Real RA: Side Effects of the Miracle

Yesterday, as I moved down the street with the first vague sense of woozy pressure building in my sinuses, it came to me that the next post in my Real RA series should be a look at the cost of the miracle. And by the miracle, I mean Humira and everything good and beneficial it does for me and my life, something about which I'd been known to wax rhapsodic. Repeatedly. I rarely, if ever, wax rhapsodic about the price I pay for this miracle and no, I'm not referring to the exorbitant financial cost (for which the Trillium Drug Program has my everlasting gratitude).

I am referring to the side effects.

Before I move on into this fascinating world, one caveat: I have always been ridiculously sensitive to medication and prone to developing as many side effects as possible. Perhaps my body sees this as a competitive sport. Also, getting fibromyalgia made this worse. Most people aren't quite as overachieving in their response, instead having a more reasonable minor – and usually manageable - handful of side effects. Therefore, if you are considering the Biologics, assume that you will not be like me.

Anyway. Back to yesterday. My family doctor had just given me my shot (I can’t do it myself due to dexterity issues with my hands) and sent me on my way with the usual goofy joke. I love my doctor. I leave her office, then the clinic, go down the street and by the time I'm halfway down the block, I can feel that woozy pressure building in my sinuses. A friend of mine who has a degree in pharmacy claims there is no way a medication can make its presence known that quickly. After 7 years on Biologics, I beg to differ.

I pop to the supermarket to buy groceries and by the time I’ve made it home half an hour later, my nose is nicely plugged. Some time later that day, I will have a sneezing fit that doesn't stop until I have cleared my sinuses. This can take up to 20 sneezes. This will also only temporarily solve the problem, because thanks to the Biologics, my sinuses have been in various stages of inflammation since January 2005.

In addition to the "sinus crap" as I poetically call it, I will also spend the next couple of days being more allergic than I normally am. It means that I can't eat adventurously during this period of increased histamine response and most certainly stay away from tomatoes to prevent hives. Not surprisingly, with increased allergies comes an increase in my asthma symptoms, but it is far more manageable than it was when I was on Enbrel. Back then, I could smell the moth balls in my downstairs neighbour’s closet.

A couple of hours after my sinuses make themselves known, the tired hits. A sense of fuzzy creeps over me, muzzing out my view of the world so everything's a little removed. On the day of my shot, my Mandatory Rest Period gives me the best sleep and I spend the next few days dragging somewhat. Not just in terms of higher than normal fatigue, but also dragging mentally. That sense of fuzzy I just talked about permeates my brain, as well. Things slow down and sometimes, things slow down a lot. Writing becomes more of a struggle, because it takes longer to find the words and then you have to string them together, nevermind making it all interesting. When I can, I try not to write on deadline on these days. If I have to, not much else gets done.

The first day of having my shot is also the start of an approximately 48-hour period in which I feel a vague sense of looming anxiety. Depending on my stress levels, this can become a fairly high level of anxiety. I've learned to ride it out, telling myself that I'll examine it more closely if I'm still feeling anxious after three days, but by then, I've usually forgotten about it all.

Approximately 6 hours after my shot, the ache starts. I don't notice at first, just get restless. Move around a lot in my chair, fidget, then start pacing. Sooner or later, the muscle pain will permeate the filters I normally slap on top of pain and I'll recognize that it's time to "enjoy" another effect of the drug: muscle pain. More like tiny muscles spasms. This usually wakes up my fibromyalgia and the two of them have the kind of ecstatic reunion normally reserved for long-lost lovers. You'd figure they’d get over it, what with it only being two weeks since the last time they met, but this is not the case. This party usually lasts a couple of days, although depending on other factors – stress, weather - it can set off a prolonged fibro flare.

Humira stings going in. As far as I can figure, it's because it contains citric acid as a preservative, but why matters less than the fact of the sting. It stings so much your eyes sweat. It stings so much that my doctor and I joke about people walking by her office hearing the swearing from within and being very confused by the contrast between the blue streak and the smile I usually wear going out. So. The medication stings going in. It also stings coming out. Which, combined with the muscle spasms, can make for an interesting situation down south. Until I started Biologics, I never really connected to the fact that the bladder is a muscle. By now, I’ve become used to feeling like I have a UTI coming on for couple of days after my shot. You can learn to live with a near-constant discontented muttering from your bladder.

