Urticária colinérgica arruinou minha vida

Saúde da pele, unhas e cabelos
1

Hello.

I am a 28 year old male living in the UK with my parents. I weigh 70kg and am 186cm tall. I have been suffering with Cholinergic Urticaria for 9 months. I am in desperate need of help. 

Previous to developing this condition, I had no health issues whatsoever. 

I have been a competitive middle distance runner for the past 7 years, training every day. I have been heavily active all my life.

This condition materialised in the space of approximately 2 weeks. In that time I became entirely incapacitated in my ability to run.

As a result I visited my GP. A blood test revealed a slightly underactive Thyroid. This became the focus for my Doctor and my skin condition was ignored. Avoiding the immediate prescription of hormone replacement therapy, a repeat blood test was scheduled 2 months later to assess any change in the function of my Thyroid. Sure enough, and without any intervention, my TSH had come down significantly. Although not yet back in the 'normal range', I am schedule to have yet another blood test next month.

My doctor failed to acknowledge any relationship between an underactive Thyroid and Urticaria, and whenever the question was asked he became evasive.

My Urticaria worsened, it's affects no longer confined to when I ran but also when I walk, take a warm shower, lift something, feel stressed, anxious, if I'm in a warm building, when I sleep, when I'm in a car, if I trip. Almost everything I do is now affected, rendering whatever I am trying to do physically impossible. My outbreaks are not just itchy, they are excruciatingly painful. I often feel light headed and nauseous during an outbreak and have nearly passed out on occasion. I have to withdraw myself from whatever situation I may be in, in order to cool my body.

I worked for 6 years as an Account Executive, but last year decided to try something new. I have since lost my job as a Postman, having fallen short of the attendance standards required during probation. I started in January, and was fit work due to cooler weather conditions. In May, whilst on delivery, I was unable to continue. I was unable to work and after 15 days of sick I was dismissed.

Because of the warm summer weather I am extremely unlikely to find alternative work. The thought of sitting in an interview wearing a suit in this temperature causes me to itch. Driving my car is often not possible, nor safe, and I cannot wear anything more than running shorts and a loose fitting t-shirt. My aforementioned symptoms of Urticaria are simply not conducive with job searching/working. Despite having been in full time work since graduating, I cannot apply for Disability Benefit because I have too much money accrued in savings, most of which I had intended to use as a deposit on a house. I cannot apply for Job Seekers Allowance because I am unfit for work.

I was prescribed some Cetrizine, it did nothing. I was prescribed Cetrizine in conjunction with Monteluklast, it did nothing. I was reffered to the Dermatology unit at my local hospital. I provided a physical demonstration of my Urticaria and was prescribed Fexofenadine, it did nothing. I have since been placed on Fexofenadine 180mg, twice a day, and Propranalol 40mg, twice a day. Despite saying he has never seen such a severe case of Urticaria, the specialist doesn't want to see me again saying he has very little more to offer in the form of treatment options. 4 weeks on and despite feeling ill most of the time, these tablets are doing nothing.

I have scheduled an appointment in September with a separate Dermatologist in order to get a third opinion.

I am depressed. My life has stopped. I am now, as I am everyday, sat on my bed. Confined to living a solemn and sedentary existence. I feel lazy. I feel worthless. I cannot socialize for fear of suffering an outbreak in public. My fear is only further compounded by the thought of suffering an outbreak and being unable to affect it. The pain is shocking. I cannot imagine the toll this has already had on my health both mentally and physically; the physical pain of an outbreak seems an entirely unnatural and extreme stressor for my body to have to deal with on a daily basis. As is my transition from running 75+ miles per week, to doing nothing at all, alongside my rapidly deteriorating mindset. 

It's formally documented that this debilitating condition has a greater impact on ones quality of life than that of skin cancer, yet because it's not life threatening in itself it seems no one wants to know. Why is so little known about a disease with such devastating consequences?

I need help. I life like this is a life I do not want to lead and will not continue to lead if I do not witness a significant change in my circumstances. I've had enough and am now very suicidal.

 

2

I have one basic question for you. Were you taking any antihistamines before your first break out? 

3

The reason I ask this is because of my experience with urticaria.  It's a lengthy story, but in the end I had what was called Urticarial Vasculitis. Urticarial Vasculitis can  be an autoimmune disorder, but can also be caused by medications. Mine was caused by a medication  which just so happened to be antihistamines. The allergist I was seeing just kept prescribing different types of antihistamines which never helped and only made it worse. Only when it was at its worst was I able to find relief by being prescribed Prednisone. I'd take this for a week or two and then once weaned off of it the urticaria would come right back. I think this happened because while taking the prednisone I was instructed to continue the antihistamines. 

There are so many more little details to my story,  but I think you understand.  I learned so much in the year that I suffered from with urticaria that I hope maybe I can help you. 

Buffy

4

Hi Buffy,

Thanks so much for taking the time to read about my plight.  

Have you rectified your situation now? With Prednisone? 

Thinking back yes, I was taking some off-the-shelf Benadryl for hayfever...

Scott

5

Yes, I am all better.  Are you still taking antihistamines or similar?

 

6

Fantastic, I'm very pleased for you.

Yes I'm taking Fexofenadine 180mg. 

7

Hmmm, do you get large red welts on your limbs or torso? They would be anywhere from 3" to 6" in diameter. They'd be red, hot, itchy and sore.

8

Let's communicate by email.

EmisModerator comment: I have removed the email address as we do not publish these. If you wish to exchange these details please use the Private Message service, see link below and also one about why you may not be able to upload images.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

http://patient.uservoice.com/knowledgebase/articles/398390-why-can-t-i-use-formatting-or-add-an-image-to-my-p

9

I was hoping to share my urticaria pics but can't seem to get them posted. I was wondering if any looked similar to what you're experiencing.  If I can email them to you that would help. 

10

I get hives - small red spots that appear in a matter of seconds when I'm hot, and disappear in minutes if I manage to effectively cool myself down. They appear on my back, chest, arms and wrists predominantly, but I also get accumulations on my ankles and inside thigh when at its most severe. The spots are very slightly raised, and about the size of a pin head, sometimes a little larger. Since taking fexofenadine and propranolol I have noticed that my itching can often occur without the presence of any hives, but with a greater intensity of pain. 

11

Your experience  does not sound anything like my mine. At one point I thought my hives were cause by heat, but soon realized that they were not.  I know being hypersensitive to antihistamines is very uncommon,  but this was my outcome. It's very strange how taking them worked for me and against me at the same time. Weaning myself off of them was extremely difficult,  itchy and painful. It took over a month to get them out of my system. 

One thing I would suggest trying is an antacid, something like Zantac.  Has your doctor mentioned this yet?  Our bodies also release histamines through our stomachs.  When antihistamines fail to work for some people they have been told to take antacids. You should research it. 

12

Hi. I've had Cholinergic Urticaria for over ten years. Not as severe as yours though. It also comes and goes. I can go for weeks without any rashes, then all of a sudden I get urticaria attacks daily and for the tiniest of reasons (walking, getting nervous etc). 

At the beginning the doctors didn't know what it was at all and they gave me betablockers amongst other thing which did not help. Addition to the attacks my heart rate was also really high (over 100 just sitting down) and I had test etc but my heart was fine. Once they made the connection with urticaria (after I did some googling), they started to experiment with different antihistamines. For me, only over the counter benadryl has helped. Although it only takes the itchiness away, not the rash. 

I get two types of rash: small round rash on my arms and sometimes on my thighs, and large red blotches on my torso. They aren't painful as such although make me really uncomfortable, and they are really itchy. I often also feel little bit nauseus during/after severe attack.

The fact that my urticaria is not always bad makes me think that things like diet and/or stress are big triggers. Maybe worth trying a diet which is lower on histamines? Documentary called Fat Sick and Nearly Dead is worth watching too. 

Not much of a help I know, but urticaria doesn't have to win! My Urticaria was bad in the beginning but life has got better since then. 

 

13

Hello CU12

I'm a fairly new sufferer of hives and my experience has not been nearly as traumatic as yours has been. In fact, I wasn't even aware I had hives, and for months, thought I had mites.

I am not big on doctors so didn't get my hives diagnosed. I put up with it for a long time and found strategies to cope. I didn't use any drugs. I used solutions of lavender and tea tree oil in carrier oils to rub over the affected areas. If nothing else, the lavender oil helped me to relax and sleep well. The oils helped soothe and heal my skin quickly. I prayed and asked God to show me what to do about what I thought were 'mites' and I was led to pictures on the internet which showed me I had hives, not mites.

I'm certain that stress brought it on in the first place. I have the pressure sort of hives. If I wear fitting or stiff clothes which aren't stretchy, or sit down for too long, it flares up in the evening, when my adrenaline slows down. If I place pressure on any area, the hives will show themselves later that day in that area. I'm thankful to say that by ignoring them and relaxing about it (no longer imagining they were mites crawling on my skin), I stress out less and they go away very quickly. Usually in an hour or the next morning. Just rubbing some type of paw paw ointment helps me stop the itch or a warm shower (works for me) and then the oil treatment mentioned earlier helps me a lot.

My skin has always been the means through which my body cries out to me for help, so I see it as a blessing. I am taking steps to ensure I don't overextend myself. My best days are those I spend in loose fitting, stretchy and comfy clothes and move around a fair bit. I'm also trying to eat properly...green live pesticide-free food.

