cholinergic urticaria/hives

[jifnif]

I have exercise induced urticaria.  I want to know if anyone else has this and if so what causes it and what can you do to control it without a prescription.  I am desperate.  I am a runner that does not want a prescription.  I suffer from asthma and the hives are worse when my asthma is worse.  I am not taking anything for asthma except for an inhaler at the moment.  I am tired of depending on drugs.  I know that may sound ignorant but I want to help myself to help itself if you know what I mean.

[anniewhits]

Hi Everyone,
My first post but have been watching and learning. I will put my "CU timeline in point form because it became so complex that I confuse myself…… I am 53yrs old and female – Australia.

1. Mum said I had hives as a child but it was a common thing back then.
2. I had an outbreak of pressure urticaria after a Chinese meal in the mid 80's and put it down to MSG or something – prednisone for a week and it went.
3. My gorgeous, beautiful, kind son died in 2006 after a 5 yr battle to live –
high stress, for a long time – he got a blood clot I his lungs and died waiting on the transplant list – very very stressful also dry runs to hospital ,
heart/lungs not suitable etc – and surgeries to keep him alive – also high debt nearly a million spent on medications not under PBS so massive debt here still. –therefore - depression and grief ( 2 different things ) are issues. I was 48.
4. Urticaria breakout in early 2007 – lots of stress after Tim died, moved
state, relationship worries – you can only imagine. I was treated with
Prednisone and Zyrtec and Zantac ( ranitidine) 6 mths settled down.
5. Started bowel issues – diarrhoea, cramps etc 2009 had a colonoscopy and Gastroenterologist had a feeling about it and did 6 biopsies along my bowel. Came back positive for  lymphocytic Colitis – cause is suspected auto immune still not much known about it as it is often missed. Says is rare but believes it is only rare because Dr's do not biopsy for it.
6. January this year massive break out and still have it. STILL HAVE IT! Been playing around with meds and everything seems to give me problems.
7. Tried Cyclosporin and had kidney failure – so that is a no go.
8. Prednisone I only take as a short term thing for a massive flare – due to
side effects.
9. Liver is not user friendly and I retain fluid and have familial high
cholesterol. Had to stop cholesterol meds due to liver function. Good grief!
10. after join a couple sites i have now become aware that a lot of women that had endometriosis have urticaria of different forms but auto immune - i had endo.
11 - i am a blusher and get flushed, if i cry, get anxious , ever so slightly - even if i laugh when i am out  got and go bright red - then you can be sure some hives will come up. i hate this - i embarrassed and ir gets worse (duh)


Current meds - backed of by science you need both a H1 and a H2 receptor.

Morning Entocorte 3mg for bowel – steroid that does not get absorbed so much into the blood but goes through to the bowel.
1 x Zytrec (Cetirizine) (was on 2) - Hi histamine receptor
1 x Zantac ( ant acid ./ reflux ) Hi histamine receptor
1 x Xanax ( anxiety, agitation, restless legs)

Midday  was on 2 Zyrtec now cut out due to zombiness

Eve 2 x doxepin ( 10 mg) - wish i could get down to one, it makes me fat i think as does zyrtec.
1 x Zyrtec  ( was on 2)
1 zantac
2 x Xanax ( anxiety, sleep, restless legs) also trying to cut back was put on this when we were waiting for transplant. :(

This week – Dr ( Specialist Dermatologist ) said drop Zyrtec pick up Telfast
(Fexofenadine) and started me on Singulair (10mg) once a day- that was Monday –
Tuesday woke up hysterically itchy all over, some hives, some broken & weeping serum. So hit myself with some prednisone to calm things down went back to my usual regime and will just add Sungulair after the weekend and see. As 2 things were changed I don't know what flared me up.

