¡Hola! Soy nueva en esto, durante los últimos 2 meses he tenido ronchas similares a urticaria y manchas rojas con ardor e irritación en todo mi cuerpo. Aparecen ronchas brillantes (parece que me he quemado con una plancha para rizar) en mi cara, brazos, pies, estómago y espalda. Si no son ronchas, tengo simplemente manchas rojas brillantes que arden, hormiguean e irritan. He estado tomando fexofenadina durante aproximadamente un mes y al principio funcionó, pero ahora solo apenas alivia un poco. Estoy desesperada y miserable, si alguien tiene algún consejo sobre lo que puede ser o cómo tratarlo, por favor házmelo saber. ¡Gracias!
Hola Aleise, ¿qué dice tu médico? ¿Han sugerido ver a un especialista? Los médicos generales no tienen ni idea de qué es la Urticaria Crónica Idiopática (o Espontánea) y cómo tratarla, ¡así que no les dejes engañarte! Si estás en el Reino Unido, el médico de cabecera puede derivarte a un especialista fuera de tu zona y hay uno en el Hospital Sheffield Hallamshire, una dermatóloga llamada Dra. Sabroe, es una especialista de primer nivel para la UCI. Si tu médico se niega, busca el servicio de asesoramiento al paciente más cercano y ellos te ayudarán, puedes encontrarlos en Google. Estuve con ciclosporina durante seis meses, lo que lo aclaró, pero podrías tener algunos problemas de salud que han desencadenado esto. Podría ser un brote de gripe, enfermedad, estrés, problemas intestinales pequeños y cambios en los niveles de estrógeno, todos podrían ser un factor. También hay un tratamiento llamado Xolair que es efectivo para algunas personas. Si estás en otros países, probablemente haya un especialista al que tendrías que buscar. ¡Mucha suerte!
Hola Lorraine, gracias por responder... Estoy en los Estados Unidos y no tengo ningún tipo de seguro médico. Tengo 29 años y no tengo otros problemas de salud reales. No puedo llegar al fondo de esto por mi cuenta. Fui al médico una vez y pagué de mi bolsillo, y todo lo que hicieron fue darme una inyección de cortizona que no ayudó... Solo estoy desesperado por descubrir qué puede estar causándolo, esto ha tomado el control de mi vida.
Hola, va a ser difícil para ti si no puedes acceder a especialistas. Necesitas buscar una dieta baja en histamina, además debes tomar multivitamínicos, en particular, vitamina D y B12 metilcobalamina, de las cuales otras personas en este blog juran y que yo ahora estoy tomando. Asegúrate de cuidar tu salud y revisa tus niveles de estrógeno. He encontrado que bañar las ronchas con agua muy salada reduce considerablemente la picazón. Hay otros antihistamínicos como la cetirizina y la loratadina que pueden ayudar, pero sin asistencia médica puede ser difícil lograr una remisión. Es posible que necesites esteroides como la prednisona, que probablemente te costará. Intenta reducir cualquier estrés que tengas, ya que es un gran desencadenante. ¡Buena suerte!
Good advice from Lorraine34338. As an interim measure, although the Fexofenadine is supposed to be only one a day, my doctor said I could double the dose if necessary and I have had to. I've also used hydrocortisone cream in addition when it's really bad (but not on the face).
Sí, he usado la crema de hidrocortisona y también uso gel de difenhidramina, puedes conseguirlo en la farmacia, funciona bastante bien pero deja una película pegajosa en la piel.
Hi there
Great advice from Lorraine. Just another point - when you find a specialist, ask them to check for auto immune disease as that could be another trigger.
Agree with Lorraine, using a normal GP to help you with CIU is absolutely useless. They don't know enough about it - even the specialists struggle. You need an allergist or an immunologist.
Sometimes its impossible to find out what the trigger is for your CIU as it could be a combination of factors. Alcohol is a no no as it makes it much worse. I was on holiday recently and did wine tasting and Ive had a major flare up of note, even whilst on Xolair, Prednisone and 4 x Fexo per day.
Good luck!
Sí, noté que el alcohol empeora mucho las cosas. Tomé una copa el fin de semana pasado y me sentí miserable. Necesito ponerme las pilas y conseguir un seguro médico. Solo tengo 29 años, esta debería ser la mejor época de mi vida y en cambio no puedo ir a ninguna parte porque mi piel se inflama y no puedo dejar de rascarme. No he cambiado ningún jabón ni detergentes, ni he usado nuevos productos que puedan causar una reacción, pero de repente apareció un día.
I know it's extremely frsustrating. I'm suffering from a BAD flare-up at the moment despite having paid R10 000 for a Xolair injection (I'm in South Africa).
It really does take over your life. Im covered in scars from the scratching (can't wear short sleeves). But Im trying to stay strong physchologically and remember that many other people suffer with worse. It's not easy though when you are itching out of your mind!
But at least you know you're not alone.
Being on this forum definately helps
Hello from uk,
I have been suffering for last 12month. I agree with what everyone has said.
My immunologist has prescribed me 4x the normal dose of fexofenadine so it is ok to take some extra antihistamines to see if it helps.
I react massively to food and it's worth also looking up salicylate sensitivity and consider trailing an elimination diet. Alcohol 100% makes it worse (it is high in salicylate, histamine and sulphites!). I've lear t the hard that it really isn't worth it!
I have found Epsom salt & bicarbonate of soda baths help (don't have the water too warm).
The biggest impact for me is emotional/psychological, the constant itching which leads to wishing it would go, feeling down, withdrawing and staying in bed which I find makes it even worse. Again I have learnt this the hard way but now I try to get up out of bed straight away and try to carry on with normal activities and rest when I need to.
I have just finished another course of prednisolone to get it under control while I wait to be referred for Xolair. Unfortunately the steroids seem to be the only thing to get it under control and gives me the psychological break I need from it! Diet has also helped me massively.
I feel your pain and hope you manage to find a solution quickly xx
Hi Siobhan
Wow - I really identified with everything you said in your email.
I was a wine tasting fundi and my favourite thing to do is visit wine farms, walk in the vineyards and have a lovely glass of wine with friends. Unfortunately this is no longer possible and its really been a psychological struggle coming to terms with that. My husband and I also love going out to eat - another struggle as Im so limited (no gluten, no sugar, no dairy, no preservatives) and it just takes all the fun out of it. It really does feel like a life sentence to extremely limited eating and drinking and, as a result, limited fun and socialising.
However I then look at the total destruction my body faces when I dont follow the correct diet with the extreme itching and resultant scarring AND I REALISE ITS JUST NOT WORTH IT.
Prednisone is the only thing that keeps mine under control. And 4 x Fexo per day. Had 300mg Xolair injection a few days ago and it didnt help. So Ive had to increase my Prednisone dose significantly for some relief. Chatting to my allergist tomorrow about Cyclosporine.
And yes, getting out of bed quickly, taking a shower, dressing the itch with cream, and getting on with your day is the only way to go.
Hugs to all CIU sufferers out there. It takes over your life and the damage and suffering definately isnt only skin deep.
Vera
Xxx
It's so hard isn't it and something that people who have no experience of just don't understand! It has a huge impact and like you I love to go out for good and enjoy nice wines. You don't feel like the same person! And it seems very unfair, but the more you wrestle with it the higher price you pay. We need to be very kind to ourselves and do what is needed in the short term for longterm recovery, best wishes xxx
You poor girl, I know exactly what you are going through! I've had CIU for 4 years and not a day goes by without it. I have tried everything (except xolair) and seen every specialist: Rheumatologist, allergist, immunologist, blah, blah, blah.. the combination of zyrtec and zantac sent me to the ER with anaphylaxis. My entire face, mouth, tongue and throat swelled - it was , well, swell! lol Benadryl has been my saving grace. Yes it does make you tired, but it allevaites the itching and swelling. Also cool showers or baths.. and a;ways have an ice pack or even frozen peas for instant relief. CIU has NOTHING to do with what you ate or what soap you used. It is an autoimmune disorder. And more people have it than you think. There are different triggers. Mine are caused by stress, pressure, heat, and any manufactured fabric. It's cotton or nothing. I can get them anywhere from head to toe inside and out. Yes, it is possible to get internal hives and angioedema (the deep tissue swelling). However, that being said, I am more concerned that you do not have health insurance. You need to have an epi-pen on hand just in case. Since you don't... keep liquid benadryl in your fridge. It is faster acting than the pills for when you feel your lips/tongue/throat swelling or just when you feel like you're losing your mind! If you are in the US you may qualify for medicaid If you are indeed diagnosed with chronic hives, you may qualify for free or reduced medication like xolair through the company if your doctor thinks it may help. if you ahve any questions or just need to vent, I am here.
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Hi,
I am also new to this. Right now I am taking 5 to 7 prescriptions a day. It is so frustrating not knowing what is causing this, so I totally understand. Have you been to see an allergist yet?
I have seen 3 allergists, an immunologist, rheumatologist and a dermatologist. I don't even know how many tests I have had. All have said it is idiopathic - meaning there is no known cause. 7 prescriptions seems like a lot to me. I have learned through my own trial and error that if a medication is not working at a low dose, it's not going to work at a higher dose. That's why I stick to the benadryl, cool showers and ice packs.
Hola, hay personas que entienden la CIU, pero tienes que encontrarlas. Muchos médicos piensan que la prednisona es la respuesta, pero la ciclosporina ha funcionado para algunas personas en este blog. Tienes que entender cuál es tu desencadenante. Si tienes problemas de salud o infecciones, como infecciones del tracto urinario, también problemas intestinales como cómo tu cuerpo procesa los alimentos, cambios en los niveles de estrógeno, estrés, todo esto son desencadenantes y una persona puede tener más de uno. Estoy en remisión, pero aún tengo una urticaria ocasional si estoy estresado, generalmente en un vaso sanguíneo, y tomo cetirizina, fexofenadina o loratadina y suele desaparecer en unos pocos días. Debes intentar encontrar un médico que entienda la condición. ¡Buena suerte!
Hi Lorraine
It's an interesting conversation actually - Im on my second Xolair injection but Im not sure if its working as Im still on a high dosage of Prednisone as well. So Im weaning off the cortisone (very slowly) to see if Xolair is in fact helping (which it didnt appear to be but sometimes takes 3 injections to see effect).
Im seeing a CIU specialist who is very concerned that I have been on Prednisone for a few months now. If Xolair doesnt work, I need to go onto Cyclosporine. But I wonder what the long terms risks are of Cyclosporine vs just staying on a very low dose of Prednisone - eg suppressed immune system with high risk of infections vs failed adrenal gland function. Hard to know which route to take..any thoughts on that?
Needless to say Im also on 4 x Fexo per day.
Vera
Estuve con ciclosporina durante seis meses con una reducción gradual y no sufrí ningún efecto adverso. Wendy en este blog ha estado con ella más tiempo y también está bien. Ambos hemos entrado en remisión. El problema con los esteroides es que puedes tener un rebote cuando la condición vuelve peor al dejar de tomarlos. Wendy está en una reducción gradual de prednisona que parece funcionar para ella.
Useful info - thanks. I think that's exactly whats happening to me - every time I come off the Prednisone, it comes back worse.
Will definately try the Cyclosporine if the Xolair doesn't work. The Xolair is frightfully expensive as well and the medical aid doesnt cover it for CIU in SA.
Thanks for the info
Buena suerte