THERE HAS TO BE A CAUSE OF URTICARIA ...
Posted , 116 users are following.
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.
15 likes, 259 replies
sheila62513 gracIe53
Posted
erik51089 gracIe53
Posted
chino1404 gracIe53
Posted
Omg you poor thing!!! I feel your pain and frustration .... you literally described my life. I have no idea what to do and have given up. It makes me so depressed it's summer in Australia and I stay in door because I'm to embarrassed to show my skin I look like a freak. Has anything fixed yours? My gut tells me it is stress induced but it's not always consistent with stress. Would love to hear back on how you are going. Nicky - Australia
GcpdWife chino1404
Posted
I've had hives for over a year. My doctor and the nurses at the hospital thought it was brought on by stress. Stress definitely makes it worse but I was t always stressed when I was broken out. My skins been clear for a month now...I'm trying not to get my hope up. I'd read about people changing their diet and eating healthier, so I cut the carbs. The allergist started me on (2)Xyzal and (1) ranitidine in the morning and (2)Xyzal and (1) ranitidine at night. Both over the counter. Try it or ask your doctor but playing around with your diet and swapping antihistamines shouldn't hurt.
luka37 gracIe53
Posted
Hi, I just wanted to share my story and maybe help someone who is dealing with something similar that I had.
In the fall of 2015 I started itching really badly. I was a healthy 35 year old female with no history of eczema or allergies of any sorts. It started with my scalp down to my ankles , but never the face or the bottom of my feet or palms. I started getting this horrible rash that didn't let me sleep and looked like something in between eczema and urticaria. I was going crazy. I looked horrible and felt uncomfortable couldn't even work properly. It took me 9 stressful months to get rid of it. And I have been itch free ever since. Within that period I saw 7 dermatologists, an internist, an allergologist, gastroenterologist. Had skin biopsied twice. Did all the possible blood testing (including STD), had a chest xray. First doctor gave me a treatment for scabies. Second prescribed steroids and said it was eczema. Third tested me for celiac ( which I know I didn't have because I was tested before). I had patch testing done for more than 500 chemicals on my back, and basically it came back that I was slightly allergic to dustmites and fragrance mix. I was told to avoid everything that could cause an allergic reaction. I was prescribed light therapy ( didn't work). I tried to change my diet ( no sugar, no alcohol, no dairy and etc). Nothing seemed to work, In the mean time I was taking antihistamines ( didn't see much of the effect) and was told to use topical steroids. My diagnosis at that point remained as eczema. But my instinct was telling me that it is not, and I knew that it has to be a definite cause and reason for this. Doctors kept dismissing me saying just use antihistamines and steroids. But that only supresses the symptoms and doesn't resolve the problem that was causing my body to react in such a way. I was also prescribed prednisone which helped somewhat but once I was off of it. The rash came back with the vengence. So I looked at my blood tests and since everything was coming back normal, my eosinophils were just slightly elevated, so the first doctor dismissed it like it's nothing. Even though I asked repeatedly to test my stool. at this point I was maybe 7 months into this nightmare I asked to retest my blood again and eosinophils came back way elevated. The allergologists said that it's nothing and that just confirms that it is eczema. I stopped going to my previous dermatologist because he prescribed me a strong immunosupressant medication. I decided not to take it. It did not make sense to me. They prescribe all this medicine without even finding a true cause. Finally I found my final dermatologist who was actually the only one- kind enough to listen to me and work with me and not dismiss me after 10 min. I showed him the previous results and he agreed that the only thing what was missing that my stool hasn't been tested. Also to him my rash looked more like urticaria than eczema. I submitted my parasite and ova test. And it came back positive for Blastocystis hominis. Well, here is the controversy, in United States they don't consider that to be harmful, but there are numerous medical articles from all over the world to show cases that people had bad symptoms from this tiny microscopic ameba that can infect your gut, including cutaneous manifestations. I did my own reserach and read everything possible about it. The doctor prescribed me an antibiotic ( flagyl), but I told him that I was doubtful about this antibiotic helping since I read that it only helped in maybe 30% of cases. He told me to try it anyway since it is a first defense antibiotic. It did not help. Next time I took Nitazoxanide and Sulfamethoxazole together and guess what?! My symptoms of unbearable whole body itching and rash cleared up and hasn't returned since.
The moral of the story, if you have similar symptoms to mine keep searching and find the cause or at least probable cause first. They only give you medications to supress the symptoms, but that doesn't solve the problem. In my case was this Blastocystis Hominis that was causing my immune system to go out of wack. When I consulted another doctor afterwards he said; " thank god that you did not take cyclosporine because that would have made everything even worse. Under the suppressed immunity those parasites would have flourished even more."
I hope this helps!