I am itchy most of the time all over, where ever I touch or light rub brings up a wheel, hive, rash – Where ever my clothes touch I have red welts and feel itchy and hot. E.G undies, bra, waistline if wearing a skirt, shoes, necklace. I also get really scarlet red and blotchy if I laugh or cry around my chest and up my neck or anything other than quietly sitting and not at emotional- That is normal to get a slight rash around their neck / chest, for some woman but I get it extremely bad.

Diagnosed after allergy tests and heaps of stuff with Auto Immune Chronic
Dermographic Urticaria.

Honestly I am not coping with this at all. Due to the loss of my son I need to walk, get out to help with depression. not be bombed out on anti histamines.

Prednisone makes me much more emotional- I just can't take much more. – and this is the short version – sorry. I feel like I cannot win  -
for the people that get urticaria where skin rubs skin during exercise you can get a stop chaffing power from the pharmacy that helps - as it lowers the friction - i have also used cornflour in Australia rub before you walk/run and it may be called corn starch elsewhere - it s the finest powder you can i used it if my babies got heat rash and nappy ? diaper rash back in the 70's and 80's.

Love
Annie

[krowiak1]

I also have cu! I not only get it from  exercise, but from as little as vacuuming an area rug, or clorox in the laundry. If I am around chemicals or my thermostat is on the rise from heat, or the slightest bit of running, my eyes will start to sell and then I am in trouble. Have not heard many of you write about this stage of cu. Anyone else have the swollen in the face or eyes? I have learned to control m symptoms, so that I do not get to that point, unless I am where there are chemicals and I ingest them. My Doctor has been doing alot of research on this and he thinks he may have found a shot that it used for asthma, It is called Xolair. This is used to bring the IGE levels down, which is what is elevated in CU. Unfortunately, I do not have asthma so the insurance company will not allow it, stating that it would be experimental. My Doctor believes this will help they symptoms of cu.So for those of you that have CU, maybe you should have blood test done to see if your IGE levels are elevated. Maybe we can start a rally on the cure for CU.

[cyrunic]

I had my first attack at age 6 and am now 48 yrs old, I take Benadryl Acrivastine 8mg which seems to work well, but also take Ranitidine for an unrelated condition. Until reading this site, I was unaware that the 2 worked in conjunction.
I have suffered from depression and anxiety which seems to exacerbate the CU, tried meditation, relaxation and just about everything else. I also have Psoriasis, eczema and asthma, which are all related to CU.
I suppose I'm just so glad to come across a site with other sufferers, thank you all for your input, as perhaps we can come up with a way to manage this debilitating condition, keep posting!

[Conquerer4]

Thank you, thank you, thank you to all of you! I thought it was just me. I started experiencing Cholinergic urticaria about 4 yrs ago. I only get it bad when I run. I wasn't much of a runner in the past, but the last couple of years I decided to try to run more. Oddly enough I don't experience it as much on treadmill, as opposed to running on the street.

Based on a lot of the comments and my own experience, there seems to be a correlation between asthma/shortness of breath. I too was told by my doctor a few years ago that I had exercise induced asthma.

I'm still experimenting, but Zyrtec seems to help. Additionally, I've been trying breathing exercises and I feel like the better my breathing gets while running the less I itch. I also think the army guy may be on to something. I refuse to quit! I will fight through this and I will win!

Thank you all again! I really thought I was going crazy all by myself. I wish you all the best and I hope it gets better for you all.

[Djpipsta]

