Hi All,
I am 35 and have been battling severe chronic urticaria for 9 years, with each year progressively getting worse. I battle massive outbreaks almost daily, some days not so bad, with no rhyme or reason as to why. I have changed my diet and tried several different eating styles to try to curb this auto immune disorder, such as strict chicken, rice and water diet for 30 days, to Paleo style diet for 6 weeks. The Paleo consisted of no sugar, no wheat, no preservatives, nuts, dairy certain meats etc.
I also tried the Omalizumab (Xolair) injection. I received the injection for 8 months. The first 3 months were euphoric, and each passing month thereafter they began to come back. I was advised to double the injection, but the cost was beyond my limits. I have been on prednisone, atarax, tons of anti histamines, and all meds are rarely having effect.
I am mentally and physically exhausted. I have three wonderful children and an amazing fiancé who are so supportive. I am struggling more than ever lately and am not sure how much longer I can do this.
I recently discovered that drinking a fair amount of alcohol dissipates my hives overnight, lasting for around 24 hours . So needless to say, I have been relying on the alcohol for relief. With my family understanding and being such a strong support system, it helps. Although I am now feeling guilt for consuming alcohol regularly, it provides me with much needed relief. I don’t know what is worse, the guilt of drinking or the mental exhaustion of the urticaria. Is this causing un-needed stress or relief ?
I’m confused, broken, and not sure what to do anymore. Thankfully I have maintained my job consuming so many antihistamines and feeling exhausted daily. I do it for my family, without them I would not have lasted this long. Thankful yet terrified, I cannot endure this much longer.
Any advice or a way to cope with this would be appreciated
-Shuandra
Hivesguy says
Shuandra,
I’m so sorry to hear of your exhaustion and troubles with this disorder. I commend you for being so strong during your intense struggle. It sounds like you’ve already experiemented with a lot of medicines and diet, so all I can say is that cholinergic urticaria can sometimes have a mind of its own. I know you probably feel like life is too hard and that you should just give up, but hang in there. This disorder may spontaneously get better or go away at any time, and you have to hold on to the hope that you will find some solution to at least make them manageable. I mention several other treatment options on this site (and in the videos). I’m not sure if you’ve tried all of them, but it can pay to keep trying things you haven’t yet tried. I hope you get better soon!
Michael says
I am 73 years old have / had and have CU for as long as I can remember . Please do yourself a favor and stay off alcohol you will only do more and more of it . I know this for I did the same thing . All of us CU suffers are different you need to find what works for you but not alcohol . What happens when your CU is really bad in the am. and you have to go to work . I know you say you take alcohol at night but when you have CU and its bad you will do anything to stop it .I take PAXIL CR 25 MG once a day it works pretty good I still off and on get attacks but not as bad or often . I pray the CU leaves you do not give up trying to beat it but be careful about doing it .
Meg says
Hi. I understanfd your despair. I can no longer do the things i love like dancing or playing with my dog. Me and my doctor may have found out why mine is so severe–anihidrosis (inability to sweat). Now i am an a path to start activating my sweat glands again. I have not the results as because i am severly dehydrated so my dr is getting me back to a proper hydration and i have strted ginger teas which help activate the sweat glands. I am praying this will be my relief. Maybe it can be yours too!
Robin says
Shuandra,
I’ve noticed the same thing that drinking alcohol relieves the itching. When I have a bad outbreak, I’m going crazy itching all day, and then as I start drinking a glass of wine in the evening, I start to feel a lot better. Don’t feel guilty about drinking alcohol at night, it helps you. Just don’t drink such large quantities that it creates another problem.
I just tried going gluten free about 3 weeks ago and thought it was going well, but then I just got hives again yesterday so I am discouraged. Hang in there!