Moving on

I saw my rheumatologist on Tuesday. She had the results of my most recent blood tests, which were two months old. The shortage of specialists means I only get to see her once every eight to twelve weeks, so the blood tests are always old by the time we review them. In this case, it was only a comparative review. She compared my numbers from July to the first tests I had done in early September of 2013, the tests I had run in January of this year, and the second set of tests I had done in April. There was good news and bad news.

The good news is that there are no signs of lupus, which is what my current rheumatologist worried about. The bad news is that with the exception of a slight blip in April, my inflammatory markers and rheumatic factor have not changed since last year. This is despite nine months of treatment with Plaquenil and anti-inflammatories like Mobic and Relafen. I haven't gotten worse, but I haven't gotten better, either.

The next step in treatment is Methotrexate (MTX). This medication works by blocking enzymes in the immune system, theoretically stopping my immune system from attacking the rest of my body. But the truth is, nobody really knows how MTX works. What we do know about the drug is that it can cause some really nasty side effects, like hardening of the lungs, scarring of the liver, sores in the mouth, vomiting, diarrhea, and extreme fatigue. It's a good thing I am not interested in having more kids, since Methotrexate causes birth defects. I had to sign a form stating my intention not to become pregnant before the doctor would prescribe it. Another side effect of this medication is hair loss, which has been a real bugbear for me. I've written about it here before and don't feel the need to delve deeply into the psychological reasons why the thought of losing my hair chills me in a way that cirrhosis of the liver does not. I feel as though I have lost much of myself and what makes me ME to this disease. My hair is a huge part of my identity, for better or for worse. I don't want to lose it. But the doctor prescribed folic acid which helps lessen the side effects, including hair loss.

When I first started being tested for RA, I was adamant about never taking MTX. I refused to even discuss it. But here I am, a year later, and I will start the medication regimen this Saturday night. Three tablets, once a week. The dose may be increased later. So - what changed?

I got tired. If you want to know the truth, I am tired of just about everything these days. Tired of feeling bad. Tired of pain. Tired of exhaustion. Tired of my general mode of being, which seems to be stuck at "sick". I'm tired of feeling like I am coming down with the flu, and I feel like that about half the time. I am tired of going to work and feeling terrible after two hours in my office chair. I am tired of needing to take time off to rest. I am tired of feeling like an old woman when I'm only 43. I'm tired of not hiking, not biking, not working in my yard. If MTX can help - and the data says there's a good chance it may - then I am willing to try it. More importantly, I can't go on to the next steps of treatment without trying MTX because health insurance won't pay for biologics until you've exhausted all other options.

So - bring on the Methotrexate. I'm ready to move on.





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