I’ve been very quiet of late because I have been struggling. I haven’t wanted to write a really ‘negative’ post, but it’s not really negative. Its reality. Its truth. I suppose it wouldn’t be honest for me to not admit that over the last few weeks/months the hits have kept coming. And they have knocked me down. And I have been experiencing bouts of depression and loneliness that I can’t just ‘mind of matter’ and wish away. No amount of positive thinking or optimism is enough right now. In all seriousness, the surprising thing is not that I am now experiencing this depression, but much more that I have gotten through the last few years largely escaping it.
I hate to admit that I am not coping. But I am not. I don’t know if the pain is worse now, or if my pain tolerance has fallen. Does it matter? The end result is the same.
One thing I am very sure about is that my depression is secondary to pain. When the pain is under control, there is no depression. In the beginning I remember doctor after doctor, person after person, telling me I was just depressed. Doctors, because my bloodwork was clear. People, because I looked just fine.
All. Wrong. In my case.
I know there are people who suffer aches and pains as a result of depression. It’s a physical manifestation of their depression, and the pain is very real. But this is not so in my case. I log my moods and I log my pain. If I overlay one over the other, surprise, surprise. When the pain has been bad for many days, depression starts to set in.
Now depression has made itself a little home here next to me on the couch…not that I invited it. Because I have received the blow that all my doctors have been warning me was coming.
I have to get off prednisone.
I know that everyone has a love/hate relationship with prednisone. But I have loved more than hated, because it’s the only thing drug that really helps, the only thing that keeps me moving. While I am in daily pain still, when I am taking 15mg of prednisone daily, usually the pain is manageable. I can walk. I can take care of my kids. I can go to the gym sometimes. I can look normal.
I still have the mega flares, where I spend a few days in agony and unable to move. But they aren’t every day. Life is far from ideal…but it’s comparatively liveable.
My doctors have been telling me for years that I need to get off prednisone, because it will cause me more trouble in the long run. The usual worry is bone density, but for me it’s my eyes. I have uveitis again, plus cataracts and increased eye pressure from the prednisone. My opthamologist told me I have to get my dose down to about 7.5mg, or risk losing my eyesight.
So my time is up!
I live on my couch now, and am taking oxycodone and ms contin (morphine) around the clock to deal with the pain. This is not living.
I have steroid eye drops for my eyes (irony). They are improving. I go back in a few weeks to get another check. Perhaps if they are OK, I can go back on prednisone. I doubt it.
I am still taking Enbrel, methotrexate, Naprosyn and plaquenil. Not helping. I am switching to a new NSAID – arcoxia. It is expensive. But worth every cent if it works.
Last visit my rheumy said she will switch me to Humira in 8 weeks if there is no improvement on Enbrel. She doesn’t think there will be.
So I wait. And wonder. Has anyone else had eye inflammation, uveitis, iritis? Or complications from prednisone use, like cataracts and/or glaucoma? Let me know how you’re dealing with it, or how it all turned out.