Saturday, October 15, 2016

Eight Weeks Later

Eight weeks ago this past week I had my hospital adventure. I am, all things considered, doing well, but it’s those things to be considered that prevent me from talking about this experience as one of progress. Because, so far, it really isn’t.

The past eight weeks haven’t exactly been a picnic, as I wrote about three weeks ago, because of the gout that’s plagued me since the day I left the hospital. However, I think I now know why that’s been the case. The next step is to fix it.

After my post three weeks ago, the gout attack I mentioned got worse for the weekend, then eased the following Monday. I was able to get out and about again, and went to buy cherry capsules to begin them again, the first time since before this all began. I was walking basically okay at the time—a little limpy, but okay.

The following week, the symptoms all but disappeared. However, given my experience of the gout attack waning, only to come roaring back every bit as bad—or worse—than before, I joked that it was “in remission”. That turned out to be apt.

A week ago today, I woke up with a sore elbow. I didn't think anything of it—I thought maybe I’d just slept on it wrong. But the next day, this past Sunday, it was evident: For the first time ever, I was having a gout attack in my elbow. That attack is still going on.

There’s only one drug, allopurinol, approved for my GP to prescribe to prevent gout attacks, but, as I must have explained before, I have to be symptom-free for two weeks before I can start it. Otherwise, I’m told, it causes a terrible gout attack—which does make me wonder: After 7 out of 8 weeks with often severe gout attacks, how much worse could it possibly get?!

Anyone who knows anything about gout will probably be aware that attacks don’t naturally last this long. Even the most severe attacks I’ve ever had have ended within about a week, with no immediate, new attack following. Yet my attacks over the past two months have nearly all been immediately followed by another one.

It turns out, there’s a reason for all this.

One of the drugs they put me on, Clopidogrel, is used to prevent clotting around my coronary stent, and I’m due to take it for another four months. However there are studies that indicate that it can cause gout in 1 to 2.5% of patients. That would appear to include me.

The medical staff at the hospital never warned me about that side effect, but, then, they didn’t tell me about the side effects of any of the drugs: I read about them in the medication information sheets from the Ministry of Health that are given to a patient whenever they start a new prescription (and they didn't mention gout, either). They were all aware that I have gout.

The thing that annoys me about this, though, isn’t that they didn’t warn me, since they typically don’t do that, it’s that it would never occur to them to warn me.

Too many medical professionals are locked within their blinkered world in which nothing exists that isn’t backed by overwhelming research. So, 1 to 2.5% of people getting gout from a drug would, to them, be totally insignificant—to the point of not existing at all. That’s easy for them to smugly believe: They’re not the ones having to deal with chronic pain, often severe, often crippling.

So, one of the drugs being used to keep me well longer-term is at the heart, so to speak, of the thing that’s keeping me from being able to fully recover. Bad as that is, the bigger problem is that there’s nothing I can take to treat the attack, and there’s no pain reliever I can take other than paracetamol. As I explained a week into this:
NSAIDS [non-steroidal anti-inflammatory drugs] like ibuprofen, which was part of my usual treatment for a gout attack, conflicts with my statin. Worse, anything else could cause bleeding, since I’m on blood thinners for six months or so. That means that paracetamol (also known as acetaminophen) is all I can take.
Because I can’t take NSAIDS, I have nothing to minimise or end the inflammation that’s part of a gout attack, and often the thing more than the pain that can be crippling. But the often severe pain is what makes this truly miserable, and it’s a pain that I effectively have no way to ease or relieve.

The other night, as I lay sleepless and in severe pain, I thought of an analogy to explain this state of affairs. Imagine someone handed you a water pistol, totally full, and said you’d have to use it to put out a fire. They open a door, and there you find a couple bits of crumbled paper burning in an ash tray. You aim and shoot the squirt gun at the fire, and you put it out. This is paracetamol treating a common headache.

Then, after refilling your squirt gun, you are taken to another door. They open it, and on the other side is a roaring bonfire. Even a squirt gun many times the size couldn’t possibly put out that fire, but all you have is the ordinary sized one you were given. The door behind you is closed and locked, and the only way forward is through that fire, but all you have is an ineffective squirt gun. You empty the squirt gun, but the fire roars on. This is what it’s like to use paracetamol on a severe gout attack: It doesn’t help at all, but it’s the only thing I can use.