I saved the most amusing side effects for last: the gastrointestinal festivities. It starts with a 50-50 chance of spending 2 days in one of two camps. One where everything smells wrong and nothing tastes right, where the queasiness means not a lot of food and not caring. Or the other camp where there's a yawning void in my stomach that can't be filled and I eat everything that isn't nailed down. There's no way of saying which way it'll go.

And there there's the really special stuff. Very shortly after my shot, the bloating starts. The injection triggers the development of a truly astonishing amount of gas, while at the same time significantly slowing down my bowels. That means the gas doesn't have anywhere to go. By the evening of the day on my shot, I look like someone placed a small beach ball in my mid-region. Sometimes it's fairly manageable, sometimes the pressure can almost be painful, making me wish for a hollow syringe I could jab in my distended belly, much like you do to cows that got into the alfalfa. Needless to say, gas-producing foods are not on the menu during this time. Only burping offers relief and I have learned to have a completely unladylike desire for the kind of belching that can rattle windows, even when they arrive without warning. I have also learned to not care much about this uncivilized behavior, although do try to keep my business meetings and outside activities to a minimum for a few days until my body is more predictable again.

Approximately 48 hours after my shot, my bowels wake up again and decide to get rid of all this accumulated air and engage in this process of excessive flatulence with an abandon that would be endearing if it wasn't also embarrassing. Research has shown that the average person farts 14 times a day - I don't want to think about what prompted that study - and RA medications generally easily double that number. Biologics… Well, let's just say that if farting were an Olympic sport, the Biologics would be considered performance-enhancing drugs.

So there I am, two days after my shot and there's nothing for it. You can't hold on to what you don't have in your hands, so I'm sure you can imagine what happens. See above re: schedule workaround to avoid being near other people. Which was a lot easier back in the days when I was single. When I chose my life partner, I didn't think to add “easily tolerates windy girlfriend” to the list of requirements, but it worked out well anyway. When in my vicinity a couple of days after Humira, David, bless him, pretends that this overachieving display of excessive air releases turns him on. It's one of the many reasons I love him.

Although the side effects continue on a low level, the worst of it is over after the first two days. That gives me another 10 days or so to not worry about the sky falling, wheezing, sneezing, hurting (more than usual) and being as gassy as a herd of cows that got into the alfalfa.

At the end of the day, none of this matters. Because Humira has giving me back my life and the side effects are just a minor cost for a miracle. In the big scheme of things, a bit - OK, more than a bit - of farting is nothing compared to this gift.

Just don’t stand downwind of me after I get my shot.


Diana Troldahl said…
Well-written, and your guy sounds quite a bit like mine, who always makes me feel beautiful no matter the circumstances :-}
Dana said…
Thank you for posing & sharing, Lene! I have not yet read such an informative (or entertaining) post on Humira side effects! I am very fortunate to be one who tends to not get any of the potential side effects from drugs. The worst I've gotten in my 4.5 years on biologics is a slight itch/rash at injection site! As such, I tend to not look too closely at the scary list of seemingly endless side effects published by the drug companies. It's nice to hear what real patients experience, though -- and if I do start to notice any of these things, I can know it's "normal"!
Eric said…
Thanks so much for the informative, helpful, and extremely amusing handling of the potential side effects of Humira. Actual loling at the possibility of farting being an Olympic sport. Very funny. Glad to know that some of Kim's side effects were just side effects and not some new disease. ;)
Unknown said…
Thank you for posting this, Lene. I now know thatI am not alone. Orencia doesn't mess with my sinuses as much as Humira did, but it does cause the bloating and empty feeling in my stomach. I eat everything, but nothing helps it. It just has to run its course. As for the "windy" issue, perhaps we need to move to Chicago. Then maybe no one would notice! LOL
Thank you sooo much for your post! I just started Humira and am having all kinds of "interesting" challenges. I took my first shot and thought whoa..need to take the next one around bedtime.I did feel a great deal better though.Everyone keeps saying it takes time to really work.My thoughts, if it gets better than this, I will be superwoman again. But..the gas and bladder issues that started creeping up a few days after have almost made me think twice about the next fuzzy headed, less pain excitement. I have been looking on websites for days now trying to see if these are normal side effects or if my body doesn't want to give up the fight of hating me. The sinus pressure in my ear is interesting when I bend over too. I really like being able to see the joints in my hands again, prednisone is helping too. Anyway, again I say THANK YOU for your post. I feel much better about taking my second round in a few days. Burpy and flame hazard learner. 😊

Popular posts from this blog

Weight Gain and Biologics: The Battle of the Pudge

What It Is Like To Wean Off a Tracheostomy