Jeff's Hives

First Post In 19 Months!

2007-12-21T23:51:00.000-05:00

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!

Down To 2 Prednisone A Day

2006-05-29T02:30:00.000-04:00

I've scaled back the prednisone as directed, and at these levels (2 per day) it is most certainly not as effective. The hives are back with a vengeance. So it seems that, for me at least, 5-6 pills or more per day (25-30mg) is necessary. I will see what I can do to procure a larger amount.

Prednisone Is Working Well

2006-05-26T04:26:00.000-04:00

I am trying a 6-day pack of prednisone (a steroid) to see if it will be effective when I really need it (the wedding). I took 6 of the 4 mg tabs on wednesday and 4 on thursday. So far the results have been very good. We had very warm weather here for the first time this spring but I only had a few brief, minor flare-ups. I would say an 80% improvement. Unfortunately not a long-term solution.

Next Step: Accupuncture

2006-05-24T10:39:00.000-04:00

First things first. Thank you, Tom, for your email. It is important for all of us that suffer from this to stay in touch so that we can share ideas and maintain some kind of support system. Tom suggested cutting back on showers, as this will help the skin to retain more of its natural moisture and will help to alleviate the hives. I think I'll give it a try, and I'm not worried about body odor because, as I've said, I no longer sweat!

I visited my allergist again yesterday to see if there was anything else we could try. He glanced at the catalog of drugs that I am taking and was amazed that I was still having problems. He said that cholinergic urticaria usually responds very well to prescription anti-histamines. I think at this point he is just as baffled as I am about all this. He went ahead and approved the prednisone to help get me through the outdoor Texas wedding in June, and then suggested that next I might try accupuncture, which in some cases has apparently been pretty effective in helping people with body temperature regulation and other similar issues. He recommended an outfit in this area that is supposed to be top-notch with legitimate MD's. So as soon as I get back from the honeymoon I will be giving them a call. I doubt insurance will cover it but at this point I will do what I have to to alleviate the hives.

Keep cool.

4 Weeks Until The Wedding

2006-05-21T02:51:00.000-04:00

My wedding is a month away, and while I'm nervous about how the hives will react to the Texas heat, my allergist has allowed me to take prednisone (a steroid) for the two weeks covering the wedding and honeymoon. I'm also going to buy a coolvest to wear during the ceremony. They run about $200 but I'm desperate at this point.

Things are about the same. I am heavily drugged at all times and just avoid heat in all situations. I do not perform any physical activities or expose myself to the outdoors on warm days. For the most part I have become a vampire. I work only at night when it's cool. The sun has become my foe, sad to say.

Today I was thinking about the fact that Cincy has some of the worst air pollution in the nation. I think most local doctors would probably agree that asthma and allergies are more prevalent in this area partially due to the poor air quality, but is it possible that my condition was also precipitated or exacerbated by it? I've always had very sensitive skin, so perhaps the toxicity in the air finally just became too much for my skin to handle and it has reacted by developing cholinergic urticaria? I have no proof of this, but it is an interesting possibility, especially since prior to living here I lived out west where the air and water were pure and nearly pollutant-free. It would be interesting to see a break-down of what geographic areas of the nation have higher rates of chronic hives, and if there is a correlation with poor air quality. Any readers out there care to comment on this?

Jogging To Deplete Histamine Did Not Work.

2006-05-03T21:54:00.000-04:00

Well, it didn't work. As detailed in my previous entry, I jogged for 30 minutes this morning to try to deplete my histamine stores, and apparently it didn't do the trick, because earlier this evening I was trying to take a dance lesson with my fiance (the fox trot and the cha-cha), and 20 minutes into it I started to have an attack. We had to cut the lesson short, and I was really bummed out. I really thought this might work. So now it seems my only remaining option is steroids to get me through the wedding and the next few months. I'm calling the allergist tomorrow to see what he has to say. I'm really tired...too many drugs today.

