Cholinergic urticaria

[Sunnydays1982]

Hi there! Does anyone suffer with Cholinergic urticaria? I am currently taking fexofenodine x 3 a day, tranexacid and montelukast to try and combat this!

[DVISION]

Yes, I do. For the past 20 years. I try to control it with sweat therapy. Mine gets worse during the winter because of the dry air/low humidity. During the summer I sweat without symptoms. Horrible itch, hives etc. I’ve tried many antihistamines but none have worked.

David

[Sunnydays1982 in reply to DVISION]

Thanks for your reply. I m trying to sweat as much as I can when I work out but since my post the tranexamic acid has kicked in and symptoms are much less now.

[DVISION in reply to Sunnydays1982]

You’re welcome. That’s good to hear. I’ve learned over the years that daily sweating keeps symptoms at bay. Early on when I first started having symptoms, I went to dermatologists, allergist, etc - tried all types of h1,h2 antihistamines but nothing worked. Back in 2003 I met a fellow sufferer on a yahoo forum who mentioned sweat therapy. Seems to be the only thing that works.

[Sunnydays1982 in reply to DVISION]

What exactly do you do for the sweat therapy?? And do you do it every day? Thank you 😊

[DVISION in reply to Sunnydays1982]

I was using the sauna at my local gym but now I just ride bike at home daily.It’s important to do it at least 4-5 times a week to keep the pores open.

[AllthatGlitters in reply to DVISION]

Hi how does sweating help urticaria?I have had it for over a year now. On fexofenedine, montelukost but doesn’t seem to help much. It’s driving me mad.

[Sunnydays1982 in reply to AllthatGlitters]

Hi there! I find sweat gives me temporary relief as it releases the high histamine levels in your body but then it does come back later in the day!! I ve had mine a year too and am also on tranexamic acid alongside fexofenadine and montelukast. The tranexamic acid is definitely helping now, might be worth trying?

[DVISION in reply to AllthatGlitters]

In a lot of people, sweating brings relief if done daily. If you have the type of Cholinergic urticaria that gets bad during the winter months when it’s cold, dry air etc. - it was discovered that sweating via sauna, cardio or hot showers (without the water hitting you) can bring relief. In my case, I don’t have symptoms during the summer because the high temps & humidity keep my pores open allowing me to sweat normally. CU seems to block the pores causing the itch, hives etc.

[AllthatGlitters in reply to DVISION]

Thank you so much for getting back to me. It makes sense now what you are saying 😊

[DVISION in reply to AllthatGlitters]

You’re welcome. Keep us posted if you try it. Is it confirmed that you have cholinergic urticaria?

[AllthatGlitters in reply to DVISION]

It’s confirmed I have urticaria. It’s worse when I have a hot drink, shower, get hot in general. I seem to be better skin wise when I am kept cool.

[DVISION in reply to AllthatGlitters]

Ok. Yes, you can stop an episode if you cool down but the idea is to keep sweating which is the body’s natural way. I remember earlier on I would blast my ac or put my hands in cold water. Then years ago I met a fellow sufferer on a yahoo urticaria forum who used sweat therapy instead.Also, keep in mind, it can go into remission or go away completely. I was symptom free for 10 years before it came back a couple of years ago.

[AllthatGlitters in reply to DVISION]

I hope that happens to me as I never had problem with my skin until I started to have medical conditions (fibromyalgia, endometriosis and adenomyosis) and I take a whole load of medication too.can I ask what medicine you take if any for your skin?

[DVISION in reply to AllthatGlitters]

Hopefully so! I don’t take any medications because they never helped. Early on I tried many antihistamines and other meds but nothing worked.

[AllthatGlitters in reply to DVISION]

I know what you mean about anti histamines as I take them but they don’t seem to do anything in my opinion. We need a miracle pill. Do you ever suffer with nodules under the skin which are painful to touch?

