N=1 - Remicade (Infliximab) tomorrow

The last few weeks have been a bit bumpy - first my prednisone adventure, then a shot in the toe to fight the dactylitis. And then my grandmother died on Thursday, which drenched the little spark that keeps me writing with a vat of tears.

Suddenly it's Monday, and I'm starting Remicade tomorrow. I've been too caught up in everything else to think much about the comfy chairs, the free candy, and the two hour IV drip that Remicade infusions promise. But I guess I should get my head in the game.

I'm going on Remicade because my fab rheumatologist wants me to be doing better. We've decided that Humira is only taking me 75% of the way to "well". Our goal is 100%.

So what is Remicade? Here's a nice little blurb on Remicade and Psoriatic Arthritis from the Remicade website. Infliximab was developed at NYU School of Medicine, and is produced by Centocor, which is now owned by Johnson and Johnson. It is a TNF-Alpha blocker, like Humira. According to my doc, it has as good of a chance of working on my arthritis as Humira, but possibly will do better things for my skin. (Poor Laser Lady, we'll be putting her out of a job). Here's the blurb from Wikipedia on this drug.

So, here's the deal. Tomorrow, if the rheumatologist's office has their wifi up, I'm going to live-blog my Remicade infusion. Sure, it's not the State of the Union or the Blazers' game, but I think it will be fun. If you've been wondering what it's like to have Remicade, tune in at about noon PST. I'll write every 20 minutes or so, just to tell y'all what's happening in that room of big vinyl chairs. Does the needle hurt? Does it burn when it goes in? Did I get dizzy and pass out?

Way more fun than a Blazers' game.

If they don't have their wifi up, I'll blog it all in Word and transfer it over to Blogger when I get back home, so look for it by 5pm PST (children permitting).

Wish me luck. It can't be as bad as a death in the family, right?

Why am I so tired?

I'm REALLY tired today. I have the cold that won't quit, and the Humira has short-circuited my immune system so I'm not fighting the cold off as well as I could. Ironically, because I'm tired, I'm having a hard time getting the motivation together to write about an article on fatigue and inflammatory illnesses that I found last week. But this is really cool science... I've been excited to share it.

In short:

Although the brain is usually isolated from the immune system, the study suggests that certain behavioral changes suffered by those with chronic inflammatory diseases are caused by the infiltration of immune cells into the brain. The findings suggest possible new treatment avenues to improve patients' quality of life.

It was previously thought that immune cells couldn't make it to the brain... but this study shows that in folks with inflammatory illnesses, white blood cells called monocytes do get up into our noggins and make us feel sick. The researchers in this study were able to reduce "sickness behaviors"(fatigue, malaise, loss of social interest) in sick mice by blocking monocytes from the brain. And one way they were able to block these monocytes was by blocking TNF signals, which as we know is part of what Humira does.

I love the idea of these little mice suddenly exhibiting social interest. What, are they making martinis? Playing bridge? At least now I know that my Humira is making me sick and outgoing at the same time.

Generic biologics! Thanks, POTUS!

This just in from the WSJ - Obama's new budget includes increased funding to fast track the creation of generic biologic drugs. Here's the article.

Why is this exciting, you may ask? Biologics (like Humira, Embrel, and Remicade) are the newest form of treatment for many of us with autoimmune diseases, and they are also prohibitively expensive. I'm very lucky that our family's insurance covers my Humira shot twice a month. According to one website, the cost of Humira runs $1662 a month. That's almost as much as our mortgage. My co-pay for it is already $60 a shot.

This item in the budget is great news for those of use who lead more normal lives thanks to biologics.

However, note this line in the last paragraph of the WSJ article:

Makers of brand-name biotech drugs say the copies aren't identical to the originals and should undergo rigorous examinations to ensure safety.

If I understand it, the process for making biologics is very organic. These drugs are cooked up in big vats, all started from the same set of cells etc. And there's essentially just one vat for each unique drug. It reminds me a bit of Oompa-loompas, or yogurt starter - you gotta have a little bit of the magic goop to make that exact drug. And unless drug companies are willing to share their magic goop, the generic drugs won't be exactly the same as the originals. So I suspect these generics are long time coming... lots of research needs to go into each one to ensure that it is safe and that it works.

But still, thanks POTUS, for being forward thinking.

Itchy itchy scratchy

Yesterday US News and World Report published an article about the link between shingles and some of the common biologics used to treat Psoriatic Arthritis. Apparently it's been demonstrated that older folks with Rheumatoid Arthritis who were on anti-TNF drugs (Humira being one, and also Remicade) were twice as likely to develop herpes zoster (aka shingles). The link to the news article is here.

Now, N=1 of course, I can report that since being on Humira I've had 4 cold sores. 4 cold sores in 4 months. My usual rate of cold sores is about 1 every two years. Herpes in the mouth is herpes simplex 1 (usually), and herpes zoster is herpes type 3... they are slightly different viruses in the Herpesviridae family. But I think I can say that because I am now immunosuppressed, my body is less likely to be able to control a "creepy" virus like herpes (the Greek word herpein means "to creep").

What I was pleased to see is the news article I cite above is that the FDA is going to commit a lot more time to studying these Anti-TNF drugs so many of us are using. They are life-savers for many, but we need to be sure they are safe.