It's Been 2 Weeks Since Seeing The Allergist

2006-05-03T13:37:00.000-04:00

Well, I've been on the prescription drugs for two weeks now, and in that time we have added allegra to the mix. So currently I take, on a daily basis, zyrtec, claritin, allegra, zantac, and hydroxyzine. I have personally upped the dosages on all these so that I now take about 10 pills a day just so that I am functional out in the real world, but I still have outbreaks when my body warms up. The drugs seem to delay the outbreaks and lessen the severity of the outbreaks slightly, but I am not satisfied yet, to be sure. I still have a minor attack every morning between 4 and 6 am that wakes me up. I am still reluctant to perform any kind of physical tasks outdoors, even going on a walk.

If things don't get better I will probably call the doctor yet again to see what else we can add to the mix or do to make this better, but I am starting to understand the fact that I may have to just live with this. Too many more drugs and I would just be a complete zombie, completely unable to drive or do much of anything. Since I'm getting married in June in Texas (oudoors), I need a backup method of relief so that I can enjoy my wedding. Therefore, I decided to test something that I have often seen mentioned on the message boards by others. Quite simply, I decided to try to deplete my histamine stores by jogging. I have heard that rigorous exercise for an extended period, though painful, can provide you with up to 24 hours of complete relief. So, though I was very anxious about it, I basically took a handful of drugs an hour before the jog (3 zyrtec, 2 claritin, 3 hydroxyzine, 1 zantac), and then I went for it. The first 4 minutes went fine; no itching. At minute 4 or 5 I started itching, and it quickly ramped up to a full-blown, agonizing attack. It felt like thousands of needle pricks all over my trunk and head between minutes 5 and 10, but I forced myself to keep going and running through the pain. At minute 11 the pain started to level off, and then slowly began to ease. By minute 13 it was obvious the worst was over and all that remained for the rest of the 30-minute jog was some mild itching and flares. Thinking that my mission had been accomplished, I then took a shower in cool to warm water, but as soon as I stepped out of the shower I had another wave of mild hives pain that lasted a few minutes. So it would seem that the histamine was not completely depleted, but maybe enough to give me relief over the next day or so. I suppose the real test would be some more physical activity this evening, and I plan on doing just that to prove or disprove the theory.

Some things I noticed. I hardly sweat at all during the run, which I have heard happens from others on the message boards. Very odd. Even my face was dry, though it had a very strange look to it after the run. There were white spots all over my forehead, and it just looked kind of patchy and sickly. The hives on my trunk looked different than they usually do. They were all white on my shoulders and back (no red border), though the hives on my chest seemed more reddish and similar to what I have experienced in the past. Also, the hives stuck around for a full 45-55 minutes, much longer than usual, perhaps due to the fact that I let the attack run its course instead of cutting it short with ice.

Well, I'm spent. More later.

It's Official: I Have Cholinergic Urticaria

2006-04-19T16:08:00.000-04:00

I have been officially diagnosed with cholinergic urticaria, though I've suspected for the last month that that was the case. The allergist, Dr. Bobbitt of Cincinnati, was as advertised: helpful, thorough, receptive to my thoughts, and confident in his diagnosis. I took the photos (posted a few days ago) with me and they seemed very helpful to him in making his diagnosis. Thankfully, the photos also spared me the agony of having to reproduce the hives for him in the office, and I would suggest others do the same if possible. Take real photos, not something you took with your cell-phone or something. He was so confident that it was cu that we completely skipped all the allergy testing.

