First Post In 19 Months!
I hadn't viewed or thought about this little blog of mine for quite awhile, but today it crossed my mind that I should probably give an update for any curious eyes.
In a nutshell - I'm much better! I would say 95% better. So much better that it's really not even an issue for me anymore. As long as I can keep my body sweating on a daily basis (preferably for at least 20 minutes), everything is A-Okay. The sweating helps to deplete the histamine stores. In the winter months I use a one-man sauna in my basement 4-5 times per week. In the summer I'm usually active enough that the sweating comes naturally. It's possible that if I stopped going in the sauna that things could escalate again, but I really feel like it wouldn't ever get nearly as bad as it was a year and a half ago. Something in my body has CHANGED for the better. I may always have to live with this very mild case of cholinergic urticaria, but it's heaven compared to the pain I felt at the beginning. So those of you that have it bad: don't give up hope!
For those that haven't read the whole blog, when the hives first started my body would not sweat. Even If I ran for 30 minutes I simply could not sweat, and the pain from the hives was excrutiating. It developed in the months before my marriage, so people joked that they thought it was nerves, but I really felt like something was chemically wrong inside my body...something was out of whack. For my wedding I was allowed a 2-week pack of prednisone to get me through the ceremony and honeymoon in toasty Cancun. So the wedding day arrived, and low and behold, I finally broke through and started sweating at the reception party! It was the first time I had sweat in months, and it felt awesome! I continued the steroids for another week after that (so total of 2 weeks prednisone) just to be sure, and ever since then my skin and the hives situation has been miraculously better. So was it the emotional release of the wedding or the steroids that finally knocked it out or both? I have no idea. I just know that now that I can sweat again I take every opportuniyt to do so because I don't ever want to feel that way again. I still get very mild flares every once in awhile if I haven't been sweating enough, but it's nothing like it was at the beginning.
So if you're reading this because you have severe cholinergic urticaria and just don't know what to do, ask your allergist about trying 2 weeks of prednisone. I can't promise you anything but it's worth a shot. It worked for me. And during those 2 weeks sweat as much as you possibly can if your body will allow. You've got to get the sweat going every single day to keep the histamine stores depleted. Good luck!
In a nutshell - I'm much better! I would say 95% better. So much better that it's really not even an issue for me anymore. As long as I can keep my body sweating on a daily basis (preferably for at least 20 minutes), everything is A-Okay. The sweating helps to deplete the histamine stores. In the winter months I use a one-man sauna in my basement 4-5 times per week. In the summer I'm usually active enough that the sweating comes naturally. It's possible that if I stopped going in the sauna that things could escalate again, but I really feel like it wouldn't ever get nearly as bad as it was a year and a half ago. Something in my body has CHANGED for the better. I may always have to live with this very mild case of cholinergic urticaria, but it's heaven compared to the pain I felt at the beginning. So those of you that have it bad: don't give up hope!
For those that haven't read the whole blog, when the hives first started my body would not sweat. Even If I ran for 30 minutes I simply could not sweat, and the pain from the hives was excrutiating. It developed in the months before my marriage, so people joked that they thought it was nerves, but I really felt like something was chemically wrong inside my body...something was out of whack. For my wedding I was allowed a 2-week pack of prednisone to get me through the ceremony and honeymoon in toasty Cancun. So the wedding day arrived, and low and behold, I finally broke through and started sweating at the reception party! It was the first time I had sweat in months, and it felt awesome! I continued the steroids for another week after that (so total of 2 weeks prednisone) just to be sure, and ever since then my skin and the hives situation has been miraculously better. So was it the emotional release of the wedding or the steroids that finally knocked it out or both? I have no idea. I just know that now that I can sweat again I take every opportuniyt to do so because I don't ever want to feel that way again. I still get very mild flares every once in awhile if I haven't been sweating enough, but it's nothing like it was at the beginning.
