Wednesday, April 27, 2011

Between a Rock and a Hard Place

The kenelog shot finally worked—after about 10 days. I am up and moving again. Still some pain and stiffness, but the intensity is greatly relieved. My jaw is especially better—it was the first thing I noticed! Hurray!   I even managed to plant some tomatoes and peppers this past weekend—I love my garden.


Ah, but there is a price for this relief.  A few months before I had my first big RA flare, I was working hard on a project at work. I came down with the flu, and then a light case of shingles. The rash was fairly light, but the virus itself laid me out for nearly a month. I was so fatigued that when my RA began, I at first thought it might be shingles again.

Fast forward—four years into my RA battle.  The shingles/chicken pox virus is one of those that always lays dormant in your body. So last spring after a particularly busy time, it reactivated again. The rash was light, but again, the virus itself made me feel horrible. Chills, fever and a terrible weakness. At first I didn’t realize I had shingles, but once diagnosed and started on antivirals it quickly began to get better. That time.

After that, each time I received my Orencia infusion, the shingles flared. Sometimes the rash would erupt and be full-blown, other times it would only cause tingling on my skin where the rash usually was. But always it made me ill. My gp calls it viremia, the feeling you get when you are coming down with a virus—chills, achiness, tiredness. Sometimes I would be so weak I could barely sit up—at one point last summer I spent nearly 3 weeks in bed—with shingles.

So before every Orencia infusion I began taking anti-viral drugs and continued them until the shingles went away. I even took a break from Orencia, and that seemed to finally let my immune system rest  and put the shingles back into hiding in November.  Until I got this kenelog shot. About a week after the shot, I noticed a little itching on my stomach, in the usual place. Then the chills began. And the awful weakness and tiredness that even prednisone can’t help.

More antivirals. And so even though my RA is better, I am still not feeling well. Less pain, but I still only want to sleep. The valacyclovir has kept the rash in check, and it’s only a little uncomfortable. I skipped my methotrexate shot for the week, trying to let my immune system get back on top of things.

I was already debating a change in biologics, and since I’ve reactivated the shingles once again, this may be the last straw. Would another biologic be less likely to keep it going? There’s very little research in this area, and I’ve been pretty much left on my own to find it. The only published research is on a few of the TNFs, which have been shown to cause an increase in shingles.

There do seem to be a few people, even without compromised immune systems, who have shingles over and over again. Doctors don’t seem to know what to do with them. I seem to be one of them.

In catching up on blogs this week, I came across a recent post at Gitzen Girl. I love her attitude. Love her blog, and she expressed what I was feeling exactly. I sat in tears.  

It’s from April 13 and titled “Really.”  Take a look—I needed to look at my situation from a different perspective. I am grateful, grateful that she helped me.

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