[Sunnydays1982 in reply to AllthatGlitters]

The only thing that has really calmed mine down is the antihistamines x 3 a day of fexofenadine and the tranexamic acid...that took a while to work but it’s working well now 🙌🏻

[AllthatGlitters in reply to Sunnydays1982]

Hi what dosage of fexofenedine do you take? I currently take 1 a day x

[Sunnydays1982 in reply to AllthatGlitters]

I take 180g 3 times a day. When I increased this it 💯 stopped my itching. If you do increase let us know how you get on x

[AllthatGlitters in reply to Sunnydays1982]

Mine are 120mg once a day x

[AllthatGlitters in reply to Sunnydays1982]

At what times of the day do you take them? 😀

[Sunnydays1982 in reply to AllthatGlitters]

Yes that’s quite a low dose. I take them breakfast, lunch and dinner. Definitely see if you can change them. This condition is completely rubbish, seems to take some calming down that’s for sure! Really hope you get some relief x

[AllthatGlitters in reply to Sunnydays1982]

I wonder if my GP will give me more in the prescription. I will try that going forwards with the medication I have x

[DVISION in reply to AllthatGlitters]

Honestly I think antihistamines make it worse by drying out the skin. At least in my case.I haven’t experienced painful nodules.

[Sunnydays1982 in reply to AllthatGlitters]

Hi there! Just curious to know if the antihistamines are helping? 🙂

[AllthatGlitters in reply to Sunnydays1982]

Hi not yet but maybe it’s too soon? 😀

[Sunnydays1982 in reply to AllthatGlitters]

Oh nooo! That’s so disappointing to hear! I really hope you get some relit soon. Mine is on and off...good days & bad days! I m curious to see what summer will bring with the rise in temperature 😫😫

[AllthatGlitters in reply to Sunnydays1982]

I find my skin is better in the summer but initially it’s like I have solar urticaria. It can be so sore. Do you get the same? X

[Sunnydays1982 in reply to AllthatGlitters]

Weirdly enough I never developed much of a rash because of the antihistamines but I had a really bad time with it last summer but I had no idea what it actually was at the time...just knew it was sweat/heat related. The hives I get are actually on my head (random!) they can get very sore, I can feel them through my hair. Sometimes it’s like they are burning! I m still taking all my medication and it’s def took the edge of things but hasn’t cured it. My dermatologist had mentioned taking immunosuppressants to treat it but I m not sure about that! Seems so extreme!! And really don’t want the side effects of taking heavy medication...could be worse than the condition itself! 😬

[DVISION in reply to Sunnydays1982]

How are you doing with CU?As I mentioned in my earlier post - I am symptom free during summer months because I’m able to sweat. Unfortunately the temps are starting to drop and now my symptoms are starting up again.

[Sunnydays1982 in reply to DVISION]

Hi there! It’s very up & down…at the minute things are good. I think my medication 💯 helps, I tried to reduce it myself and it flared up again. I now take nizitadine and I really think this has helped things, it’s another form of antihistamine. I have noticed if I have a change of atmosphere…for example a brisk walk with wind, sun and rain (uk weather 🙄) that this can set things off. How are you doing?

[DVISION in reply to Sunnydays1982]

Hi! Glad to hear your medication is working. I live in the states and now the temps are starting to drop. I’m starting to get that burning, horrible itch again. I was great during the summer as that is the only time I’m symptom free.

[Sunnydays1982 in reply to DVISION]

So frustrating!! 😖 Are you under a dermatologist or allergist? Could they give you some medication to try or could you try the sweat therapy during winter months?

[DVISION in reply to Sunnydays1982]

I gave up the dermatologist & allergist. When you have to suggest treatment/meds to them, to prescribe, then it’s time to move on. I do sweat therapy. It’s the only thing that works for me.

[Sunnydays1982 in reply to DVISION]

I don’t blame you! Sometimes you just have to sort yourself out don’t you?!! 🤦🏼‍♀️🙄 hopefully that’s going to work for you through the winter months 🤞🏼

[DVISION in reply to Sunnydays1982]

Some days are better than others but I’m still doing cardio daily to keep the sweat going. Hope you’re doing well.