When Is Cholinergic Urticaria Considered Cured? Does it Go Away Gradually?
Post by: billysielu on June 18, 2009, 10:15:15 AM
OK, I was about to post a “my Cholinergic Urticaria is gone” thread, but I didn’t want to post it too soon incase the Cholinergic Urticaria came back.
As we’ve figured out on our own, Cholinergic Urticaria isn’t a disease, a bug, a virus, an anything. Cholinergic Urticaria is nothing. You can’t scientifically detect it, so how can you say whether you have it or not. Well, you base it off the symptoms. We can quite easily determine whether people have symptoms matching those we refer to as Cholinergic Urticaria, based on their short posts about it – so why is it so hard to determine whether your Cholinergic Urticaria is gone or not?
I’d like this to be a discussion thread, so we can all work from the same reference. When is Cholinergic Urticaria gone?
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Title: Re: When is Cholinergic Urticaria gone?
Post by: HivesGuy on June 18, 2009, 11:08:14 AM
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Hello billysielu,
First, congrats if your Cholinergic Urticaria has stopped attacking you. I know it must feel great.
I totally agree with you about Cholinergic Urticaria not being an actual disease in itself. To me, it is merely a sensation caused by something out of whack in the body (whether it be a vitamin, hormone, etc.). So it is a symptom in my mind too, not an actual disease.
As far as when Cholinergic Urticaria is gone, that is a great question. In my opinion, I would say when the symptoms have not appeared for a significantly long period of time. If I had to say a period of time, being symptom free a month or so would be long enough to consider it “gone.” Especially if one has been in situations where Cholinergic Urticaria would normally flare within that time (i.e. going into hot rooms or outside, being able to sweat naturally, etc.).
Having said that, some people can go into “remission” for a period as long as months or years, only to have Cholinergic Urticaria come back. In my case, for example, I did have a period of about a year or two where I basically had no major Cholinergic Urticaria attacks. So I considered it gone. However, it came back.
So in that way, I guess Cholinergic Urticaria is like anything else we can get that is a symptom (such as a fever). You know it is gone when the symptoms are gone, but it can always come back.
Ideally, it would be nice if the Cholinergic Urticaria goes away and stays that way forever ;D.
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Title: Re: When is Cholinergic Urticaria gone?
Post by: MoshiMoshi on June 18, 2009, 06:19:01 PM
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Quote from: billysielu on June 18, 2009, 10:15:15 AM
OK, I was about to post a “my Cholinergic Urticaria is gone” thread, but I didn’t want to post it too soon incase the Cholinergic Urticaria came back.
As we’ve figured out on our own, Cholinergic Urticaria isn’t a disease, a bug, a virus, an anything. Cholinergic Urticaria is nothing. You can’t scientifically detect it, so how can you say whether you have it or not. Well, you base it off the symptoms. We can quite easily determine whether people have symptoms matching those we refer to as Cholinergic Urticaria, based on their short posts about it – so why is it so hard to determine whether your Cholinergic Urticaria is gone or not?
I’d like this to be a discussion thread, so we can all work from the same reference. When is Cholinergic Urticaria gone?
I think Cholinergic Urticaria can stay as a psychological thing even if you’re conditions may start to improve, because when you get to a certain temperature something in your head screams ‘Here they come!’. So Cholinergic Urticaria is gone when you know you don’t have to worry about your body temperature going above a certain point.
In terms of a time period, I agree with HivesGuy. A month is a decent amount of time to determine whether Cholinergic Urticaria has gone or is just being a bit doormant. But you can never be sure, because I, like most people on here have had their hives go and come over the years.
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Title: Re: When is Cholinergic Urticaria gone?
Post by: billysielu on June 19, 2009, 10:04:37 AM
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OK, lets try and define these then.
Gone: When you’ve had no Cholinergic Urticaria symptoms for 3 years.
Remission: When you’ve had no Cholinergic Urticaria symptoms for 1 month.
Is there anything we can do to improve these definitions?
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Title: Re: When is Cholinergic Urticaria gone?
Post by: StrongerThanHives on June 19, 2009, 11:57:23 AM
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Quote from: billysielu on June 19, 2009, 10:04:37 AM
Gone: When you’ve had no Cholinergic Urticaria symptoms for 3 years.
Remission: When you’ve had no Cholinergic Urticaria symptoms for 1 month.
Sounds pretty accurate to me.
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Title: Re: When is Cholinergic Urticaria gone?
Post by: HivesGuy on June 19, 2009, 01:30:06 PM
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Sounds pretty good to me.
I guess the only tricky thing with Cholinergic Urticaria is that it can always come back at any time. Some people may not have it for 5-10 years, and then get it again. I have actually read several cases online where people say they had it 10 years ago, and have it again.
So to be truly accurate perhaps we should say “remission” any time it goes away for any period of time more than a few days, and we should say “Gone/Cure” if it never comes back (ever). But then it gets hard because we don’t know if it will ever come back.
It is kind of like a fever. You can’t “cure it,” you can only treat it until it goes away, and you have no idea when it may come back. So Cholinergic Urticaria can perhaps never be “cured,” but can get treated or go into remission for periods of time. ???
So I suppose about 1-3 calendar years is a pretty good indicator that it may be in long term remission for a while (or permanently).
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Title: Re: When is Cholinergic Urticaria gone?
Post by: K236841 on August 17, 2010, 02:09:58 PM
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Hi all, I’ve had Cholinergic Urticaria for 2 years now and I’m effin sick of it.
Has anyone ever heard of this condition being caused by antiboitics?
If so can’t it be cured by them so to speak?
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Title: A question for those who have been cured of Cholinergic Urticaria
Post by: shindayume on October 11, 2010, 12:56:24 PM
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Hello,
I have just one quick question regarding those people who have been cured or at least have not seen any symptoms of Cholinergic Urticaria for a while;
Did it just one day stop breaking out all at once or did it gradually get better and better by each day?
I noticed my Cholinergic Urticaria is getting and worse now. My attacks are alot quicker and lasts longer and from the neck down to my feet is covered with ithcy rashes now. It became worse within the last week or so and just gets worse by each day. I wanted to ask if others who have been cured of Cholinergic Urticaria if it all went away one day?
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Title: Re: A question for those who have been cured of Cholinergic Urticaria
Post by: HivesGuy on October 11, 2010, 01:09:10 PM
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Honestly, it could be both. It may get to the point where you rarely have attacks, and then one day you simply can’t remember the last time you had a hives attack. Likewise, you could literally wake up one day and for some reason it just goes away. So yes, it can either vanish just as mysteriously as it appeared, or it could gradually fade away until one day you realize it no longer bugs you.
You may have it for a few weeks or months, and it may go away forever. You may have it a few years, and then it may go away a few years, and come back again. Or, you may have this for the next 30 years straight. It really is highly variable.
With my case, I had it for about 6-8 months at first. Then, it went away for about 2-3 years. Then, it came back for the past 5-6 years straight (although it has gone up and down in those years, and some months or weeks it wasn’t bad at all).
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Title: Re: A question for those who have been cured of Cholinergic Urticaria
Post by: shindayume on October 11, 2010, 06:42:02 PM
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Thank you for your quick reply. I really appreciate the info.
I really hope this thing will be cured for all people sooner than later. That is so strange that it comes and goes throughout the years. I really hope we can be truly cured where it will no longer be inside of us. That will be great if one day you wake up and it never comes back but it is a little scary that it can come back years later and in even worse symptoms.
Since this Cholinergic Urticaria problem is new to me, I still hope I will wake up one day and it will not annoy me any longer. It’s times like these that makes me want to try practically anything to cure this problem. So I go to religion for help more than ever especially when there seem to be no true cure.
Nichiren Buddhism I practice mentions how all people will suffer in their lives but we all have the inner strength to overcome any and all sufferings. The same goes with any bad karma you will deal with, you can change everything for the better. I don’t want to sound preachy or advertise anything here. But these times are hard for many people and I hope there is an answer for all of us if not physically, then on a spiritual level.
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Title: Re: A question for those who have been cured of Cholinergic Urticaria
Post by: Rogerq23 on October 12, 2010, 01:57:40 AM
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Wao, Im pretty sure you enjoyed a lot those 2-3 years without C.U
My doctor says this is allergy, and allergy is an illness of the immune system. So anytime in your life that “switch” can open and you get allergy any kind including C.U. It can also be turned off anytime in your life.
Can you remember what did you do or did not do in those years that the C.U. disappeared. I know its difficult but some relevant information…? like you suddenly stopped eating something in those years, you moved to somewhere else… you bought a new bed (dust mites)?? any idea?
Thanks
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Title: Re: A question for those who have been cured of Cholinergic Urticaria
Post by: hieveryone on October 12, 2010, 03:02:50 AM
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I saw my alergist last week and I’m trying a new treatment. I also do my usual exercies/diets/mentally-positiveness that are complements to ease my life but she told me something of a new way of lowing the Cholinergic Urticaria that has cured some. The strange thing is that it is based on Asthma, wich I had ten years ago (5 before the beggining of Cholinergic Urticaria) so I totally disconected it from this (becouse it went away and I never had any lungs problems). I did a test ago and it showed that I didn’t breath completely well but without any problem. My alergist said it wasn’t related, that I should prove anyways becouse it helps a lot some people. The time to spect the first (if any) improvements is a month, I have been taken it for a week and nothing is noticed (Also the cold has come so this makes the Cholinergic Urticaria worse), the good point is I realice that now I can take a lot (cold) air into my lungs, this gives me some extra energy. I don’t want to make publicity of the mark, also I buy it here in spain becouse the state makes it a lot cheaper, I don’t know if it’s sold in the USA or England.