I think I would fit into the chronic category now, but taking extra care to observe what I've done that day and reflecting on what may trigger it helps me cope. Keeping a diary of everything I do and how bad the hives were has been helpful in identifying possible triggers.

My friend has had thyroid issues and regrets now having allowed her thyroid to be removed. She is convinced now that lifestyle and diet can turn things around. She recently purchased a Ninja blender kit and started juicing three times a day and is feeling so much better. I mentioned this because you think your thyroid may have been compromised. Nurse it back to health with good organic green juices.

Our society is so busy and stressful and so many people suffer as a result. Life is precious, so I hope you will hang in there. Sometimes challenges are a blessing in disguise. We need something to stop us in our tracks to realise what is really important. God cares for you. Cry out to Him for help. Deuteronomy 4:29 says, "But if from there you seek the LORD your God, you will find him if you seek him with all your heart and with all your soul."

 

14

Really sorry to hear about your situation. I've had chronic hives that came on suddenly in cold wind the February before last. It was immediately after recovering from a serious 2-3 week flu. I felt better one day, went outside in the sunshine and BAM, hives everywhere. That's how it started at least. Then I started getting horrific itching everywhere most nights for months that destroyed my sleep, often without the hives. It was the worst time of my life and overlapped with having a newborn baby 4 months after this all started. I was an OK middle-distance runner, but it stopped that dead, as running brought on the worst of the rash (though not the itching so much). Eventually about 4 or 5 months in, I found huge relief from Doxepin, although the side-affects of crushing tiredness and weight gain were bad. Though it's originally a trycyclic anti-depressant Doxepin is a sledge-hammer of an allergy drug, and also attenuates pain and particulary that kind of hives itch / pain as well as putting you straight to sleep. You never know, it could help you. I spent 2-3 nights in a row clawing at my skin in agony before Doxepin. In time I could get by on half a Doxepin a night.

After about 6-months on Doxepin I started to notice that it would push the reset button on the hives taking Doxepin just once a week and the itching wouldn't come back for a week or so. Some people have good luck with Montelukast, a neighbour has a similar problem and on Montelukast he is fine, but once off it for a day it comes straight back. For others Prednisone can help, though it can also make things worse for others.

A process of trial and error will get you to some things that help so don't give up trying things. There a whole heap of things you could try, things like Ketotifen, Desloratadine, Propranolol, Xolair.

Over time the hives (also caused by running outside, cold wind, pressure, stress) went away, but the itch remains, though occurring about once a week now and lasting a couple of days. I've been experimenting with different elimination diets and only eating non-processed foods. I had no luck with this UNTIL I tried a diet that removes high-histamine foods AND cut out alcohol. Alcohol had been helping me sleep in the short-term when itching was bad, but I'm thinking now it could have been making things worse overall.

Most doctors and immunologists aren't too helpful on this one and generally people don't understand how torturous this condition is. I was referred to an immunologist but he basically gave up after Montelukast and Prednisone didn't work, but Doxepin did. (I suggested Doxepin btw). My G.P. has been helpful in prescribing me things to try, perhaps you could find a more open minded G.P.? Also, relating to the depression, some anti-depressants can also help with pain and allergy. TCAs like Doxenpin but also SSRIs can have different actions that help some people.

Regarding the depression and stress element. I wouldn't really call it depression if your old life has been up-ended by a disease little understood by doctors and people and with little relief to be had. Try not to be hard on yourself. Perhaps you can re-assess your expectations in the short-term while you deal with this. For example, you used to put a lot of discpline into running, which you can no longer do for now. What if you put this effort into something else now. What has helped me with this is meditation, so you could look into mindfulness, Zen, Yoga or Tai Chai. It's very easy to lose perspective with this disease and get stressed about it. Stress makes it worse and this vicious circle can be (just) part of the problem. Perhaps you could start graduate study in research in something you are passionate about? That wouldn't require you to work in a hot office. You could research at home where you can control your environment carefully. For most people, apparently hives do go away, often in less than a year or two. I know that seems like a long time, but as someone who has been through two years of it, it's not so bad once you find sympomatic relief through finding the right medication or approach. I still have problems but it's 2-3 times a month now. I don't feel quite like my old self but at least I am functioning at 70% now.

You probably need to see an immunologist / allergy specialist rather than a dermatologist. This is your immune system going awry, not the surface of your skin. I'm also thinking of trying Dr. Adrian Morris at Surrey Allergy Clinic. Because I wonder if I have an auto-immune disorder, since he says this can often be the cause of Idiopathic Chronic Urticaria. What he has written about Hives on his web-site tallies a lot with my experience which makes me think he knows more about the subject than most doctors.

