I wanted the fairy tale. Remission. Pain free…or at least low disease activity. Immediately. The happily ever after that does in fact happen sometimes with biological dmards.
Why not me?
The day after my first shot of Enbrel I felt amazing arthritis–wise. Pain was mild…at least 50% reduction. Very little stiffness…and I had energy.
I also had a pretty bad cold. Colds can make you feel pretty lousy, but I am quite clear on what the symptoms of a cold are, and what the symptoms of rheumatoid arthritis are. The cold was unpleasant. But my arthritis improved.
This has happened to me before. I get another illness, a cold, a virus…something like that. The theory goes that the immune system swings into action doing what it’s supposed to do and fighting the cold. So it lays off your joints for a while.
I don’t know if there’s any factual or scientific basis for that theory. It does make some sense to me though. I’ve heard it quoted by other people. I’ve experienced it. Anecdotal, sure.
So I knew this, but I didn’t want the cause of my suddenly mild arthritis to be this. I wanted it to be Enbrel working.
I knew I shouldn’t do it, but I posted positive things all over the place. I told people I thought it Enbrel was working. I wanted to believe it so badly…it’s like you can make something true if you repeat it often enough. Positive reinforcement.
I wanted the fairy tale.
When I told people that I thought it was working, many of my arthritic friends told me they’d experienced similar things. That while my rheumy said it could take up to 8 weeks to take effect, many people knew after the first shot if it was working. I was thrilled. It was working for me.
And then I did what I always do…I started planning my return to the real world. My career jump start. I looked at courses to update my skills. I cruised the online job market with intent. I started looking at the time table at the gym at the hard core, high impact cardio classes that I used to do, and figured out a new gym schedule. I mapped out new, longer, running tracks on google earth, and worked a jogging schedule. I planned a holiday to celebrate, (and because damnit I deserve it after all these years of suffering) and it’s actually worth going away if you know that you’re not going to spend the entire time lying in your hotel room bed. I even thought maybe I might be able to get a social life…even meet someone.
I took my first Enbrel shot on a Wednesday. Thursday was amazing. Friday, Satruday and Sunday were pretty darn good. If it weren’t for the chest cold, I would have been out running. Monday was a little creaky.
Tuesday was back to the usual pain. Pre Enbrel shot pain. But this made sense to me, because I was due for my next shot. I couldn’t wait for Wednesday afternoon to take it again. To see if the magic happened again. To see if Enbrel was truly giving me the fairly tale.
Wednesday, shot time. No probs. I don’t mind needles at all…I know many, many people have needle phobias. I wouldn’t even say the shot stings…pain is relative!
I definitely feel Enbrel gives me an energy boost. That in itself would make it worthwhile. A break from the constant uphill battle of rheumatoid fatigue is a beautiful thing.
But no pain relief. Ok, fine. Probably in the morning.
Thursday was the same. Same old usual pain. Not severe, but definately not mild. Optimism faltering now. But every fairy tale has a villain…and needs a little suspense. Give it time.
Friday. Woken by pain in the night. Broken sleep. Hard to get out of bed. But I was still able to get out to a client meeting and do some work. (Small freelance job!)
By 1pm the pain hit with a vengeance. Hands, wrists, elbows, shoulders, hips, SI joint, neck, jaw, ribs, knees, ankles, toes…especially my big toes…and my eyes swelled up and started to close.
Full body mega flare.
So I called my friend and cancelled our dinner plans. I took endone for the first time in three days. I held it together until my ex-husband came to pick up the kids for the weekend. Then I poured a glass of wine and cried. A lot.
First from disappointment. Then from the sheer pain.
Saturday morning I was determined to outsmart the flare, and I thought I was feeling a little better. So I went to my yoga/pilates class. Half way through the class the pain got so bad I was fighting back tears. I bolted out of there so that no one would see me cry. Amazing how well you can move when you need to. But not for very long.
The rest of Saturday was a haze of ms contin, endone and wine. (Yes, a little alcohol does help the medicine go down.) I literally could not move. All of the above joints were aching constantly, and every time I moved it would up the anti to sharp stabbing screwdriver stabs and twists.
RA kicked my butt and turned me into an incoherent blob of lost hope and agony once again. There are no words for that kind of pain, in that many places. Don’t even talk to me about childbirth. Seriously.
Sunday was the same. But by evening, there was some relief. I was able to sleep for a few hours. I woke up with the pain back to about a ‘6’.
So. Much. Better.
I was able to go to the gym and ride a recumbent for a while. Then I did some bodyweight exercises. Very light. Very slow. Lots of stretches. I could have done all of this at home, but I needed to get out. Your home can easily become your prison when you have severe RA. I need to force myself to get out, even when I don’t want to.
And now its 3pm and the pain has become rather unpleasant again. So it’s endone, and a glass of wine. It’s defrosting a healthy meal from the freezer for me and the kids, even though I have no appetite. Its heat packs, and a heated throw, and couch time.
But it’s not depression. I look forward to Wednesday and my third Enbrel shot…and all the potential that is still there for relief. As another friend said, severe, longstanding RA can take longer to respond.
So I didn’t get the fairy tale. But I have a friend who started biological DMARD a few weeks before I did. Different biological – TNF blocker though. My friend hasn’t had a flare since the first shot.
My friend got the fairy tale. See? It does happen…so keep believing!
If I can’t have the fairy tale, this is the very next best thing.