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?
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?
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