Anyway, I tell you all of this becouse I’ve read that lots of you have had previosly asthma/lung problems, so maybe you could ask your doctors (I know it doesn’t sound very hopeful but is a new way to try if you can afford it). My treatment is a low one (1 pill a day), there are stronger ones (with inyections) wich have cured some Cholinergic Urticaria people (attending to my allergist). The most interesting treatment I’ve read in this forum is the hormones one (don’t know wich post), the pitty is that I did a extended research of my body a year ago and nothing was found (thogh I don’t know if they looked well for the hormones or only the tyroyds), so this is the only clinic way to treat me this now (I tried the antidepressants for a month, three months ago, and did nothing, also they were a LOT annoying, I exactly like a Zombie, even more that with the anistamines, wich now I back have to take hehe). Well, keep on up guys…
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Title: Re: A question for those who have been cured of Cholinergic Urticaria
Post by: Rogerq23 on October 17, 2010, 03:22:07 PM
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Quote from: hieveryone on October 12, 2010, 03:02:50 AM
I saw my alergist last week and I’m trying a new treatment. I also do my usual exercies/diets/mentally-positiveness that are complements to ease my life but she told me something of a new way of lowing the Cholinergic Urticaria that has cured some. The strange thing is that it is based on Asthma, wich I had ten years ago (5 before the beggining of Cholinergic Urticaria) so I totally disconected it from this (becouse it went away and I never had any lungs problems). I did a test ago and it showed that I didn’t breath completely well but without any problem. My alergist said it wasn’t related, that I should prove anyways becouse it helps a lot some people. The time to spect the first (if any) improvements is a month, I have been taken it for a week and nothing is noticed (Also the cold has come so this makes the Cholinergic Urticaria worse), the good point is I realice that now I can take a lot (cold) air into my lungs, this gives me some extra energy. I don’t want to make publicity of the mark, also I buy it here in spain becouse the state makes it a lot cheaper, I don’t know if it’s sold in the USA or England.
Anyway, I tell you all of this becouse I’ve read that lots of you have had previosly asthma/lung problems, so maybe you could ask your doctors (I know it doesn’t sound very hopeful but is a new way to try if you can afford it). My treatment is a low one (1 pill a day), there are stronger ones (with inyections) wich have cured some Cholinergic Urticaria people (attending to my allergist). The most interesting treatment I’ve read in this forum is the hormones one (don’t know wich post), the pitty is that I did a extended research of my body a year ago and nothing was found (thogh I don’t know if they looked well for the hormones or only the tyroyds), so this is the only clinic way to treat me this now (I tried the antidepressants for a month, three months ago, and did nothing, also they were a LOT annoying, I exactly like a Zombie, even more that with the anistamines, wich now I back have to take hehe). Well, keep on up guys…
What was your treatment? you didnt really say it… i can infer that it is a pill for asthma? I took 2 times a test to check my lungs potential and it was ok i dont have asthma but I used to cough a lot for a long period of time. maybe it is related..?
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Title: Re: A question for those who have been cured of Cholinergic Urticaria
Post by: MoshiMoshi on October 18, 2010, 10:36:02 AM
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My cholinergic urticaria goes during sumemr (may) and comes back during winter (october).
For me i notice:
-first my hands are able to sweat
-heat tolerance gets so high that i barely have the itching anymore
-sweat starts to come through
-cholingergic urticaria gone
Each stage happens about 4-5days after the previous
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Title: Re: A question for those who have been cured of Cholinergic Urticaria
Post by: hieveryone on October 18, 2010, 01:05:42 PM
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Yes, my treatment is only a pill of 10mg per day for the lungs (here is called singulair), I really don’t see an improve yet. What do help me are the stress issues (although I also think it’s not the cause), we all seem to be introverted people, foolish things like look everyone in the eyes while walking and never look down seems to low the agressivness of the atacs, though I do a lot of workout now so you never know.
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Title: Re: When is Cholinergic Urticaria gone?
Post by: Rogerq23 on December 08, 2010, 03:53:03 PM
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Cholinergic Urticaria is not an illness it is a symptom. Therefore, it is like getting swollen or diarrhea, when something causes it, it comes out. The real illness is a defective Immune System, so when we eat, consume, smell, touch or feel something that we are allergic to, our body releases a defense to those allergen as a natural reaction, releasing histamine so we will get urticaria. That is the reason why people prescribe us antihistamine.
The allergy usually appears during hot temperatures and dryness. They make us more prone to attacks. So urticaria is a cause or symptom of a hypersensitive immune system, more specifically Cholinergic Urticaria because we are the ones that can not stand heat and its the main cause to trigger the attacks. There are some people with the same “illness” and they get urticaria as well, but there are many types. Some people can get it when they are in the cold, which is called another way… So draw your conclusion.