Saturday, June 23, 2012

Rheumatoid Arthritis diary entry 6/23/2012 - the ever-decreasing paycheck

Injected third dose of Enbrel on Saturday. It's taken once a week. I'm not queasy about needles since I already take several a day (I'm on 3 injectibles for insulin-dependent diabetes) and have since my early 20s. 

I do have to say the Enbrel shot hurts like hell, as in the medicine burns going in and the delivery device takes about 10-15 seconds to deploy all of the drug, so you're pressing down on it for what seems like an eternity while your leg (or abdomen, the suggested injection sites) is on fire.

That said, if you're in as much chronic pain as many folks with RA are, dealing with 10-15 secs of acute pain is worth it if there's relief. My rheumatologist said it may take about a month to experience relief, which is less than the six months I've been on Plaquenil to what seems like little effect. With the latter it's hard to tell whether it's not working at all, or just mitigating the progression of the disease to some degree. 

The first week I took Enbrel there were no bad side effects; I got a low-grade fever and felt like I was going to catch a cold (I've not had a cold or the flu in over a year), but those symptoms went away after a couple of days. When I took the second shot that didn't happen. Aside from the leg I injected in being sore, I actually felt some relief in my joint pain on day 3 or so, but I did notice by day 6 (day before the next injection), I was feeling about as poorly as usual. What's really tough is that weather/barometric changes affect my RA and fibro so profoundly, overriding any meds or PT, that it's hard to tell what is working or not.

So dose 3 of Enbrel this past Saturday kicked my ass. The injection site was my right leg this time, and it was really sore Saturday. The nausea and dead-grade fatigue was heinous. That was complicated by the fact that, for whatever reason, the neuropathy in my feet (unrelated to RA) spiked -- the burning and stabbing feeling prevented my from sleeping, even though I was dead tired. That made for sheer misery. Sunday was the first day I really felt like I needed to use a cane (I stubbornly refrained and hobbled around). I went to bed around 7:30 PM and woke up around 3AM (I'm writing this around 4AM Monday).

The neuropathy was not as bad overnight; I actually upped my evening Lyrica (which I'm taking to help with the neuropathy -- it was a scheduled change anyway), and that may be what helped. I can't take a very high dose of Lyrica because it makes me dizzy and sleepy. I recall starting that med and thinking how on earth could I drive on this crap. It took a couple of weeks for the room to stop moving and to figure out what dose could help without rendering me useless.

The conundrum

Of course with many of these meds, in order to get real relief, I probably need to be on higher doses of some of these drugs, but I cannot tolerate feeling drugged or half-awake, since I need to be sharp to write and work. The end result is I'm probably undermedicated, and thus why I have to tolerate a constant level of pain. My guess this is the purgatory for chronic pain sufferers who have to continue to work because they are not 100% disabled -- you're not sick enough to be disabled, but you find yourself struggling to hold down a job in a level of pain that many people probably couldn't handle, and find yourself burning through paid time off (if you have any left) accommodating only the absolute debilitating pain days. 

Deformity starting

My wrists and hands, which are my livelihood, seem to be bearing the worst of the progression at this time, the joints in a couple of places seem to be larger and hot, which is why I have them wrapped in Ace bandages most of the time, and I wear pressure gloves at work. The outer wrist bones are getting larger. The doc said it's a favorite place for RA to attack in her experience. Nice.  

I get by; even though the hands and wrists are parts of my body most prominently affected, they are certainly not as painful as what's going on in my knees, ankles, hips and feet now. It's just that you can't do much about the other parts of the body -- I can't wrap myself like a mummy every day. I think the critical factor is being able to maintain the ability to drive. Between the neuropathy and bad flare days of RA, those are the most horrendous days because even the thought of driving hurts. Those days aren't numerous, but when they occur, it's almost a level of despair for me, a loss of independence.

It does make me glad I'm not living in NYC now. I don't think I'd be able to work much if I had to negotiate walking to and taking the subway and all those stairs as I effortly used to; and with Enbrel suppressing my immune system, taking public transportation is almost asking to be sick all the time. I think on my last post about this a commenter mentioned that she had to stop taking Enbrel for that reason -- she was catching everything from everyone on public transportation.

So for now, I have to work through this course of Enbrel (I have another 3 weeks on this script) to see if there's benefit that's noticeable. Fingers crossed. 

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