Skip to main content

Visit to the allergist/immunologist

I need a break from my feature story, so thought I’d blog briefly about my doctor’s appointment on Wednesday. It was a mixed bag, and to be honest, I’m a bit confused. So, please take all of this with a grain of salt as I have a feeling I really don’t understand this yet.

Regular readers will remember that right before my last NIH trip I started breaking out in hives, and that while I was at NIH, they got pretty bad. It was only one of several weird things to happen on that trip. Kevin gave me some medication that controlled the hives well, but knocked me on my butt! And, after about a month it seemed to me that the medication wasn’t just making me tired, it seemed to be affecting my memory. I was making really stupid mistakes at work etc.

So, I went to see a local allergist/immunologist at KUMed and he put me on a pill form of Albuderol, Allegra and Hydroxychloroquine. I’d been on Allergra before, and it never seemed to do much for me. But, it seems to be working well.

As part of my participation in the trial, I report all of the drugs I’m taking to the NIH. There are some drugs you can’t be on and still be on the trial, thus I also want to make sure I’m not somehow breaking the rules and causing a problem with the data. Kevin had some concern about the Hydroxychloroquine, but said that I could take it for a few months and we’d see what happened.

It seems that Hydroxychloroquine dampens down the immune system, and my local doc thought that my hives were the result of an autoimmune issue. I didn’t quite understand all of this at the time. As I said, the drugs were making me a little foggy in the head, so I wasn’t my normal note taking self. That’s probably why NIH expressed some reservations about it.

Back in June the doctor did some blood work, but what I hadn’t realized until my appointment on Wednesday was that the blood work came back abnormal. He did a functional anti-FceR test. Apparently, from what I’ve been reading online, a normal score is anything below 10. I scored a 51. So, he thinks the hives are autoimmune related.

When I was at NIH, Kevin worked me up for all sorts of autoimmune stuff and everything came back normal. I do remember him saying one test was high, but that since I had hives, he expected it would be. I don’t know if that was the same test.

I asked the local doctor what he thought the long-term plan should be with the Hydroxychloroquine. I explained I was concerned that if I didn’t get off of it, it would be a problem for the trial. I explained it was time for me to go back to NIH, and I planned on discussing this with the team there. I wanted to know what he was thinking. He said I could go ahead and stop taking it and just see what happens.

He also threw out the term urticarial vasticulitis (sp?) – so I’ve been reading up on that. Interestingly, many of the symptoms are very HPSish. So, is there a link, or is he sticking that particular label on the problem because I’m having similar issues, even if they are HPS issues? And, most importantly, what does this mean for the trial???

Is all this just a really complicated way of saying something that isn’t a big deal? Or is it something I should really be worried about?

I left his office and went to see Annette. The social worker was there, and Annette asked me to stay while they worked out issues of child guardianship etc.

And then we had an HPS board meeting that night. So, I never really got to sit down and think this through until the next day. Now I’ve got a ton of questions, but I have a feeling NIH will be more patient about answering them, so I’m waiting for next week.

One of my fears is developing some other medical issue that would kick me out of the trial. What would I do about my pulmonary fibrosis then?

Comments

Unknown said…
Have you looked into the new Red Meat allergy? Been bitten by any chiggers or ticks before this started happening?

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria