Okay, so a lot has happened since my last hive post.

And yet….not a lot has happened since my last hive post.

This is a picture of my arm after only an hour of sun exposure in 75 degree weather.

That line is actually one big hive because I made the mistake of keeping a hair elastic around my wrist for too long.

The prednisone worked as far as controlling my hives, but the side effects are miserable. And when it suppressed my immune system enough, it started to cause other problems with my health. Certainly not a long-term solution. My local allergist ran out of ideas and suggested I go to Mass General in Boston. He said they have a Chronic Uticaria (hives) program, and I could possibly be enrolled in a clinical trial for a new drug to treat my condition.

My mother and I headed to Boston. As luck would have it, I was hive-free that day. It’s like taking the car to the mechanic and it won’t make that grinding noise on-demand. Extremely irritating. But, we came prepared with an iPhone full of pictures and my Mom helped me stay on track as far as timeline. I almost completely forgot to mention the eye-swelling in my first telling of the story. They agreed with my local allergist, that this was textbook Chronic Idiopathic Uticaria, and would probably “just go away” after a while. Infact the doctor described it, verbatim as, “Someday your body will just say, Well, this is stupid. And stop producing so much histimine!”

Great. It will just go away. Probably. Someday.

They ordered a slew of blood tests. About 20. We ruled out HIV/AIDS, Lupus, Thyroid Disease, Cancer, and a bunch of other terrible stuff. I’m extremely thankful that I don’t have any of those terrible conditions, but I wish that we had gained an answer different than “it will probably just go away. Someday.”

About a month after my Mass General appointment, the Fellow assigned to my case basically shrugged at me via email (I was EXTREMELY grateful to be able to just email him back and forth, though) and suggested I seek out the clinical trial over at Brigham and Women’s.

WHAAAAAAAAT???? THAT’S WHY I CAME TO YOU PEOPLE!!!!!!

Turns out I had selectively neglected to ignore it when the doctor told me during my appointment that they couldn’t enroll me in the study. My mother explained later that they had told me this, but I didn’t understand it that way. I understood them to be telling me they couldn’t IMMEDIATELY enroll me. That we would try a more traditional course of treatment first. But I was wrong.

I was more depressed than ever. I called my mother on my way home from work. Sobbing while driving on the highway while being yelled at to pull over.

I eventually pulled into my driveway, and thank goodness for huge sunglasses. My neighbors were all outside and I managed to have a conversation with them without anyone knowing that my eyes were probably dripping mascara and red and very telling of my sad, sad drive. But then something awesome happened! I met new friends/neighbors, we all hung out, played some pool, had some drinks, and had an awesome time.

These hives cannot rule my life.

I needed to take control of my diet to control my weight. I can’t sweat, so I’ll keep cool, dress in layers, and try to wear loose-fitting clothing at all times to prevent hives. If my eye is swollen, I can’t go to work, and I can’t feel guilty about it. It’s okay to hide from the world when I feel like a leper, but when I feel normal, I need to ACT NORMALLY.

At first, I decided to make an appointment at Brigham and Women’s. I was very clear with the representative on the phone that I was ONLY coming in to try to qualify for the clinical study. I did not have any interest in doing a traditional course of treatment unless it was mandatory to get to the trial. She seemed understanding, but she was not a decision-maker. She would just be slapping my name into the schedule. So, I had doubts.

I followed up with the local allergist, mainly to express my displeasure at the fact that I went all the way to the clinic in Boston that he recommended only to find that they would not enroll me in the study. However, he then made a much better referral. Go directly to the pharmaceutical company that sells the drug, and get hooked up with a clinical trial that way.

Brilliant!

I cancelled my appointment with Brigham and Women’s. I had already wasted $300 in medical bills at Mass General, and another $40 on anti-histimines that didn’t seem to help. I didn’t want to waste another dollar on repeating history, and wasting time.

I emailed the folks at Genentech regarding their clinical trials of Xolair.

“Omalizumab (Xolair). This medication is normally given by injection to treat allergic asthma. It may help people who have chronic hives caused by an autoimmune response that haven’t been helped by antihistamines. Only very small studies have been completed, so more clinical trials are needed.”

I feel pretty good about this study. It’s not a brand new drug. It’s already FDA approved for the treatment of asthma, so not incredibly scary, and the side effects are minimal.

A woman from Beth Israel in Brookline, MA emailed me back, and after some correspondence, and general screening questions, I seem eligible for the study. Three out of Four participants get the actual drug and not the placebo, so chances are good. I’ll have to diary via an iPhone type thing twice a day, which shouldn’t be an issue for a techno-nerd like me. And — THEY will pay ME. What a nice change! I am pretty much broke, so even if it just covers the gas it will take me to get to Brookline, I will appreciate it.

They should have received my medical records by now from 2 out of the 3 offices that have significant records of my hives and treatments. (I saw two other doctors, but they basically referred me back out and didn’t do much.) They want me to make a preliminary appointment, but I might avoid doing that if I can. Broke broke broke, no money, broke. So — it is my hope that I can make an appointment for the first Wednesday in December to start the process. I’ll need to go three weeks in a row, the first two for extensive testing, and then the third if I am approved to receive the drug. (OR the placebo. Hoping for the drug though, obviously.)

So — that’s the hive update. A whole lot of no-real-news. I’m far more zen about the whole thing, and it seems to be mostly better than it a couple of months ago. Though, some days are really pretty awful. My eyes have been swelling far more frequently in the last month or two than ever before. I often have hives on my face.

But, what can I do? Not a whole lot, it seems. Gotta keep living life.

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