daily challenge

Inspired by Elisabeth, I joined Daily Challenge. I think it will be good to help me get healthier all around. You do (shockingly) different challenges every day ranging from mental health and emotional well-being to physical health and eating better and way, way more.

If you’re on there, look me up! We can encourage each other and help each other reach our goals. Nice, right?

Nessie:

Can anyone help her out?

Originally posted on Dance Shoes and Pill Bottles:

Hi!

Long time no blog, huh?

Well here have been some things that have been on my mind lately…

For those of you out their in a relationship (dating, marriage, life long partnership, etc.) how do you approach the topic of RA with your partner? Recently-ish I’ve found myself in a committed relationship and even though we’ve known each other on the grand scheme of things for a long time, most of the time I was in remission and then we drifted apart right before my RA decided to kick my ass again and now that we are dating again it’s kind of weird seeing what his lack of understanding about just Arthritis in general is.

And even though this really frustrates me because, as a wanna be advocate for arthritis, I want to get the word out that RA isn’t your grandparent’s arthritis and that also RA isn’t just…

View original 159 more words

more on the methotrexate shortage (and a short rant)

Methotrexate Teva 100mg_ml 1x50ml -pakning

Methotrexate Teva 100mg_ml 1x50ml -pakning (Photo credit: Haukeland universitetssjukehus)

I stumbled across this article from the Grey Lady via Rheumatoid Arthritis Guy on the critical need for more methotrexate. The article says, in part:

“This is dire,” said Valerie Jensen, associate director of the Food and Drug Administration’s drug shortages program. “Supplies are just not meeting demand.”

The drug is methotrexate, and the cancer it treats is known as acute lymphoblastic leukemia, or A.L.L., which most often strikes children ages 2 to 5. It is an unusually virulent cancer of white blood cells that are overproduced in bone marrow and invade other parts of the body.

The cancer commonly spreads to the lining of the spine and brain, and oncologists prevent this by injecting large quantities of preservative-free methotrexate directly into the spinal fluid. The preservative can cause paralysis when injected into the spinal column, so cannot be used for this disease. Methotrexate is also used to treat rheumatoid arthritis.

Ben Venue Laboratories was one of the nation’s largest suppliers of injectable preservative-free methotrexate, but the company voluntarily suspended operations at its plant in Bedford, Ohio, in November because of “significant manufacturing and quality concerns,” the company announced.

Since then, supplies of methotrexate have gradually dwindled to the point where oncologists now say they are fearful that shortfalls may occur at many hospitals within two weeks.

I’m not really sure what’s going on with the manufacturing of MTX. According to the FDA, several companies that make the injection form of the drug simply decided to stop making vials of certain sizes. I don’t know why and haven’t been to be able to find much information about it. I’m generally not a conspiracy theorist and tend to (want to) believe people will do the right thing, but there doesn’t seem to be much reason for creating a shortage of a drug that treats childhood cancer—and several autoimmune diseases.

Which brings me to my short rant. Just a post script for the N.Y. Times: Many of us are on methotrexate, and we don’t all have rheumatoid arthritis. We have lupus and psoriatic arthritis and ankylosing spondylitis and so many other diseases. Maybe a better way to note that MTX doesn’t only treat cancer is to say that people with certain kinds of autoimmune conditions—like R.A.—also take the drug. Just saying.

double edged sword

Methotrexate Teva 100mg_ml 1x50ml

Methotrexate Teva 100mg_ml 1x50ml (Photo credit: Haukeland universitetssjukehus)

Taking a forced vacation from methotrexate due to a drug shortage led me to some interesting discoveries. The first few weeks off the drug, I felt great. Amazing, even. I was less tired; I had more energy; I got fewer headaches. But that didn’t last.

Enter phase two: what I like to call the “remembering why I was on MTX in the first place” phase. I hurt more, so I was exhausted all the time and short-tempered. My psoriasis came back on my scalp. My PsA was definitely much less well controlled—which is funny, because I didn’t think it was doing all that well even on the MTX.

But my awesome NP found a pharmacy that had a supply of the stuff coming in, so she sent in a scrip for me. It has the preservative, which is different but not bad. I took it for the first time in a long time last night, and I feel downright horrible today: nauseated, delightful headache, hot flashes—the whole nine yards. I don’t know if it’s a reaction to the preservative or just to getting back on my favourite highly toxic drug, but there it is. (And it’s not from mixing alcohol and MTX; I was DD for yesterday’s Super Bowl festivities, so I didn’t touch even a drop.)

When I first found out about the drug shortage, it seemed a little like Providence: Maybe this was a sign that I could get off one of the three main drugs I’m taking (which are MTX, Plaquenil and Enbrel) and still be OK. Maybe I can reduce my drug load a bit and still feel the same as I do on them. That turned out not to be the case. And while that definitely bums me out some, I’m glad that I can feel something close to normal even if it takes two injections and 42 pills per week to get there.