He gave me prescriptions for zyrtec (10 mg/1 tablet per day) and hydroxyzine (25 mg/ as needed), and also said I should take 150 mg of Zantac twice a day and 10 mg of loratadine (claritin - 1 pill) once per day. Initially he wanted to prescribe Allegra but I told him that the samples of Allegra I received from my family doctor were pretty useless, so we settled on zyrtec instead. He seemed to suggest that 20 mg (2 tabs) of zyrtec would be best but that insurance normally doesn't cover more than 1 per day, so just to take 1 zyrtec and 1 claritin per day and see how it goes (zyrtec in the morning and claritin at night). He said that the zantac is useful in blocking H2 receptors, while zyrtec is good for only H1 receptors, so maybe that combination will prove effective. Worried that the zyrtec, claritin, and zantac might not be enough, I asked him about hydroxyzine, and while he agreed that it is a pretty powerful antihistamine, he was a bit concerned about the side-effects, mainly the drowsiness and the fact that it really has a detrimental effect on your ability to drive or perform tasks, almost as if you were under the influence of alcohol. He advised that it stays in your system for up to 24 hours and should only be used on an as-need basis.

So I'm hopeful, and relieved. Dr. Bobbitt seems commited to helping me through this, and wants me to stay in touch so that we can adjust the drugs (dosage/type) based on how I'm doing. He said that some of these cases can resolve themselves completely in a matter of months, and most are resolved within 2 years, which was music to my ears.

I'll give the meds a whirl and keep everyone updated. I go back to work tomorrow so hopefully my skin will behave! Stay cool.

Don't Want To Fall Asleep

2006-04-16T02:42:00.000-04:00

It's 2:30 in the morning and I'm dead-tired, but going to sleep means waking up in 2 hours in the middle of a hives attack...great fun. I wonder if I stayed up all night and slept all day if I would still have attacks in my sleep? Crazy. It's really true that you don't know how good you have it until something is taken away. What I would give to just be able to go to sleep or walk to the mailbox on a sunny day without fear of my skin exploding. This has really been one of those "I took my life for granted" experiences. This is really starting to sound fatalistic, I guess. It's not like I'm dying or something. I really just need to suck it up and stop whining like a baby. This will pass eventually (right?). This post will probably make no sense to anyone, but hey, it's 2:30 in the morning. Cut me some slack. Tomorrow is a new day. Happy Easter to all!

Every night at around 4 AM

2006-04-15T10:34:00.000-04:00

Yep, it's like clock-work now; i have an attack just about every night at around 3-4 am. Now I keep the blue ice block right next to the bed so that as soon as I am awoken by the attack I can slap it right onto my chest and try to cut it short. This despite having the AC running almost continuously. It is frustrating to be locked up in my apartment all day, every day, because Spring is my favorite time of the year (not a big winter guy), but all I can do is try to stay positive and have hope that the allergist on Wednesday will be able to give me ideas and some drugs that will help me re-enter my life and the world at-large.

Now Nightly Attacks

2006-04-14T13:18:00.000-04:00

had another attack last night while drifting off to sleep. got to the freezer/ice quickly enough that i cut it off before it got really out of control. so maybe this will be a nightly thing now. I guess I'm now realizing how beneficial the antihistamines were for me, though I thought them useless. Either that or the suddenly warmer weather is simply aggrivating my condition. So I've got the AC ramped up so high that I'm either freezing at night or I'm breaking out in hives...can't find that happy middle-ground. Van't wait to get my hands on the meds. I'm hoping he'll hook me up with steroids like prednisone or something like atarax (hydroxyzine) in combination with zyrtec so we can put this thing to rest. I don't mind the drowsy side-effects at this point...I just want to resume my life.

2006-04-13T16:34:00.000-04:00

...just took a walk to get the mail (about 100 yards) and on the way back started breaking out. this is ridiculous! got back and rushed to the freezer to get an ice block which is now firmly pressed against my chest...full-blown attack averted. sunny day. 80 degrees. is it possible i also now have solar urticaria? the doctor's appointment can't come soon enough. i need some serious steroids. this is no way to live.

Had an attack last night

2006-04-13T13:52:00.000-04:00

Had another attack last night, which surprised me as I had the AC running and the air temp was relatively cool. Seems like this happens every 3 nights or so. Perhaps I should expect more of it over the next several days as I am without the antihistamines in my bloodstream. This sucks! Guess I'll have to turn the temp down even lower tonight so that this place is an icebox.