So if you're reading this because you have severe cholinergic urticaria and just don't know what to do, ask your allergist about trying 2 weeks of prednisone. I can't promise you anything but it's worth a shot. It worked for me. And during those 2 weeks sweat as much as you possibly can if your body will allow. You've got to get the sweat going every single day to keep the histamine stores depleted. Good luck!
posted by Jeff at 11:51 PM
40 Comments:
I was wondering if you ever got better or not, glad it was the former. Congratulations and thanks for the advice. I do find that sweating every day does help, I'm probably going to try prednisone again (I took it before when I first got hives, and it did nothing, but then again I wasn't sweating every day either).
Hi Danny-
Thanks for your comment. Of course I would talk to your doctor first, but you might try 2 weeks of prednisone instead of just one. I had tried the one-week pack with no help, and it wasn't until I tried the 2-week pack that I had a real breakthrough, combined with lots of activity and sweating. Let me know how it goes and thanks for the encouragement!
Jeff
Great to hear you are doing better. I have been suffering from the same affliction for almost 30 years. It started when I was 18 with the worst months being in the winter. For whatever reason it was not a problem at all in the summer.Maybe afterall it was your sweating theory. Thank goodness because I work outside. Over the last few years I have not been so lucky. Hives have really put a damper on my summer fun. I have tried virtually every med I can think of. Sweating has never been a problem for me, I seem to run on the hot side. But I will keep trying to beat this menace. I wish you all the luck with your continued success.
Thanks for your comments, Pete. Sorry to hear that the hives are putting such a damper on things lately. Have you tried prednisone? I tried large quantities of every antihistamine known to man but it wasn't until my 2-week pack of prednisone and lots of sweating that I was finally able to have a break-through. Best of luck and I hope that things improve for you.
Hi Jeff,
Just wondering if the hives ever came back since you made your post. I've been fighting this since March/April of this year ('08), I've gone through Allegra, Zyrtec, Atarax, Singulair, Xyzal...you name it! I'm getting close to the point of trying steroids if my allergist will give it a chance.
The combo of Allegra, Xyzal and Singulair is the most effective I've had so far, but even that's not quite enough. I still get some any time I get hot, although sweating does help it a bit.
I'm supposed to get blood drawn tomorrow to check for any stuff like thyroid problems, etc. and if my igE levels are elevated my allergist is willing to try Xolair. SUPER expensive, but I'll try anything.
Alan-
My hives are still at bay, and it's made much easier in the warmer months because I'm always sweating. I would ask you doctor to let you try a 2-week pack of prednisone steroids, and during that time be sure to exercise and sweat as much as possible to try to "break through it" . I can't guarantee anything but it did wonders for me. I don't even feel it anymore in the summer and just make sure to use my sauna every day in the winter. It's all about sweating out the histamine stores. Best of luck.
Jeff -
You know what actually has worked for me somewhat? I started taking Culturelle, that probiotic you can find at most grocery stores. In combination with Zyrtec and Singulair, I've had more symptom-free days lately than in a looooong time. It's worth a try for people out there dealing with this...a little pricey though. I think it runs about $20 for a month's supply.
Hey Alan-
That's a new one. Hey, whatever works for you. Seems like everybody responds to different treatments. For me it was prednisone, for others it could be any number of things in any number of possible dosages and combinations. $20 a month is a bargain if it will give relief. I remember thinking when my hives were at their worst that i would pay hundreds if not thousands per month if it would alleviate it. It's hard to put a pricetag on pain relief and having a normal life. thanks for your comments Alan and continued good luck. Jeff
Well, my allergist has given up lol :)
I've been referred to a specialist at John's Hopkins University; he's a doctor by the name of Dr. Saini, and he's something of an authority on the topic. I'm hoping to try a course of steroids or Xolair...hell I'll take Cyclosporin or leprechaun tears if they tell me it would help!
His resume is here: http://www.hopkinsmedicine.org/allergy/faculty/pdf/sainicv06.pdf
He seems to be really experienced in this particular area. I'm hoping he can offer some assistance.
I have to mention that the parting gift my allergist gave me was telling me to add Zantac to my daily regimen (currently Xyzal and Culturelle)...it really takes the edge off the itch, and when I actually break out in a large sweat I have only one or two hives. It's cleaning the apartment or normal activities where I really have a problem it seems.
p.s. Blogger cut off the long URL I entered...the ending should be pdf/sainicv06.pdf, not pdf/sa
Great blog and thanks for your updates on your progress. I also have been dealing with cholinergic urticaria for a about 7 years on/off.
