I’ve been on Remicade more than three months, now. Before that, I was on Humira and Enbrel (not simultaneously) for nearly a year. Because of my high deductible, I didn’t get an MRI when I was first diagnosed with ankylosing spondylitis. Remicade obliterated my deductible so I finally had an MRI on my sacroiliac joints this past Monday.
My doctor advised me that it’s possible that the test wouldn’t show any inflammation, but today I received the news that I have inflammation consistent with ankylosing spondylitis. This is good news. I don’t carry the HLA-B27 gene, so this shows that we are treating the right disease, we just haven’t found the treatment that works for me. For starters, we are increasing my Remicade dose to 8 mg.
I don’t know if that will help as I think my problem lies in my superhuman metabolism. Medication doesn’t stay in my system long. The dentist has to give me extra novacaine and the symptoms still have nearly completely subsided when I get home–only a ten minute trip. It’s the same with surgery. I’m not aware of waking up in the middle of a procedure but I came close when I was ten. I was at the oral surgeon pumped full of nitrous oxide. I remember hearing the nurse telling me to breathe deeply right as I was waking up so that more nitrous could be administered. I’m sure it’s not very pleasant waking up in the middle of surgery.
If I could take Humira weekly I’d be in pretty good shape. I remember around seven days out of fourteen where I was pretty normal. The problem is that the medicine isn’t approved for weekly dosing to treat my illness.
All in all, it’s good news. A pastrami on rye would be better, but I’ll take what I can get.
The old David Lee Roth tune comes to mind this morning, yet it is antithetical to how I’m feeling since Thursday’s Remicade infusion.
This visit ended with a twist of sorts as my hips were injected with steroids in an effort to curb some of the pain. Instead, at least for now, they are stiff and achy; it is reminiscent of having to chisel and pry and hammer a worn out strut. (I am no mechanic, so any repair I make involves pry bars and hissy fits.
As soon as I complete my shift at work, I’ll be back in bed like the past couple of days. This is only a bonus from my typical searing pain in my lower spine. My upper spine feels like it has been contorted by a gorilla. I think farmers give their sick horses better treatment when they lead them out to a pasture, gun in hand. And no, I’m not implying anything as I’m against euthanasia. I’m not above whining, though.
I’ve been feeling pretty horrible the past six weeks or so. I have had my share of hiding in the bedroom. I’m just frustrated today.
(Cue DLR) — THIS MUST BE JUST LIKE LIVING IN PARADISE.
Almost 2 1/2 months since my first Remicade infusion and I’m still trying to determine how much it is actually helping. I just came off a flare up that lasted about a week and a half. I’m still not feeling terrific. Granted, I have had some days where I felt pretty good, but I don’t know if Humira is better or not yet.
Ankylosing spondylitis is a real bear and when my symptoms are excruciatingly apparent, they seem to be increasing in severity and scope. My lower spine feels as if it is bathed in flames and the pain in my hips is increasing. Then there is the newest symptom. When I lay on my back, my chest hurts in the sternum area.
I’m curious to know if you can stack immunosuppressants like bodybuilders do steroids. I figure if I get some relief from Remicade and some from Humira, that could be favorable. Granted, the risks are elevated, but why worry about the cancer you might get tomorrow if you are enduring crippling pain today?
I’ll see the rheumatologist on the sixteenth when I get my next infusion. In the meantime, I’ll just lurch like Godzilla.