Here Are The Photos

2006-04-12T10:56:00.000-04:00

Below are a few photos taken as I had an attack this past weekend. Note that this was an hour after taking 2 alavert and was triggered simply by sweeping leaves off a patio. The first photo is a close-up of my back, the second photo is full back shot, and the third is a frontal shot. These are the areas where the hives are mostly concentrated.

I have scheduled an appointment to see Dr. Bobbitt in Kenwood next Wednesday, but the catch is that I can't take any antihistamines for the next 7 days so as not to skew the test results (ugh!). So I have taken these next 7 days off of work because I know that without the antihistamines I would be in absolute misery. Just going to spend the next week indoors with the AC on and trying to rest. It's amazing and frustrating how this has pretty much brought my life, and my ability to make a living, to a standstill.

Been Over 6 Weeks

2006-04-10T00:23:00.000-04:00

Well, it's been over 6 weeks since all this started for me (started about mid-Feb.) , and probably more like 7, so I guess this can now officially be called a "chronic" condition, though I've been assuming that for the last several weeks. Guess I'm in this for the long haul. Today I had a bad attack while over at my parents' house, and I had a camera loaded and ready to shoot, so sometime in the next week I'll be posting the photos. The attack was brought on simply by sweeping some leaves off a patio for about 5 minutes, and I think the severity of it really surprised my family and fiance. My mom was on the phone immediately with a friend of her's who sees an allergist in town regularly, and she said the guy is very thorough and quite outstanding, so I plan on calling his office tomorrow to schedule and appointment. I'm not expecting much in the way of results, but maybe he can at least try some steroids on me or something...I feel pretty powerless right now, and with my wedding coming up in June, I just need some powerful drugs and pronto. Have not gotten ahold of the Reactine yet, but if and when I do, and if and when I use it, I will update results here.

Taking 4 Alevert a Day

2006-04-08T23:35:00.000-04:00

Loratadine (Alevert) has not been helpful in its recommended dosage of 10 mg per day (one 24-hour tablet), so I have gradually stepped it up to 4 per day. I would not recommend this for most people, but I seem to have a high tolerance for its side-effects (mainly drowsiness when taken in such high dosages). So I now take 2 at around 10 AM and 2 more around noon, and it now seems to be helping to decrease the CU episodes and the severity of each a little bit, though I do start to drag a little starting at around 4 PM. Still not satisfied, though, as the attacks keep coming, and if I were exerting myself at all I'm sure they would be just as explosive. Getting ready to try Reactine (ZYRTEC) (ceretizine), and am anxious to see if there is an even greate improvement. Ceretizine seems to be the antihistamine of choice for many CU sufferers, though it remains to be seen how it will effect me.

2006-04-07T22:40:00.000-04:00

This the first post of my Hives Blog. This is intended to be both a diary of my daily hives attacks, as well as a possible resource for others who suffer from it. I have not seen an allergy specialist yet, but from doing ample web research on my own I've come to the conclusion that I have developed a type of chronic hives called cholinergic urticaria. This appeared as a problem out of the blue about 6 weeks ago, and I'm doing my best to try to find a remedy so that I can avoid costly doctor's visits, lab tests, etc.

I read on a website that one way to test for CU (cholinergic urticaria) is to submerge the patient in hot water and wait to see if they break out in hives as their body temperature rises. Today I decided to test that on my body, so I took a warm shower, and slowly increased the temperature of the water until it was very hot. Several minutes went buy with no reaction, so I was about to give up on that experiment when, sure enough, I started feeling that intense itch all over, and the hives appeared. I shut off the water and cooled before things could really get out of hand because a full-blown attack is almost unbearable, and I saw no need in pushing it. Perhaps I will try again sometime and extend the shower to see if, as others have suggested, the histamine stores will eventually be depleted (for hours or up to a day). Further updates and photos to come.