I have a website forum and blog for other CU sufferers so we can post treatments and see how our hives progress. You may want to check it out sometime.
http://www.heathives.com
http://www.heathives.com/forum
I hope your hives continue to improve!
Well, Tuesday is the big day in terms of appointments...that's when I hit Hopkins. I'm going to see what sort of treatments they can offer me, and I'm definitely going to bring up steroids. I'm hesitant to try anything catabolic...I live an active lifestyle despite the hives and I'd hate to have to work double time just to stay the way I am right now, but I'll do whatever they say.
Thank god for the gym and Krav Maga. If I go to Krav, it's 1 to 2 hours of high intensity cardio and fighting. I am almost immune to heat-related hives for the remainder of the day after Krav. My skin feels like it can breathe, it feels almost like a drug. It's very hard to explain. My skin feels the same way you feel when you've been stuffed up and you can finally breathe. I wonder what the specialists will have to say about it all, and I will post back here to let everyone know how it goes / what treatment I get / how the treatment goes. Maybe it'll help someone else.
Unfotunately, no go on steroids. They want to try another antihistamine first...Preactin, I believe it's called? I guess I'll give it a shot and we'll see what comes of it.
They tell me it likely won't last much longer. Most cases they see resolve in the first year. I'm six months in, so they're hopeful. They say it's only a small minority that have it persist for a very long period.
One thing I found recently is that tea tree oil helps reduce the effects of histamine in the skin.
Study 1: http://www.ncbi.nlm.nih.gov/pubmed/12452873 (2002)
Study 2: http://www.ncbi.nlm.nih.gov/pubmed/15373773 (2004)
I started showering with a tea tree oil soap and found that I'm now able to take fairly hot showers without getting hives, even if I haven't done my usual workout routine which seems to give me a recovery period.
It doesn't seem to be a "cure" or anything of that nature, but it does give me a window of time to do normal activities.
Hope that helps!
hi jeff,
do you know what is the possible allergen associated with cu? i have hives only in the cold winter season and cant get into sleep at night.
to Anonymous:
You may have cold-induced cholinergic urticaria (something I deal with as well.) I wish I could offer some insight into what you could do, but I'm still working on that myself.
~Alan
Just to update you guys, I'm going to try Xolair. Found someone to prescribe it for me, at a whopping cost of $1000 / month. But I will let everyone know if it helps me, and the degree to which it helps me.
Wow jeff you were ahead of me I woke up the day after thanksgiving 08 and thought I had flea bites all over my rear we had a bon fire the nite before well it never went away and started to spread all over my arm legs chest back and eventualy my face over a few weeks well i went to the doctor he have me a 1 week predisone pack i had a very bad reaction to preds i actually passed out once and hit my head i felt horrible that hole week after the the pred i was ok for maybe 2 days and they came back full force well bendryle keeps them at bay most the time well I got to thinking i havent really sweated any at all sonce i got laid off from my job in october and i had a very physical very hot job so i sweated a lot then i did some googling and found your blog I so i started running everyday for the last week i have seen an amazing result from this i guess maybe my skin just needed to get cleaned out my grandpa always says sweating cures anything i guess he was right
Hi there, great to read your blog. I have had Cholinergic urticaria since i was 10, so for about 14 years now, varying in intensity. :( I only get it really when i exercise, so for i while i tended not to do any. But in bad periods even walking would set it off...I have been on all the drugs under the sun too, antihistmines, singular, and ranitadine as well as uv therapy with no joy. I have given up hope of getting rid of it now. But i saw your blog and intend to try exercising a lot more, something i have shied away from due to embarrasment,and will speak to my GP about the steriods. Although it is something i am not very keen on. Thanks again, and i am glad you have managed to beat it :)
hello, i have cholinergic urticaria as well. i am 17 years old and have had this problem since i was about 15. before i didnt notice it too much, i just got kind of itchy when i exercised (mostly played tennis) and then it went away once i started sweating, but this winter, i started getting actual lesions, little red dots all over my body when i exercise. I'm currently on allegra 180mg, xyzal, singulair, and zantac, and nothing has really changed. my allergist seems to see prednisone as a last resort due to its side effects, he says to call when i take it only in emergencies, for like 2-3 days max. so i have no idea what's going to happen in terms of like medicine, etc.
