I have been suffering from cholinergic urticaria for the last 3 months. I usually get severe prickly sensation in my back and legs after any physical exertion (walk, cycle) or temperature change (cool to warm). I work in NY city and have to switch 2 trains and a 15 min walk every day to and from work, so avoiding any physical activity is not an option.
I also have Polycythemia, but my dermatologist is convinced that it is cholinergic urticaria and not related. He started me on Zyrtec (Cetrizine) and Allegra and slowly increased the dosage over the last 2 months. I am currently taking 4 Zyrtecs at night and 1 Allegra + 4 Claritins (loratadine) in the morning so a total of 9 pills.
I have only seen marginal improvement. In fact, I feel like some times the intensity is worse than what it was when I started taking the antihistamines. Now he wants me to start the Levocetrizine (Xyzal). The doctor claims he specializes in cholinergic urticaria and I should follow the regimen.
I am not convinced it is going to work. I am fed up with this experimentation. I am also worried about taking too many antihistamines.
Thanks,
-Gary M
Hivesguy says
Hello, Gary. It does seem like you are taking more antihistamines than the average CU person takes. All medications have side effects, especially if taken in large doses and over a long period. Having said that, you might find that some antihistamines (or combinations thereof) provide better relief than others. In addition, some people find that they adapt to antihistamines over time, so they will switch brands from time to time to prevent drug tolerance.
If you are frustrated with your current doctor, you might want to get a second opinion. I know you are frustrated, but don’t lose hope. Keep working with doctors to see if you can find a good combination that works, while also working to experiment with diet and lifestyle changes.
Debby Clements says
I, too, have CU. This is the problem with using mainstream doctors. All they do is give you medications to relieve your symptoms and they think they have cured you. There are hundreds maybe thousands of posts on this website. Young, old, men, women, from all over the country and even in other countries who have developed this. It almost has to be a food additive that we are all allergic to. or an allergy to a GMO food. Or, we all have an overrun of yeast. That is what the dermatologists have told me, but nothing I do seems to help the yeast or cure the CU. People who say they have gone on a Paleo diet have cleared up their CU, which just gives more evidence that it is a food or food additive I suddenly developed CU at age 64. Born and raised in Georgia. It’s not like I’ve moved to a new area. or am eating new foods. I have a very picky, finicky palate, so the foods I eat are limited and fairly bland. but, I did start eating more Mexican food over the past few years and I do now eat a few red peppers. I was eating a chicken rice bowl with a few red peppers from Willie’s when I had my first outbreak. I have no known allergies, except to penicillin, which makes me break out in a bumpy rash that lasts for a few days. Nothing like what happens with the red blotchy, itchy skin I get when Cu hits. And, as soon as I put cold water on my skin and cool down, the redness goes away and the itching stops. I do not sweat from my neck down and haven’t sweated since my first CU outbreak. Not sure if that is the cause or a symptom. So, I keep reading this site, hoping that some one’s doctor figures it out. Best of luck to you.
Linda Starr says
Before I started the monthly XOLAIR injections, my Allergy/Dermatology PA put me on Fexofenadine {ALLEGRA} (one 180MG tablet in the AM) and two others at night: one or two Hydroxyzine tablets and also one Levocetirizine 5 MG tablet {ZYZAL}). One pharmacist seemed to believe that, if I had to choose between Hydroxyzine and Zyzal, he would recommend the Zyzal, and he said that the Fexofenadine along with the Zyzal was “overkill”.
I don’t think all this helped much and I hate taking too many medications!!
But, if you are going to be seeing a doctor, it’s certainly not going to work between you two if you aren’t what they call “compliant”. I would also advise you to get another opinion, perhaps change doctors and/or find a really good Naturopath or TCM practitioner (Traditional Chinese Medicine)!!
Anonymous says
For me no other antihistamines worked.. the only worked was desloratadine.. but I take it every morning since 2 years now..
Anonymous says
Prednisone works best
Linda Starr says
Did you ever see Jerry Lewis? He was bloated up like a huge balloon from Prednisone. Yes, it does work really well…but it’s awful to take long term (my casual opinion, not from heavy research).
Anonymous says
Prednisone do work but are very dangerous over a long period of time because they can cause diabetes.
DJ says
Doctors didn’t help me, change your diet for a full 30 days and you will not have any more symptoms. These medicines just hide the real problem