I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
#1 by juliagrayparrish on September 23, 2012 - 2:34 am
This is so true, when I’d been first diagnosed I’d been under the impression that everyone’s arthritis, rheumatoid and otherwise had the exact same life as mine did. It wasn’t until I’d bizarrely met a girl, who became one of my best friends, who also had rheumatoid arthritis that was alright on three ibuprofen a day and refused to take heavier medication, and when I went to camp and met children who were strapped to wheelchairs they hurt so bad, that I realized that there’s lots of people with the same disease as I am whose disease is completely different.
#2 by musefulness on September 23, 2012 - 10:35 pm
Thanks Julia. When I was first diagnosed I read Conquering Arthritis, which was written by a doctor who has RA. He thought that within his lifetime there would be at least 20 distinct forms of RA. Right now it’s a catch all term for diseases that share symptoms, but are definitely not identical. I didn’t give it much thought when I read it, but now it rings more true.