I also have suffered from cu for 4 years now. This cobdition dramatically decrease my life quality. Somehow, once body core temperature certain threshold, mast cells and basophils begin to exocytose (secrete) histamine and other inflammatory factors into tissues underneath the skin. These cytokines (histamine etc) interact with
target receptor located on my cell types. Endothelial cells (cells made up capillarie wall) express H 1 receptors on their cell membranes. Histamine released by leukocytes will bind to these H 1 receptors, relaying specific instruction for these cell to response. One of the cells' responses is shrink in size. This leave gaps between endothelial cells made up blood vessels (cause capillaries to become porous) ,allowing blood to exudate into the surround tissues, which apear as a distinct tiny rounded lesions (hives) histamine and other inflammatory factors (prostagladins etc) causes others irritation sensations such as itchiness. Current knowledge suggest that cholinergic neural pathways may be involve with this condition. Sympathetic neurons release acetalcholines ( neural transmitters) which react with cholinergic receptors on target cells may somehow cause mast cells and other cells (mainly leukocyte) release inflammatory factors to the tissues, result in wide spread hives cover large area of the body.
There is NO cure for cu. This is simply because we currently do not understand detail mechanism of cu development. All we know is that mast cells dump lots of histamine into surrounding tissues correspond to raising in body core temperature and mental exertion. The prognosis of the disease is fairly comforting because cu tends to disappear by themselves. However, high percentage of cu sufferers tend to retain the condition for several years.
The key of controlling cu is to seek professional medical help (specialis in immulonoly or urticaria allergist) Exercise every morning may reduce severity of cu since the condition tend to exhibit refractory period after breakouts. This period may provide opportunity to live hive free through out the day. So be happy and think positive. One day we will be cured from this condition. In the mean time; hang tight and try to search for ways to minimize the attack. B vitamins might help. If antihistamine work for you then take it. Aside from rare cases of severe allergic reaction, antihistamines are pretty safe to take for long duration for individual with healthy liver and kidney. Combination of antihistamine (xyzal) and singuliar can be effective for sone cu patients. Try to stay from steroids. They can worsen cu condition in some patients. I hope this help. Gotta go. Cheer up and be in good spirit. This is surely not the end of the world :)

[Djpipsta]

I also have suffered from cu for 4 years now. This cobdition dramatically decrease my life quality. Somehow, once body core temperature certain threshold, mast cells and basophils begin to exocytose (secrete) histamine and other inflammatory factors into tissues underneath the skin. These cytokines (histamine etc) interact with
target receptor located on my cell types. Endothelial cells (cells made up capillarie wall) express H 1 receptors on their cell membranes. Histamine released by leukocytes will bind to these H 1 receptors, relaying specific instruction for these cell to response. One of the cells' responses is shrink in size. This leave gaps between endothelial cells made up blood vessels (cause capillaries to become porous) ,allowing blood to exudate into the surround tissues, which apear as a distinct tiny rounded lesions (hives) histamine and other inflammatory factors (prostagladins etc) causes others irritation sensations such as itchiness. Current knowledge suggest that cholinergic neural pathways may be involve with this condition. Sympathetic neurons release acetalcholines ( neural transmitters) which react with cholinergic receptors on target cells may somehow cause mast cells and other cells (mainly leukocyte) release inflammatory factors to the tissues, result in wide spread hives cover large area of the body.
There is NO cure for cu. This is simply because we currently do not understand detail mechanism of cu development. All we know is that mast cells dump lots of histamine into surrounding tissues correspond to raising in body core temperature and mental exertion. The prognosis of the disease is fairly comforting because cu tends to disappear by themselves. However, high percentage of cu sufferers tend to retain the condition for several years.
The key of controlling cu is to seek professional medical help (specialis in immulonoly or urticaria allergist) Exercise every morning may reduce severity of cu since the condition tend to exhibit refractory period after breakouts. This period may provide opportunity to live hive free through out the day. So be happy and think positive. One day we will be cured from this condition. In the mean time; hang tight and try to search for ways to minimize the attack. B vitamins might help. If antihistamine work for you then take it. Aside from rare cases of severe allergic reaction, antihistamines are pretty safe to take for long duration for individual with healthy liver and kidney. Combination of antihistamine (xyzal) and singuliar can be effective for sone cu patients. Try to stay from steroids. They can worsen cu condition in some patients. I hope this help. Gotta go. Cheer up and be in good spirit. This is surely not the end of the world :)