uveitis and rheumatoid arthritis

http://www.insighteyespecialists.com/patient-education/iritis/

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.

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