Hello to all -
I've been on and off and stretching out Enbrel this year as I try to find some way to balance benefits and side effects... here is the story of yesterday and today after I had been off for the last 3 1/2 weeks.
Wellk it finally got so my feet were so painful I could barely walk yesterday – felt like I’d had a bullet shot right through each 3rd metatarsal (kind of like stigmata – which is what first happened with my hands, years before RA, on Good Friday yet! Weirrrrrrrddddddd.
So – I finally tried a HALF-dose of Enbrel. And it was kind of interesting – good things and then not so good things, as the day went on, but in slow motion so I could kind of at least track and follow and think about what was happening. Fact#1: my feet started getting very slightly better in mid-afternoon, heralded by a major hot flash (which I get sometimes anyway after Percocet, and I had had a ¼ tab Perc the night before. But it was really too early for that to happen.
Fact#2: feelings started coming back. When I’m off for a long time I build up a mental barrier as much as possible against pain etc. When I do the Enbrel that comes down. And I think that’s why I came CRASHING down the last couple times. Too fast, too hard. Easy doesssss iiiiit.
Fact#3: Around dinner time: gradual onset of fairly major headache, not a sinus headache but something I did have (lesser then) after my first shot of Enbrel, but never had much since. Lasted about two hours. Tried lying down; playing piano (hadn’t done that in a few weeks-evidence of something wrong). Then I started to get the slightly breathless feeling, like someone had given me a hard slap on the back and I couldn’t quite get my breath. Except that I could. It just wasn’t satisfying. Like drinking a sweet drink, but not getting the sweetness you expect. Hard to describe.
Fact#4: by bedtime the quasi-depression had set in. Cried a bit in frustration. Why do I have to feel worse in one way to feel better in another? It was only because of the walking problem that I finally bit the bullet. Don’t want to go there. But, yes, I guess everything has its price.
Fact#5: slowly fighting this, trying to think back how I have handled depressed episodes in the past. The best solution was always something creative (the hardest thing with my type of job is the lack of creativity in general, but not always in particular – minor ways at least). Thankfully it was a very quiet day at work (Tuesdays and Thursdays are sometimes very light). Found the most satisfaction in abstract drawing. Funny, I have felt impulses to paint, but I really am lousy at that. (haven’t tried the abstract business – but drawing is a whole lot more erasable! So maybe I will work on that…)
Not that I don’t have all different kinds of ‘projects’ lined up – I just haven’t either had the motivation or energy to do them when I had the time. And sometimes when I had the time, I didn’t care….. just apathetic. (Pathetic!) I am really hoping retirement (next September) will help me balance my life better, but I am trying my best not to wait until then, but to do what I can now to work towards that.
So - another life in the tightrope-balancing act of an 8-year veteran of the RA Wars! I WILL not give up! (at least not for long....)