Once a week I inject myself with Methotrexate to keep my joints from swelling up, causing great pain and becoming deformed over time. I've been doing this since May 2004 when my rheumatologist decided that it was time to try something other than anti-inflammatory medications. I'm a nurse so I know Methotrexate but before I started to take it for my arthritis, I knew it only as one of those cytotoxic drugs used to kill cancer cells. I now know it well, almost too well. It all started suddenly last March when the joints in my hands and feet began to swell and cause me considerable pain. Some days I couldn't even make it up the stairs in my house and I'd have to kind of crawl up on my bum. Some days I was so exhausted I couldn't get out of bed. It was a sudden and shocking change in my energy level and in my mood. I sank into a depression that felt like a deep and dark place from which there was no escape. Some days I even thought about ending my life. It sounds so meodramatic now but at the time I really felt overwhelmed. My job, which I love doing became impossible and I had to go on medical leave. My doctor sent me to a rheumatologist, a wonderful woman who spent almost 2 hours with me talking about the arthritis it seemed I had, about its treatment and about the depression I was experiencing. When I left her office I felt more hopeful because at leat now there was a plan of action. That hopefulness waned some as we tried one drug after without seeing any change. Before long we were out of options in that category. The time had come to switch to the scarier drugs; those that would alter my immune system to battle the disease attacking my joints. It's basically a no-win situation. I take one drug to supress my immune system to prevent it from attacking my own body and in doing so I make myself vulnerable to other illnesses - infections and viruses. At the time I didn't feel like I had a choice really; I couldn't live with the pain and how it was affecting my life and my spirit. I didn't know what the drug would bring but I felt like it was my only hope. I started out on the pill form of Methotrexate once a week but the nausea and vomitting for days after was intolerable. After a couple of weeks of that we switched to the injectable form which is much better for me. I only get nauseated some weeks and only for a day at the most. I hate those days but I can tolerate it. The other lovely feature of this drug is that it is very toxic to one's liver so I have to go for weekly blood work to monitor how mine is doing. Down the road I'll have to have a liver biopsy to see how it's being affected by the Methotrexate. See what I mean? Scary!
The challenge I face now is that my immune system is so depressed that I get sick with every bug that goes around. I've had more bad colds since I started taking the drug and they last so much longer. I've now been sick with my latest cold for 8 days. Really sick - laid flat in bed for the last 6 days with each day seeming worse than the one before it. I've missed more work in the last year than I ever have before. Lately I've been wondering if taking this drug is worth what it's doing to my immune system.
Today the doctor put me on an antibiotic and a steroid inhaler to combat the infectionI have in my chest and sinuses. More medications. I'm tired of it and yet there aren't a lot of options. There are some newer drugs out there but we're not sure yet if my drug plan will cover me for them. Psoriatic arthritis is still a grey area when it comes to the newer drugs. In many other countries they are using these drugs to treat it but in Canada they're using it and getting coverage only for Rheumatoid Arthritis. We're hoping that my plan will cover me cause if it doesn't I won't be able to afford it; the cost is somewhere around $25,000 per year. Yikes! The newer drugs are also immunosupressive but, unlike the Methotrexate, they aren't randomly so. The newer drugs target the specific T-cell that people with rheumatoid and psoriatic arthritis have too much of; the T-cell that is attacking our joints and, in psoriasis, the same T-cell that is causing my skin cells to proliferate at an overwhelming rate.
The challenge I face if I don't get coverage for the new drug is making the decision about whether to stay on the Methotrexate or to stop taking it. On the one hand, I like being pain free so I can do all the things I love - riding my bicycle, gardening and doing stained glass work. If I can't be in my garden working in the spring, summer and fall I would be miserable. On the other hand, I don't love the way it's making me so susceptible to every bug that's going around. I've not yet talked to my doctor about stopping it but I'm thinking about doing it - stopping that is. I'll have to come to a decision before I see her next in April cause if my drug plan says no then I want to be ready to make the decision. So what do you do when you hate both choices you have?