GcpdWife gracIe53
Posted
So I've been living with hives almost daily for over a year. I've been on tons of steroids, steroid shots, I've been hospitalized and now have an epipen and an inhaler it's been extremely frustrating. Antihistamines didn't seem to help much. My last appointment with my allergist they started me on (2) Xyzal in the morning and (2) Xyzal at night...paired up with (1) ranitidine in the morning and (1) ranitidine at night. I had also read about people changing their diets. I've been so miserable I gave it a shot. I cut the carbs down to start with. So far so good. I haven't felt this good in a year...tho I admit I'm a little nervous they aren't gone for good. Quality of life was suck! Hopeful that things will remain on the up and up....and Xyzal and ranitidine seem to be a good combo this far!
alicia08986 gracIe53
Posted
Hi
Im also a CIU suffer and I totally agree with everything you have said. Firstly I totally feel your pain on this 1!
I have been sent for many blood test and all came back as insignificant. I keep be reffered to this persona and that person and get fobbed every time. My gp is not concerned at all as they arent as its not love threatening. I also get the angedomina and been to a&e a few times but at the point now of what is the point. I get given the steroid tablets and steroid injections the last injection i had in my bum lasted two weeks. Completely hive free and then bang they were back with violence. I have no ideahow us sufferes can deal with this when my face sweeps up my lip first my head even sweels and the my face and head go all bumpy. I have no hair so this is defienltt not a good look haa.I take 180g of fexofenadine 3-5 times a day, i take deloday 2x in the morning and evening, i take the monteculakast tablet of a night and benadryl 3-4 times a day these atill,don't work .
Im not to sure as i haven't really read any one try it but the only,thing that actually seems to work as strange as this may sound is aloe vera gel. I literally smother myself in it 3-4,times when i have bad flare ups and on a normal day i apply It to the effected area. Its a natural anti inflammortary and it actually does start to make the swelling and redness dissapear. It cools and soothes the skin so i immediately,stop itching its a dragged process constantly applying it but it actually really helps more than taking a thousand tablets. If i,can suggest anything i say but some aloe vera even though we have the condition for a while (fingers crossed we wont),anything that may help is worth a try and i defiantly reccomend it. Let me know how you get!!,
Alicia
michelle07282 alicia08986
Posted
Hi Alicia, I have also been on all the meds you have tried along side methotrexate 6 tablets a week on a Thursday and I'm still reacting. I have chronic spontaneous urticaria and delayed pressure urticaria and apart from top consultants in London who know what they are talking about, my local doctor is clueless and the entire surgery. I'm am in the process of being sent to guys hospital in London recommended by a great dermatologist I met at Harley st dr Clive gratthan and will be starting dapsone injections. Weirdly treated for leporasy? But has been proved to control this illness. I believe it's not given out so easily as each shot costs £585, so if you live in England the Nhs dontry to keep this quiet. Clive gratthan specialises in chronic urticaria and mastocytosis so really knows his stuff and the top dermatologist in England. I saw him privately and well worth the visit. At least now I can get new treatment via NHS with more knowledge of what's out there.
ayda michelle07282
Posted
Hi Michelle. I have exactly the same as you csu/dpu which I have had for 8yrs now. My consultant at st.thomas is Dr GRATTAN. Is this the same Dr you are quoting, Dr gratthan. Both guys/st Thomas are linked. I have been going there at least over 6yrs. I have been on various medications ie methotrexate dapsone cyclosporin to name just a few. I have have 2x courses of omazibub (xolair shots) but nothing has worked. I have also developed osteopenia (brittle bones) from using prednisolone (steroids) which does calm it a bit but no good for long term use. I've been on this site for some time and I have tried all and everything that everyone has suggested in the hope that I find something that works. Alas to no avail so always come back to square one with nothing working. Doing voluntary work 2 days a week at the moment I so want to go back to work but barely do the 2 days as off sick. I really suffer with the frenzied itching and my wheels and lumps are painful unfortunately mostly my hands and feet suffer. Affects me walking and my hands obviously affect everyday daily stuff. I haven't tried private but from what you are stating they are not going to help me either and you will be going to guys/st Thomas hospital where even I have not found relief. Even though I am still suffering , I hope you find something that helps you and works for you. It's true there is not enough research etc done for urticaria sufferers only for well known illnesses. There is no fundraising Nothing because this is unknown to a lot of people and very difficult for people to even understand it. We really All need to get together and do something because this suffering needs to end as this affects us all and has caused many people like myself to have a very bad quality of life!!
