Eyeballs. Enbrel. #lupus #stillsdisease

I’ve stopped the Actemra infusions and switched to once-a-week Enbrel injections. So far I’ve done 2 injections with the auto-injector. When the pharmacy fills my prescription I think they will be giving the prefilled syringes instead. The auto-injector hurts. It’s easy to use, it just jabs really hard.

A few days after my first injection I noticed my back muscles felt a bit better. It wasn’t miraculous relief but I was suddenly able to sit more comfortably after months of pain and weakness. I still feel hot during the day but I’m noticing I get the chills now, which I wasn’t before. I feel a little less uncomfortable in the fever department some days. Also, I had a few days where I didn’t have bladder pain. It was short lived, but it happened.

I’m going to continue with the Enbrel for 12 weeks and see what happens. My doctor is excited because Enbrel is much cheaper than the other medications that we were looking at, like the Kineret.

I went to the opthamologist last week. I haven’t been able to wear my contacts for the past few months, and they haven’t been very comfortable for years. I already use restasis but have been feeling like my eyes are still dry and gritty. I’ve been worried about having autoimmune inflammation in my eyes. I figured they would tell me I just can’t wear contacts anymore.

It turns out, for a change, that my problem is a lot simpler than that. I have allergies. I started using pazeo drops and for 2 days I’ve been able to wear toric lenses. I couldn’t wear torics at all before. Now I can see sharper when I wear contacts. Before, I was just using regular contacts. They were good enough, but not sharp. I haven’t tried wearing makeup with contacts again yet. I’m still giving the drops some time to work. When I put my contacts in yesterday, they still felt gritty for the first hour, but felt better after that. I’m hoping to get continued relief so I can wear my contacts more often. It’s nice to not have a pair of glasses on your face all the time, especially on headache days.

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4 Comments

  1. I have an autoimmune disease (AS) and eye irritation as well. We have a similar story! I assumed it was connected to my autoimmune, but Pazeo was prescribed to me and suddenly my world became so much better. It’s been a year now and the pazeo seems to have lost its potency with me. My eyes are killing me again. I still question if it’s related to my AS. The issues are year round for me. This post is pretty old… Is pazeo still working for you?

    • Hi Jamie,
      Thanks for reading my blog! I’ve been on Pazeo for about a year and a half, It’s only ever given me mediocre relief, but I feel it’s definitely better than nothing. I feel like the relief has been consistent, although on bad days I find myself using them twice. I still can’t wear my contact lenses much even though I used to be able to wear them every day. I feel like I am allergic to anything around my eyes, makeup is a challenge. Is it possible you could have developed chronic dry eye in addition to your allergies? It is especially common in autoimmune diseases. I know there are other drops you could ask your doctor about that might help, like restasis or steroid drops. I originally thought I had chronic dry eye but then was tested by an opthamologist and she said I was making plenty of tears. But sometimes I wake up with my eyes feeling “sticky” in the night so I don’t know if that’s just the allergies. Also, I know that some people with autommunity are also afflicted by a type of inflammation called uveitis. I hope you and your eye doctor can get to the bottom of your eye troubles, I know how uncomfortable it is.

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