I’ve been gone for a while for reasons I will get into later on in this post. But in the last couple of days I’ve come back to visit with some old friends and because I needed to be here. I’ve been writing back and forth with Seenie (THANK YOU!) who encouraged me to take some of what I’ve written and make it a blog post so here it is (with some additions and editing):
Psoriatic Arthritis is hell. I read over and over again on this website about how terrifying the treatments can be, and how many folks really want to try all natural treatments rather than taking the risk of going on medications that have listed side effects that would scare any normal human being. But here is a reality check: As Seenie said to me, this ain’t your grandma’s arthritis, folks. PsA is real. It is terrifying, debilitating, and can KILL YOU. What’s worse is that it can take everything about your life that is whole and fun and good and turn it to shit. Treat this disease before it steals your life. Treat it aggressively for as long as necessary with anything that could possibly put you in remission.
I think we forget how important it is to stop and take stock of what we are actually putting into our bodies, and to make some hard choices about what our priorities are. Its human nature to fear what we don't understand, and unfortunately, PsA is one of the great unknowables of life. I was vain. I hated that my hair was falling out and I had bald spots and weird skin lesions etc etc etc...but the reality is that none of that matters in the long run if I end up alone and confined to my bed for the rest of my life, right?
You know, this common sense about treatment comes from watching my sister in law be misdiagnosed with mastitis for months before the doctor figured out she had breast cancer. By the time they figured out what was wrong with her it had already spread throughout her body - it ended up being terminal. For the last few months of her life I watched her fight with everyone about the need for Chemotherapy. She decided a macrobiotic diet was the only treatment she would take until it was far too late for anything else. It is true that she ended up dying from liver failure from the Chemo she finally agreed to take, but it wouldn't have been necessary for her to have such massive doses if she had just gotten the treatment when she was first diagnosed.
Then just within the last couple of years my Mom was diagnosed with terminal colon cancer. Instead of sitting around and being "all natural," she aggressively fought the cancer and is now completely cancer free. She was originally given 6 months to live, and was told she had less than a 20% chance of making it off the operating table. So yeah. I'll take any treatment that seems like it has any chance of working - up to and including experimental drugs.
I am so sad when I read people's posts about being too afraid to take some of the meds because I know how bad PsA can get. I've been in a 4-5 year flare that we cannot get under control. No amount of MTX, Sulfasalazine, Prednisone, etc etc is enough to whip this thing in shape - and I can FEEL my body getting weaker and less able to fight this crap off every day. When I switched from MTX pills to the injections, my psoriasis almost went away completely. My joints were still bad, and my energy levels were still in the toilet, but at least there was a physical reaction to the medications which gave me hope. But apparently, my body has figured out that little trick because the psoriasis is coming back with a vengeance, and my joints are deteriorating at an alarming rate. I keep telling myself "this, too, shall pass" but it’s getting harder and harder to believe it. And oh God, here I am whining again. All of this is 100% of the reason I haven't been on here much in the last few months. I feel like it is my job to be the optimistic, loving, caring, and supportive one, and I just haven't been able to be that. Somehow the thought of my coming on here and writing about the black pit of depression that I've been spiraling down into would make it too real and too hard to dig myself out of. Not only that, but I was afraid that someone would give me the swift kick in the pants that I so desperately needed...I am an expert at avoidance! But, I'm back. I'm trying to remain positive, and will help others as much as I can for as long as I can.
If your doc wants you to take Methotrexate or biologics, DO IT. Don’t wait. Don’t fiddle around with stuff that you read somewhere on the internet that someone somewhere said might “fix you.” It won’t. It might treat some of the symptoms, but it will do nothing for the seething mass of ugliness that is your immune system. MTX has saved my life - at least the parts of my life that I am still able to have, and I, for one, am extremely grateful.