I have also been diagnosed with diverticlar disease today.  Hope this helps open some doors for you to discuss this treatment.

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    • Posted

      I'm not sure. It was a recent study that my consultant/dermatologist had done. I believe they said it did make a difference but not cure. All I know is that it's actually made for people with leporasy. I think it may be completely different as I have received a letter from him saying I should have these  omalizab injections along side the dapsone.  I'm visiting the doctors today so will update you. I'm also still waiting for some bloods that was taken and sent to Denmark from London, to see how high my histamine levels are, so need to chase them.

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    • Posted

      Yes I'm just about to have the same injections along side methotrexate. I'm also chasing my blood results from Denmark that I had done at Harley street. It's been about 3/4 weeks and still not back. Let me know how you get on with the two medications.

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  • Posted

    Hi Katy,

    I hear your frustration and can only wish you the best. Everything, I've read from the evidenced-based literature is that Chronic Idiopathic Urticaria (CIU) is idiopathic- meaning the etiology unknown. Doctors and other healthcare providers (such as myself) do understood the body's reaction to allergens via the innate and humoral response to injury and illness. CIU involves rogue IgE antibodies, macrophages and mast cells that overreact to something or nothing in our bodies causing the release of H, called a Type 1 hypersensitivity. Some people's hives and angioedema is caused the an abnormal neutrophil reaction vs IgE driven. They don't get why some get  Lupus, Ulcerative colitis or rheumatoid arthritic (RA), which are all auto-immune diseases where the body fails to recognize its own tissues and makes antibodies against it. Hives is an abnormal immune response- it's treatment is similar to RA, asthma and other autoimmune diseases. I've been in healthcare mainly as an RN for 22 years and just completed an MSN in Family Nurse Practitioner, and I have never met anyone with a history of chronic hives like mine. It's WHY I'm in this forum; I live in the USA, where CIU is also unknown by many primary care providers. It affects 1 in 1000, which I think is pretty significant. A couple of my coworkers said they've had hives and that it was related to stress like that's all my problem is. I just nod my head and acknowledge in myself that my hives are not self-induced from anxiety. I'm the least axious I've ever been in my life. I also have severe allergic rhinitis, which is also a Type 1 hypersensitivity so the thought is that people like me or those with atopic eczema and/or asthma have an abnormal immune response to things that are not harmful to the body.

    As far as the medical community goes, most scientific research and breakthroughs happen by other scientists and researcher not actual primary care providers (PCP)- we just follow the research as it becomes available and acceptable in our field. My PCP sent me to the allergist for a consult within 2 weeks of diagnosis when antihistamines and short-term doses of prednisolone and/or prednisone failed stop the CIU, (acute at the time). Unless your general medical provider is comfortable treating CIU, which most are not trained or familier with, you need to be seen by a specialist: allergist, dermalogist or possibly rheumatologist- all of these specialists deal with auto-immune and hypersensitivity related illnesses. There is no difference btw what's available in the USA and UK. There is no magic formula or one size fits all approach. It's ANTIHISTAMINES first and foremost because that is the substance wreaking havoc- every other drug is trying to prevent or suppress the hypersensitivity, which as you know is not easy. Xolair injections is the only drug out there now meant to block the IgE-receptors attached to mast cells or macrophages by physically blocking the receptor to prevent the release of histamine. This blockage is not permant and doesn't block every receptor site either. So far Xolaire has not been helpful for me so it's a combo of 9 meds including prednisone that work for roughly 12-15 hr daily- I have mild hives/angioedema the rest of the time just not as bad as the intial outbreak, which was severe and extensive.

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    • Posted

      THIS is the spell-checked version

      Hi Katy,

      I hear your frustration and can only wish you the best. Everything, I've read from the evidenced-based literature is that Chronic Idiopathic Urticaria (CIU) is idiopathic- meaning the etiology unknown. Doctors and other healthcare providers (such as myself) do understand the body's reaction to allergens via the innate and humoral response to injury and illness. CIU involves rogue IgE antibodies, macrophages and mast cells that overreact to something or nothing in our bodies causing the release of H, called Type 1 hypersensitivity. Some people's hives and angioedema is caused by an abnormal neutrophil reaction vs IgE driven. They don't get why some get Lupus, Ulcerative colitis or rheumatoid arthritic (RA), which are all auto-immune diseases where the body fails to recognize its own tissues and makes antibodies against it. Hives is an abnormal immune response- it's treatment is similar to RA, asthma and other autoimmune diseases. I've been in healthcare mainly as an RN for 22 years and just completed an MSN in Family Nurse Practitioner, and I have never met anyone with a history of chronic hives like mine. It's WHY I'm in this forum; I live in the USA, where CIU is also unknown by many primary care providers. It affects 1 in 1000, which I think is pretty significant. A couple of my coworkers said they've had hives and that it was related to stress like that's my entire problem is. I just nod my head and acknowledge in myself that my hives are not self-induced from anxiety. I'm the least axious I've ever been in my life. I also have severe allergic rhinitis, which is also a Type 1 hypersensitivity so the thought is that people like me or those with atopic eczema and/or asthma have an abnormal immune response to things that are not harmful to the body.

      As far as the medical community goes, most scientific research and breakthroughs happen by other scientists and researcher not actual primary care providers (PCP)- we just follow the research as it becomes available and acceptable in our field. My PCP sent me to the allergist for a consult within 2 weeks of diagnosis when antihistamines and short-term doses of prednisolone and/or prednisone failed stop the CIU, (acute at the time). Unless your general medical provider is comfortable treating CIU, which most are not trained or familiar with, you need to be seen by a specialist: allergist, dermatologist or possibly rheumatologist- all of these specialists deal with auto-immune and hypersensitivity related illnesses. There is no difference btw what's available in the USA and UK. There is no magic formula or one size fits all approach. It's ANTIHISTAMINES first and foremost because that is the substance wreaking havoc- every other drug is trying to prevent or suppress the hypersensitivity, which as you know is not easy. Xolair injections is the only drug out there now meant to block the IgE-receptors attached to mast cells or macrophages by physically blocking the receptor to prevent the release of histamine. This blockage is not permanent and doesn't block every receptor site either. So far Xolaire has not been helpful for me so it's a combo of 9 meds including prednisone that work for roughly 12-15 hr daily- I have mild hives/angioedema the rest of the time just not as bad as the intial outbreak, which was severe and extensive.

       

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