R.A. round-up

Quite a bit of upheaval and change after my Doctors appointment today. Problems in the short term that should lead to good news long term. If you want all the boring details, read on.

First, I need to lay out the case for why I've never like Methotrexate(MTX), the drug I've been on since March 06.

1. I have to remember to take folic acid supplements every day or my hair will fall out, I'll get sores on my mouth and I'll get nausea.

2. I have to get a Bilirubin & CBC count every two months to make sure my liver isn't getting damaged.

3. I feel like I have "methotrexate coma day" within 12-24 hours of each weekly dosage. My thought process gets fuzzy and I just want to take a nap.

4. And just to rub salt in the wound, this drug is why I had to stop breastfeeding Claire. (It would also cause servere birth defects if I got pregnant, but that boat has definately sailed.)

Still I have to take it. It did help when I was first diagnosed, although not as much as the Enbrel and Rituximab have helped. I've continued to take it while taking those as well. I thought it was because MTX helped their efficacy, but my doctor gave me a different spin today.

You see, when the FDA does testing for the new biologic R.A. medications, they can not ethically give a placebo to half the test subjects. So all the test subjects get MTX and half also get the new drug. Which means that FDA formally approves it ONLY if it's given with MTX. And my insurance company follows suit. My doctor disagrees. In the case of Rituximab, he feels that the MTX is unneeded and somewhat dangerous given it's side effects. And even though he is on the Board of Directors for the insurance, he can't get the head pharmacologist to agree to dropping the MTX as a requirement for receiving the Rituximab. So for the whole time I was on Rituximab last year, I was still on MTX even though it was really against my doctor's wishes.

Okay, back track a month. I got my labwork for CBC & bilirubin as usual. I do it in Canton, and a copy goes to my doc in Saranac Lake. Someone probably should have checked it more carefully, because my white cell blood(WBC) count was 1.8 (normal is 4-8, er....somethings per somethings...., anyway, it was low.) He had them run another check today and it's down to .8, not good. This makes me very prone to infections, so it's a bit scary.

There are two things that cause low WBC in R.A. patients. The less common is Felty syndrome, which the Doc would treat with Rituximab. More common is MTX toxicity. The MTX is starting to fight off my folic acid supplements and folic acid is necessary for WBC production. So as of today, I'm off the MTX, off the folic acid supplements, off the blood tests every month. WOHOOO. And I can celebrate by having a beer, because I no longer have to worry about the sixth reason I didn't like Methrotrexate.

6. You're not supposed to consume any alcohol while on MTX. Some people have the occasional wine, but with my Mom's history of liver disease I never wanted to risk it. Since I went from Pregnancy, to Breastfeeding, to MTX, I don't think I've had more than a few glasses of alcohol in almost four years. I also thought I'd be on MTX forever, and although nothing would stop me from a champagne toast at a wedding, I didn't think I'd ever have more than one glass at a time, of anything, ever again. (And I'm actually still going to play it safe by holding off on any celebratory beers for another month until I'm sure it's out of my system.)

And to follow up on the low WBC, I got an IV push of folinic acid today. I'll take high doses of that for another ten days, with CBC's done every week to make sure the WBC is up again. Whew!

And that's not all. I'm back on Rituximab today after an ill-fated attempt to use Humira. The Rituximab was wearing off after only 4 months, when I was hoping for a good 6 months, basically because I'm overweight. Plus, it's not too convenient to drive to Saranac Lake for a 4-5 hour treatment 4-6 times a year. I thought the every other week dosage of the Humira would go smoother, but instead I got less relief and giant rashes at the injection site.

A long chat with the Doc confirmed that the Rituximab is probably my magic bullet, and I just need to deal with the more frequent dosage. Or lose weight. And part of the reason for that was the sad updates to my family medical history. Doc uses Rituximab for treating Sjogren's Syndrome (which my Mom and her sister had) and for treating Dermomycytosis (Sarah) and although I'm fuzzy on the details, I know that Uncle Richard was getting an experimental Rituximab treatment last year for a form of anemia. So it makes sense to stay on a treatment that not only helps the R.A., but may stave off other auto-immune diseases that my family may be prone to. Especially the Sjogren's, which is often seen with R.A. patients, and if I do have Felty's instead of MTX toxicity, I'd need it for that too.

I should really invest in some Genetech stock.