Help Please

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I am in a panic at this point; my 14 year old daughter has been dealing with chronic Urticaria for a year.  She is currently taking 125 MG of Hydroxyzine and 5 MG of Levocetirizine daily.  On top of that she is receiving Xolair shots once a month which doctor wants to increase to twice a month starting in March.  Her outbreaks have been mostly controlled under the treatment she currently receives but she does still have small outbreaks every other day (treated with Benadryl).  The heavy antihistamine treatment has had a noticeable impact on her socially.  Her mood is crazy up and down.  She has been hospitalized once early on but we have not gotten to that point since then ever again.  She has been blood tested for allergies and she came back negative for everything.  Not sure what to do next.  Any info or experience you can share with me would be greatly appreciated.  I feel like we are drugging my kid to an unsafe level.

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  • Posted

    Hello Mike,  there was quite a lot in the press last year, about Hydroxyzine & cardiac probelms.  I was prescribed it & took it for 18 months but the higest I went, was 25mg at night & that knocked me out for 12 hours, so I can't imagine what 125mg does to your daughter.

    Who is prescribing the drugs, has she seen a Dermatologist?

    Are you in the UK, I have a feeling you are in the US.

     

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  • Posted

    What about a more natural treatment like homeopathy? I had acupuncture for a few months at the start of my flare ups a time the beginning of last year, I feel like they helped. Didn't cure it though. I was adamant I didn't want to drug myself up just to get through it but I'm on 4 different types of antihistamines a day and medical steroids once a month. I just couldn't go through it much longer. I tried nettle tea to begin with too, that seemed to help for a couple of weeks. Worth a shot.

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  • Posted

    I wish I could give you some hope, but I have suffered from chronic idiopathic urticaria for more than 40 years. The condition is controlled with daily doses of 10mg cetirizine and 75 mg ranitidine. Every so often (perhaps monthly) I chose a weekend when I dont have much planned and I stop the meds on a Friday. By Tuesday the next week the rash appears once more, usually under my upper arms.
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  • Posted

    I have had this condition now for about 15 months. The rash and itch is random and can be quite severe, yet often quite mild. In the beginning I was taking one tablet of Telfast, and that was enough to get me through 24 hours with virtually no attack. However, several months ago it became much worse and there came a stage when the Telfast was having no more impact- I was taking up to 4 tablets a day. In addition to this, I was advised by my specialist to add one tablet of Montelukast (Singulair) and 2 tablets of ranitidine. I have no idea why this combination, but apparently this is common. I changed the Telfast recently to Levocetirizine, and I found that one tablet of this was enough to control the rash and itch, sometimes 2. The doctor advised me to take 2 per day in addition to the Montelukast and the Ranitidine tablets- because he felt these additional tablets were needed. Although I still get small outbreaks, it seems to have settled. My understanding is that you need to keep the culprot mast cells to a settled condition where they do not release the histamine, which is what causes the rash and itch. I do find that I get a little tired more now that I am using the Levocetirizine...so perhaps you should try the opposite of what I did- try a non-drowsy antihistamine, such as Telfast. Telfast had no effect on me on terms of sleepiness, not even when I was taking 4 tablets. Try different antihistamines until you find one that has a good balance. I am advised they are harmless.
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  • Posted

    Hi Mike,

    I'm sorry your daughter is going through this. I was also tested for every allergy under the sun and came back negative. So frustrating to not find the cause why your body is reacting this way. I really feel for her. A couple of things:

    Has her thyroid been tested?

    Has she been tested for celiacs disease?

    Are you seeing an allergist? My doctor is an allergist and immunologist. When antihistamines and xolair stopped working for me, I was referred to my current doctor because he will prescribe immune suppressing drugs if needed. (praying it doesn't go there) I am currently on the drug Dapsone. Look it up. It is prescribed for malaria, leprosy and chronic skin rashes/ urticaria. I know it sounds weird. But it seems to help lots of people and you can be on it long term as long as you monitor your liver. So I have to get blood tests every month. Now, being that your daughter is so young, they might not want to give this to her? I'm not a doctor, so I don't know. But you might ask about it.

    What I've found in all my research is that no one cure exists for everyone. You will have to try different drugs and treatments. I've tried every homeopathic route I can think of (went to homeopathic doctor) and just about every combination of doctor prescribed drugs. I haven't tried acupuncture but that is next on the list.

    Rub ice on her breakouts and use aquafore on her skin. I also found that a good plant stem cell lotion helps a little. The steroid creams didn't work as well as the lotion.

    Best of luck and I hope something in this long response will be a help.

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