Monthly Archives: March 2010

Leflunomide aka Arava

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Leflunomide (le-FLOO-noh-mide) is the new medicine that was recently prescribed at my wife’s recent visit to UCLA. Leflunomide or Arava is an arthritis medication and will help to reduce Jenny’s overall pain level, without having to increase her pain meds.

According to Sanofi-Aventis, the manufacturer:

Arava (leflunomide), a disease-modifying antirheumatic drug (DMARD), helps improve rheumatoid arthritis symptoms such as joint swelling and tenderness. But unlike many symptom relievers that only help relieve pain and swelling, Arava actually helps slow the progression of joint damage caused by rheumatoid arthritis. In addition, Arava is the only oral DMARD indicated to improve physical function.

It’s pretty exciting to think that a drug will not only take care of Jenny’s RA symptoms, but also help reduce the damage to her joints. We were told that it can actually heal joint damage that has already occurred, but that wasn’t mentioned in the blurb from the manufacturer, so I wonder about the accuracy of that claim. Regardless, Jenny’s been on it for a couple of weeks now and it does seem to be helping her joint pain, without producing any noticeable side-effects.

If you’ve had any experience with Arava, I’d be interested to hear what you thought.

Lupus and the Hulk

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I can already tell that this is going to be a strange rambling post, but stay with me for a bit.

I was driving my family home from dinner last weekend, and my wife and I had started talking about the old television show, My Favorite Martian. I have no idea why we started talking about this, but I do remember that we started the whole thing by talking about The A-Team television show, and I really have no idea how we got from The A-Team to My Favorite Martian

Maybe it was because Uncle Martin, Ray Walston, was always trying to fix his spaceship, and my six-year-old was talking about spaceships. I don’t know. Anyway, we were talking about Ray Walston and I told my son that the person who was in the show with him was Bill Bixby, who later played the Hulk on television. Well, he didn’t play the part of the Hulk, I told him, he played the part of Dr. Banner, who would change into the Hulk. The part of the Hulk was played by Lou Ferrigno.

As we were getting out of the car, my son was saying something about who could have laid the Hulk. Obviously, he misheard laid for played when we were talking about it. While my wife and I look at each other and smirk because he’s six and doesn’t understand how funny it is that he’s talking about the Hulk getting laid, he continues on talking about what kind of creature could have laid the Hulk.

He finally said, “It would have to have been a really big bird, and maybe green.”

We laughed really hard. He’s very cute.

So I was thinking about what I was going to write today, and I was considering talking about why lupus is called lupus, since a friend of mine had recently asked me that question. I’ve heard all kinds of explanations, including that the malar rash looks as if someone has been hit in the face with a wolf. I’ll buy the hit in the face by a wolf, but not with a wolf. Who throws a wolf at someone? Anyway, I was looking at the the Wikipedia page for lupus and discovered that Ray Walston died after a six-year battle with lupus. How crazy is that? How’s that for six degrees of Kevin Bacon? I got from Mr. T back to lupus in only a few steps. I win.

Keeping Track of Everything

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I need to find an effective way to keep track of my wife’s medical history. I’m not just talking about insurance papers or prescription records. I have all of that stuff covered. I need a way to keep track of medicine, symptoms, doctor visits, sleep patterns, and more. I also want to be able to look at this information and quickly identify trends and possible correlations between events, symptoms, and medications. Ideally, I would be able to do all of this from my phone.

Well, if such a application exists, I have yet to find it. I’m afraid that I may just have to create one.

Any system for charting or logging health information should have some portability and while I would love to be able to use my phone for this, I don’t think I want to have to transfer information from my phone into a spreadsheet, which is where I think the data will eventually reside. I’m going to start with a small notebook, like a Moleskine Ruled Notebook, which I’ve used before to record information on projects or things I’m writing.

Since there’s so much information regarding medicine that taken daily, I figure what I will do is only record changes in medicine. For example, if a new medication is added, I will make a note of it, or if Jenny forgets to take something on a particular day.

I can track particular symptoms, like fever or nausea, by just making a note of it on that day. The trick is going to be how to do that without having to keep too much detail.

I am also going to try and record things numerically using a scaled score. This is all pretty subjective, but maybe it will be helpful the next time something happens and we are wondering why.

All of this data will have to go into a spreadsheet. If I create one using Google Apps, then I will share the template with anyone who is interested.

Lupus Research

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Like many of you, I have a hard time keeping up with what’s going on in lupus research.

In order to make that a little easier, I’ve added a sidebar widget that provides updates from the Lupus Research Institute. If you move your mouse over a particular news item, you will be able to see a short snippet of the article. If it seems like something you’re interested in reading, you can click the link and read the actual article.

I spent a little time on the Lupus Research Institute website yesterday, reading some comments made by Dr. Bevra Hahn regarding the new lupus drug Benlysta:

These new results show that administration of Benlysta for one year, in addition to standard treatments for SLE, resulted in substantial improvement in almost 60% of people, compared to only 46% in the group that received placebo plus standard care; the improvement included better quality of life.

I had the good fortune to meet Dr. Hahn a few years ago at a health conference where she was featured as a guest speaker. I was really impressed with her. I have nothing but great things to say about the medical staff at UCLA. It is a very long drive from Fresno to Los Angeles, but it is worth it to get such great medical care. Jenny’s rheumatologist is fabulous.

I hope the sidebar widget makes it easier to stay up with the latest lupus news. I don’t want to overwhelm the site with too much information, but it’s good to stay informed.