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I may have urticaria

Posted , 7 users are following.

aleise416
aleise416

Hello I am new to this, for the past 2 months I have experienced hive like bumps and burning red itchy/burning spots all over my body. Bright welts (looks like I got burned by a curling iron) will appear on my face arms, feet, stomach, and back. If they are not welts, I have just bright red blotches that burn, tingle, and itch. I have been taking fexofenadine for about a month and at first it worked but now it just barely takes the edge off. I am desperate and miserable, if anyone has any advice as to what this may be or how to treat it please let me know. Thank you!

0 likes, 19 replies

19 Replies

  • lorraine34338
    lorraine34338 aleise416

    Posted

    Hi Aleise, what does your doctor say? Have they suggested seeing a specialist? General practitioners have no real idea what Chronic Idiopathic (or Spontaneous) Urticaria is and how to deal with it, so don't let them kid you! If you are in the UK the GP can refer you on to specialist out of your area and there is one in Sheffield Hallamshire Hospital, a dermatologist called Dr Sabroe, she is a top specialist for CIU. If your doctor refuses find your nearest Patient Advisory Liaison Service and they will help, you can find them on Google. I was on cycloporine for six months which cleared it but you may have some health issues that has triggered this. Could be a bout of flu, sickness, stress, small intestinal issues and change in estrogen levels, all could be a factor. There is also a treatment called Xolair which is affective for some people. If you are in other countries there is probably a specialist you would have to search for. Good luck.

    • aleise416
      aleise416 lorraine34338

      Posted

      Hi Lorraine thank you for replying.... I am in the United States, and I do not have any kind of medical insurance, I am 29 years old with no other real health issues, I cannot get to the bottom of it on my own, I went to the doctor once and paid out of pocket and all they did was give me a cortizone shot which did not help.... I am just desperate to find out what may be causing it, this has taken over my life.
    • lorraine34338
      lorraine34338 aleise416

      Posted

      Hi, it's going to be difficult for you if you cannot access specialists. You need to look up low histamine diet, plus you need to be taking multi vitamins, particularly, vitamin D and B12 methylcobalamin which other people on this blog swear by and which I am now taking. Make sure you look after your health and check your estrogen levels. I have found that bathing the hives with very salty water reduces the itching considerably. There are other antihistamines such as cetirizine and loretidine that may help, but without medical assistance it might be difficult to affect a remission. You map need steroids such as prednisone which I expect would cost you. Try to reduce any stress you have as this a big trigger. Good luck

  • rosalind04586
    rosalind04586 aleise416

    Posted

    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).

    • aleise416
      aleise416 rosalind04586

      Posted

      Yea I have used the hydrocortisone cream and I also use dipemenhydrine gel, you can get it at the drug store it works pretty well but leaves a sticky film on your skin
    • vera47921
      vera47921 aleise416

      Posted

      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!

    • aleise416
      aleise416 vera47921

      Posted

      Yea i did notice alcohol makes it much worse I had one drink last weekend and was miserable!! I need to get on the ball and get some medical coverage, I am only 29 years old this should be the prime of my life and instead I can't go anywhere because my skin flares up and I can't stop itching. I have not changed any soaps or detergents, no new products to cause a reaction, but out of no where it just appeared one day.

    • vera47921
      vera47921 aleise416

      Posted

      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

  • siobhan37552
    siobhan37552 aleise416

    Posted

    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

    • vera47921
      vera47921 siobhan37552

      Posted

      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

    • siobhan37552
      siobhan37552 vera47921

      Posted

      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

  • mom483
    mom483 aleise416

    Posted

    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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  • lakeisha59709
    lakeisha59709 aleise416

    Posted

    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?

    • mom483
      mom483 lakeisha59709

      Posted

      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. 

       

    • lorraine34338
      lorraine34338 mom483

      Posted

      Hi, there are people who understand CIU but you have to find them. A lot of doctors think prednisone is the answer but cyclosporine has worked for a few people on this blog. You have to understand what your trigger is. If you have ill health or infections, UTIs for instance, also gut issues such as how your body is processing food, estrogen changes, stress, all these are triggers and a person can have more than one. I m in remission but still get an occasional hive if I am stressed usually on a blood vessel and I take cetirizine, fexofenedine or loretidine and it usually goes in a few days. You must try to find a doctor that understands the condition. Good luck.

       

    • vera47921
      vera47921 lorraine34338

      Posted

      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

    • lorraine34338
      lorraine34338 vera47921

      Posted

      I was on cyclosporine for sixth months with a slow tail off and suffered no ill effects. Wendy on this blog has been on it longer and is also ok. Both of us have gone into remission. The problem with steroids is you can get rebound when the condition comes back worse when you come off. Wendy is on a slow taper of prednisone which seems to work for her.
    • vera47921
      vera47921 lorraine34338

      Posted

      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

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