Sorry for the long post, these things are an ordeal, it can seem like a curse or a sick joke. But don't give up, look at your diet, environment, mental outlook, meditation, gentle exercise and medicine very carefully and you will find things that help you find relief and things that are causing problems. But I know it's hard, I still get fed up and want someone to just put me out of my misery with a hammer to the head when this re-occurs smile It's just that meditation and knowing the episodes are becoming less frequent stop me staying depressed for long.

One last thing, do you / have you had allergies to animals, pollen, hay-fever, asthma or things like that? I have all of those too. The reason I ask is that I wonder if in your case it might not be only heat that causes the problems, it might also be environmental causes. I noticed that you said that your job problems began in May. I know it gets hotter in May but it's also getting into high pollen season. I've started to think that hives is very much a cumalitve thing, not just one cause, but many things acting at once. For example, a number of bad factors can cause the worse attacks such as alcohol the night before, stress, high pollen counts, living in a house with dogs and / or mold / damp / dust mites, high histamine processed food plus exercise / heat / cold wind = massive hives and itching attack.  

15

this happened to me once,it's not an incurable disease,but the problem is it may recur,my advice is stop or reduce as much as you can of all activities that make you feel itchy,and try to cool yourself anytime,and wait for the time,it tends to get better in summer when the weather is not so dry,of course,summer heat is a killer,but avoid all triggers and you will get better soon,hope this helps you

16

I recently read that Cetirizine at a high dose, 40-60 mg/day, successfully treats hives, so 10 days ago I began taking at 30 mg/morning and night, and it just started working today! I exercised today and had only a very slight tingle in the hands. I've had CU off and on for 30 years and found nothing else that works, besides Doxepin, which is very sedating. Cetirizine can be sedating too, but tolerance to this does occur after a week or so. After taking Doxepin for years, the mild sedation of Cetirizine even at 60 mg/day is nothing, and now I notice no sedation at all. I've read that CU may be caused by blockage of the sweat glands, which seems to be the case for me. During the winter, It takes me at least 20 minutes of exercise in a hot room to even begin sweating. A lot of people with CU complain that they can't sweat (hypohydrosis) in the winter, and that CU seems to be a seasonal disease that only occurs when it's cold outside. Search for "cholinergic urticaria" and hypohydrosis and you will find several studies on this. Evidently, CU is an autoimmune condition in which lymphocytes infiltrate sweat glands, causing keratin deposits which block the sweat gland from sweating. Also several studies have found too few receptors for acetylcholine in the skin, so that acetylcholine "spills over" and causes mast cells to release histamine. Anyway, Cetirizine at 40-60 mg a day would definitely be worth a shot. I did try it at only 20 mg/day (found to help in one study) and it didn't work, so higher doses seem to be needed. Do you have trouble with not being able to sweat during the winter?

17

My daughter is being treated with Xolair for this. One treatment down and she played tag rugby for 30 mins with no rash...first time in months. She is a super swimmer...trained 6 times a week..only 12 but was on track to go places so has had to stop up due to allergy to exercise primarily urticaria but had signs of anaphylaxis also. Dr giving her Xoliar said it's revolutionised the treatment of urticatia. Also I think it all started wth a strep throat...anyone else had this? Feel so sorry for you all...it's so miserable and Drs have told me it is genetic also.

18

About two months in now to a diet avoiding high histamine foods, I'm finding that's reducing frequency and especially severity of flare ups. Keeping alcohol to below recommend daily max and not consecutive days seems to be most important. Also, fexofenadine daily with an extra one as soon as I notice it tickle seems to help too. Finally, when it does happen, about 2-3 times a month, a half or even a quarter a 25mg doxepin helps me sleep fine and seems to settle the bad symptoms down straight away. I talked to my GP about Xolair. He said that he was only aware of it being used in severe Asthma. He said he could refer me to immunology again but they weren't so helpful last time, basically giving up and calling it idiopathic CU and telling me it would probably go away on a year or two. It was me who read about doxepin and demanded it, which was the first real life saver, literally. I'd like to try Xolair but don't fancy the slog of referrals again, since things are just about manageable. Oh, I should also mention I've been avoiding sulphitespecially and benzoates. That could be helping.

19

If you google 'Xolair patient information' it shows that it's used for treatment of chronic asthma and chronic urticatia so your GP could see this very clearly too. I think sufferers get referred to dermatologists when they should be going respiratory consultant/allergy specialist route. In my daughter's case she has a definite diagnosis of exercise induced urticatia/ anaphylaxis...v rare but in a way I feel very lucky that we have a diagnosis and started treatment all within 8 weeks! Good luck & hope things cntinue to improve.

20

Hi buffy,

please can you send me some more details about the treatment that you followed and its effect?