i tried going to the gym today, and i was gona try to break a sweat, then come back later to see if i got hives, so i started running on the treadmill. after like 6-7 minutes the pain was so much i couldn't go any further, so i stopped. how do you work through that when you sweat yourself out? maybe if i took vicodin or something it'd help....but its seriously so painful until i stop.
Also, i'm pretty scared about how long i'm going to have this, some of these comments say 14, 30 years....
Andrew-
I think maybe you should consult another allergist if your current guy won't let you take it for more than 2-3 days at at time. It is true that long-term use of prednisone is not a good idea, but I really don't think a week or two is going to hurt you. Then again, I'm not a doctor and I don't know everything about your specific situation, so please get another doctor's approval before taking prednisone for this lenght of time. As I say in this post, it wasn't until I did the 2-week pack that I had a break-through. And during that two weeks I was working my body and sweating like a pig. Things have been much much better ever since. Don't give up hope. Some people do go many years with this problem but it's also important to remember that most people get over it within a few years. My really bad period lasted about six months or so (I think), and now it is 95% better. So keep your spirits high and try another doctor. Consistent, daily sweating is the key, but you might only get to that initial point on a 2-week pack of prednisone. Prednisone should dull your hives a ton while you're on it which will allow you to run which allows you to get the sweat going which should start to get you back on track. Good luck.
By the way...Alan....thanks for your consistent updates. I have found them interesting and I'm sure they are proving to be a goldmine of information for others who are stumbling across these comments in search of help. I hope you're doing better. Is the Xolair working at all?
Hi Jeff and company,
Haven't gotten Xolair yet, but the good news is it looks like it may be covered entirely by my insurance, saving me $1000 / month.
For reference, I have Aetna PPO, and they've been very, very helpful. I'll update as soon as I have more info, but I know my allergist was exchanging paperwork yesterday with them, so hopefully within a week or two.
~Alan
Hi all,
I wanted to update with a little more detail.
I wouldn't say that things have gotten worse, but certainly not better. I've noted that when I don't drink a fairly decent quantity of water (i.e. I'm drinking more sodas at work and so on) the problem is exacerbated. Drinking a lot of water and taking vitamins like magnesium and potassium does help a bit; not a cure, but it takes that edge off most of the time.
As far as medicine, I'm taking 2 Zyrtec (generic) in the morning, and I take Atarax whenever the need hits, or I just feel like being zonked out for sleep. Nothing else really worked for me so I'm down to just that. Again, not a cure, but takes the edge off.
The Xolair thing was a bit of a hassle. I did find a great doctor in Baltimore at Johns Hopkins; his name is Dr. Sarbjit Saini. He works with Xolair a lot and found a case study of a guy about my age with a VERY similar background who was basically cured with Xolair, so he recommended me for it. He's very good at what he does, and therefore hard to get an appointment with (it took me months) but I highly recommend him. Also, I asked him statistically how long this lasts based on his many years of experience, and he said that in most patients he's seen it resolves in 2 to 3 years on it's own. So don't give up hope if you're dealing with it right now. There should be a light at the end of the tunnel.
My allergist in VA is great, but I believe she and the office staff are nervous about using Xolair; I will be the only person at the allergy clinic in Virginia Hospital Center taking it actually. I'm hoping to get some answer on when it will arrive and whether it will be covered by insurance next week; the Aetna people preliminarily said it would be covered in full. Keep your fingers crossed for me!
I also donated some of my blood to Hopkins for study. They're going to take periodical samples as I use the Xolair; I will be one of a very, very limited number of people with CU taking Xolair, so they want to see what information they can glean from my bloodwork. Of course, I'll let you guys know as I know. Who knows, maybe everyone here will find the cure in my blood! How cool would that be?
Take care guys. Anybody who's hive-y in VA, drop me a line :)
~Alan
p.s. Jeff, thanks for letting me use your blog comments as a sounding board for my strange journey.
