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!

Down To 2 Prednisone A Day

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

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

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

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.

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

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

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.