michelle07282
Posted
Hi ayda, yes he is the same consultant. Wow it's so nice to hear from someone who has the same condition. I feel like most days I'm going out of my mind with all this. No one understands, friends, family, or even my doctor. It's makes you feel like your just left alone to get on with it. I desperately want to go back to my career but worried that I cant commit with days I'm looking and feeling awful. I'm getting married next year and worried I'm going to either swell up or be covered in hives, especially with a great big wedding dress on. Methotrexate is making my hair fall out in handfuls. So yes the image is lovely in my head for that big day. But hey you just have to keep smiling. How are you coping Day to day? I've only had this since February and only recently had a few days free of chronic hives from head to toe, and swollen face. 8 years is such a long time I really feel for you. I feel so depressed at the moment and it's still early days for me. I do try to stay positive but it's a struggle. Do you know many people with the same illness as us? Your the first person I have come across. It seems that America is more up on this illness. Where I live in Kent the doctors haven't got a clue. Bless them they have tried but have been honest at least.
ayda michelle07282
Posted
Hi Michelle thanks for replying. I am an identical twin and we both have this. Funnily my twin got it about a year before me so I was expecting it cos we normally have the same ailments at the same time. I was spring cleaning one day which involves a lot of scrubbing etc the following day I woke up to tons of hives from head to toe. I instinctively knew what it was before being officially diagnosed. Anyway I went to see my gp who referred me to st.hellier hospital in Sutton as I was living and working in Thornton heath at the time. Not much happened apart from them giving me prednisolone. After a short time I was referred to Dr grattan at st.thomas where I am now part of the furniture. No doctor can help with this as they are not experts on the subject. I was in Bromley Kent before moving to barking. I also left my job of 13yrs with dwp and took a voluntary redundancy. It was that or get sacked. I used to use up my sick days and leave. It does affect your life in a big way. And you are right in saying a lot of people don't understand. Sometimes you even get the feeling that they think you are a liar. It affects my social life also but I do have a positive mind. If it wasn't for that and my 2 kids/2grandkids I've felt like giving up many times. I've had enough because it is year on year. But everyone is different. I hear some people saying certain medications are working for them whereas it's not working for someone else. I don't know how much you know about this condition but there is a lot of different types and different levels of severity. I hate having this played down like it is nothing when in fact it is everything. I have to change the way I think the minute I leave my home, how am I getting back home if I have a flare up, what types of shoes and clothing I can wear that is not going to affect me. Practically anything I do. I am happy to be used as a template ha ha if you want to take notes etc or compare similarities etc. Anything just ask. Good luck and hope you find something that works. X
michelle07282
Posted
Hi ayda,
Bless you, I get the part on giving up. I'm 43 and have two lovely children that keep me going but like you said about your twin having it also, i do worry if this will be passed onto my children. I will update you with any new things I hear about, but you have probably tried all of them. I wish you and your sister all the best and keep in touch. It really has made a huge difference in my life knowing there is someone else out there who really understands. And that's half the problem. So thank you x
mimoza35751 gracIe53
Posted
Hi,Grace ,I like so much what you are saying about doctors.
I have the same story as you,everything that are suffering that you are going through is like I see my self in your words.
Nobody can understand how much we suffer,because they don't have the same thing,.
One thing that I am so mad,I don't understand how can this happened in developing countries like Canada where I lI've,they can't find a cure,they just laugh and say,"Oh this rushes is hives,we can't do nothing ,just go on your forum and see,and take cetirizine ".Before this hives came to me ,I was suffering with anxiety,now I am very depressed,I take antidepressant but they are not helping me with my mood,hives are drying me nuts,anywhere I traveled I become very sick,had anaphylactic many times,and who is going to help us,now one.
My life has been a miserable for six years,I have to children that I need to take care ,but I am very tired ,sleepy,not in good mood,when I see how much swollen are my lips face,and seen my self many times in emergency and again ,again with no hope.
They are so many doctors studying ,inventing,we are donating many for many inventions but nothing has been find ,no cure,people are suffering for decades with urticaria and no hope,they must find something.
mimoza35751
Posted
Hi,there,I read your story,and is true everything you said it looks like I wrote it myself.I have been suffering for six years ,and no cure,but one think that I believe may be the cause of hives in us it is anxiety depression sufferers myself I suffered from anxiety after giving birth to my daughter 6 years ago,and hives started now from this condition I suffered from depression ,because only one I think. I will wake up tomorrow again with the same story ,I go nuts I don't feel like doing nothing if I can't help myself.One thing that lately came in my mind is ,I will have to try putting leeches in my feet,is not easy ,but what is left?I remember when I was little my grandma used to dò leeches therapy every year,and she died 100 hundred years old.In my country which is somewhere in Balkan,they believe that those little worms suck our toxic blood only.I must do it hope it will help.Wish you all the best and hope you would like my suggestions.
cindy09985 gracIe53
Posted
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.