Hello again, well after my post here i went to the doctors again about it. It has been about 3 years since i had it all investigated. And finally i have been prescribed a drug that seems to be doing the job :) I am in the uk so the name may differ, but it is called Fexofenadine Hydrochloride, and it says one to be taken daily,
however i just take in on days i feel i will have an attack, like if i go to the gym. It has been amazing, i still get the red patches but there is no itching or discomfort. I tried all the other drugs that have been mentioned here with no avail, but finally this seems to work. It even says it is used for Chronic Idiopathic Urticaria, which seems to be a step forward. So far so good, will keep you informed if it comes back.
@ Loola:
Ahh, you were prescribed Allegra. Unfortunately Allegra lost its effectiveness for me after a short time; it's pretty common with antihistamines from what I've observed. Something will work for a little bit, then become less effective. Even my 2 Zyrtec daily isn't working as well as it used to! I wish you the best of luck though!
Hi all,
Just heard back from Aetna. I will be getting Xolair, two vials every 30 days ($1000 / month.) Waiting to hear what, if any financial obligation I have there, but they do offer payment plans and they said they would figure out some way for me to get it.
I will post back as soon as I get the drug or additional information to let you guys know what happens.
Please keep your fingers crossed that it works!
~Alan
Aetna changed their tune, decided that they won't give me Xolair because cholinergic urticaria is not on their approved list of conditions treated by it.
Now I have to go through this ridiculous appeals process. Dr. Saini warned me this was a possibility but he said he'd step up and help me with the appeals process. This is a good thing because my local allergist doesn't seem too interested in the whole process.
Further updates as I can provide them. Wish me luck, guys. Looks like this won't be a short process.
~Alan
p.s. Although some experiences with Aetna can be positive, if you have to go through the specialty pharmacy, expect to get jerked around. The pharmacy and the member services sections don't seem to communicate well and my impression is the buck gets passed back and forth about who is doing what. Not impressed there.
Good luck, Alan. Hopefully your perseverance will pay off. Please let us know how it turns out.
Hey guys, a quick update:
Failed miserably at getting Xolair through my insurance company. Although they say they'll cover off-label usage in situations where documentation exists to prove a legitimate use, apparently the studies I provided were insufficient (I suspect they just don't want to be on the hook for an expensive medicine.)
So I'm going to start paying for it out of pocket, probably next month or so. I need to work out the details with my local allergist.
Things had actually gotten better; I went weeks without any hives. This past Sunday I was very active and got somewhat dehydrated...the hives came right back and have remained for a few days with decreasing intensity the more water I drink.
STAY HYDRATED! It seems to make a world of difference for me. I was taking hot baths for 2 hours with no hives until this past Sunday (now I'm temporarily back to 30 minutes WITH hives, but it'll go away.)
As usual, I'll update you guys with what I find out based on my Xolair experiences.
Hope you're all well,
Alan
Update: Well, no go on insurance paying for this, so I'm doing it out of pocket. For various reasons involving the local office, I won't be starting until August or September, but rest assured I will be back to tell you how it goes.
You know, I even have to pay for the needles they'll use in the office. What a rip.
I without trying put your "sweat it out" theory to the test. I had a massive attack early in the day at work that looked much like yours and later that night decided to induce an attack to photograph for the next doctors visit. To my shock and amazement I had nothing. tried pushups, squats infront of a heater. NOHING. Ran and took a scolding hot shower still nothing. Sat in the shower and felt sweat come off my forehead. i had no more histime to give. i walked around the house for the rest of the night marveling at the lack of hisitme. It was fantstic. i will try running tomorrow. maybe this emptying is the key
Wes
Hi Jeff!
I have chronic Urticaria, Autoimmune they've decided, but otherwise totally idiopathic.
I'm wondering if sweating more would help reduce my symptoms...? Heat only seems to make it worse. Mine are also made worse by pressure, so wearing a bra is torture. (hope that's not too much information.)
Would love to hear how you're doing now and vent about what it's like to be constantly itchy.
You (and any of your readers) can reach me at aslynnDOTbrownATgmailDOTcom.
Thanks folks, stay cool!
-Aslynn
Hey there! I posted a few years ago and let me tell you that I have been hives free for the past several months! Don't lose hope! In fact I took a Bikram Yoga class tonight and didn't even turn red!!! I am so thankful that I don't have to take any medicine whatsoever. Please do not give up hope it can go away...I believe my case was related to stress on my body and much that was going on in my life. Be thankful for what you do have, that's what I did. I always said thank you despite how horrible this condition left me. Take care everyone and my heart and prayers go out to you all. -Kimmy aka Mozartthekat from the Hives Forum
Hello All,
I was doing some research and came across your blog and the wonderful comments on here. I am suffering from the same condition. About 3 months ago, i began to have a serious itching and prickling feeling when I started to exercise. I am very active and I was going to the gym about 5-6 days a week and sweating was not a problem. So about 3 months ago, when I had the itching feeling and also began to notice I could not sweat at all. My body and skin was dry. I even went to a sauna and tried to sweat and nothing. Only my palms and upper lip broke a sweat. Its driving me nuts with this condition. I love going to the gym and being active and now I can't even do anything if i feel my body is getting warmer. I went to an allergist and he presricbe me hydroxyzine. It doesnt help. I hope to ask him about predisone.
Hi Jeff - I am a writer with Everydayhealth working on an article about living well with hives. I was hoping that you might email or speak with my by phone to share some of your experiences, altho I realize this blog is 8 years old now. Email me: madeline.vann@gmail.com
It's really good that making your body sweats relieve the symptoms of chronic hives. However it might not work with other because it will still depend on the histamine content of the body. Though there are natural solutions that will help you as well to relive the symptoms like health counseling. There are naturopathy experts like Dr. Sundardas that is willing to help you. We hope Jeff that you have time to visit our website naturaltherapies.com or email us enquiries@sundardasnaturopathy.com so we could talk about a naturopathy.
I am laying in bed having this very horrible hive attack that has been plaguing me in the past two weeks more than ever before. And I'm thinking about I want to literally kill myself because of this constant itching condition I've had from childhood. People in my family never believed there was an issue. I would complain and they'd say it was dry skin or an illusion. Once I got spanked because I was itching so badly I couldn't get up to do anything and I made everyone late for church. So I'm laying here in tears because I feel like killing myself. Something made me finally look up my symptoms and I found this blog. And I found people who are also suffering. And I don't feel so alone anymore. I'm not saying I feel like there's hope for me. I'm just crying because I'm not some super freak who walks around itching. Thank you Jeff for creating this blog.
Curious, Jeff: have you been able to keep the cholinergic urticaria away all these years?
I've been suffering with CU that lines up almost exactly with yours from what I've read on your blog. I've tried all the antihistamines, I tried drastic diet changes (clean eating, no sugar, little salt, etc.) with little to no difference, and I tried exercising for months with no avail–it actually got to the point I almost went into anaphylactic shock, so that stopped the exercise immediately. My allergist has run every allergy and blood test under the sun, which all show nothing (that's both good and bad in this case, as I'm sure you know). I'm at a complete loss and at the same point you were, where I'm unable to go outside unless it's 70º or lower and the sun's not harsh or just enjoy any general task or event because of CU. I'm starting to feel like a vampire, too. This started about 5 years ago, and just this year, it's gotten about 10x worse (and I'm guessing that's due to weight gain since I can no longer workout). About the only thing I haven't tried is prednisone. I'd be really interested to know if you've had to deal with it anymore since your two-week dosage, now, a few years later.
Thanks!
Hi Tessa-
It's no longer an issue for me. That two weeks of prednisone and lots of sweating in the south texas summer heat seemed to do the trick. I guess you could say I am cured (for now). Every once in a long while I will feel a brief, one-second wave of that prickly feeling race across my body but then it's gone immediately. I'm no doctor but I would definitely ask your doctor about trying prednisone, and then trying to sweat as much as you can while on it (even if you must immerse yourself in a sauna environment (skip the exercise, perhaps). Good luck to you...I know it's hard...but there is hope.
Jeff
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