I also came up with other analogies to help explain the pain: A mild attack is usually just some soreness, maybe a kind of dull ache, like maybe you’ve been standing on your feet way too long. But a severe attack is rather different: Imagine a razor-sharp dagger-type knife that’s been heated in a fire until it nearly starts to glow, then someone places the tip of that sharp, red-hot knife against the skin above a joint. Then, they push it in a millimetre or two, and stop. The searing pain eases, and then they push it in farther, and so on until that red-hot sharp blade is fully in your joint. Then, they move it every minute or two. That’s a severe gout attack, and sometimes even the slightest movement of the joint can be like you’ve pushed that knife into the joint yourself. Other times, the searing pain just shoots through the joint unexpectedly, as if an invisible force were pushing an invisible hot sharp blade.

I talked to my GP about this situation the last time I saw her, but she demurred, probably because one of the few solutions is steroids, which can have deadly (literally) side effects, and need to be closely monitored by a cardiologist. I’ve since found out—because I have to research answers to my own medical questions—that there are other blood thinners available for this purpose, ones that don’t have the same side effects, so maybe that’s an option. I don’t know, however, if they’re good enough for me or even available in New Zealand.

I was due to see the cardiologist for a follow-up sometime between four and six weeks, but they haven’t rung me yet. And, until last weekend, I really thought—hoped?—the gout was over.

So, on Monday I’ll ring and press them for an immediate appointment, or, failing that, a referral to a cardiologist so I can get this sorted. I have no alternative.

Well, I have several alternatives, actually: Four more months of chronic gout attacks, with often severe and crippling pain. Or, I could just stop the blood thinner and risk clots forming that could kill me. Or, I could take NSAIDS and risk a severe drug interaction. Or, they can work to fix this. I will be insisting on the latter, and I won’t be taking no for an answer, no matter what.

Despite those things to be considered, meaning, apart from the gout, I really am doing well. I’ve now lost 5.4kg (11.9 US pounds) since this adventure began, all from better eating—since it was only last week that I was even capable of walking (had I not been too busy with work; this past week my mother-in-law was here, so I was busy, and with my painful elbow, walking was the last thing on my mind). I generally feel good, apart from the usual general yuckiness that accompanies gout attacks (and paracetamol actually does help with that).

My greatest fear at the moment is that I’ll get another attack in my foot or ankle or knee sometime in the next couple weeks, because until my elbow fully recovers, I can’t put any weight on it, and that means I couldn’t use my crutches to get around. And all THAT would mean I’d be fully bedridden for days, up to a couple weeks.

Maybe I’ll have a bit of luck, and my worst fear won’t come true, or it’ll be in the opposite foot. After all, I did have about a week with no real gout symptoms (and that’s the irony of this: Another week and I could have started the allopurinol).

Mere recovery is now well and truly over, and I’m on to the business of becoming better—fitter, in other words. If I can get this gout under control, I can get on with moving forward—moving being the key word there.

Still, eight weeks later, I am doing well. All things considered.


rogerogreen said...

I did not know you could get gout in the elbow - it would not have occurred to me. Literally, what a pain.

rogerogreen said...

How do you know you have gout? (I mean, other than having a physician say so)

Arthur Schenck (AmeriNZ) said...

I just realised I never replied to this (I was alerted by one of the "Also on AmeriNZ Blog" comment links below ↓ ).

Yes, you can gout in an elbow, and any other joint. I've heard of people getting attacks (very rarely) somewhere in their spine, but I don't know where—I presume it's where it joins the hips or the head, maybe. Be that as it may, it's most common in the foot (big toe being the most common of all), but it can be in the knee, finger joints, elbow, etc., all places where I've had attacks.

Arthur Schenck (AmeriNZ) said...

The only OFFICIAL way to get a diagnosis is for a doctor to take a sample of the fluid in a join during an attack—and when an attack is going on, the LAST thing anyone would want is a needle stuck in their joint! They can also measure the uric acid levels in the blood, but apparently the medical establishment doesn't consider this reliable. Perhaps they just enjoy sticking needles in the extremely painful joints of people…

In the real world, among doctors who aren't sadists, the main way they tell is, apart from the pain, the skin above the joint is usually hot to the touch, and often red and shiny (due to the swelling and inflammation of the attack).

The pain itself can be so excruciating that the weight of a sheet can be unbearably painful. It hurts too much to put shoes on, and walking may even be impossible (depending on which joint was affected and how severely).

A full-on attack has very specific pain—it's almost always possible to point to the exact spot that's painful—and it's often excruciating. However, it can also sometimes be milder, like if you hit your foot against something, such as badly stubbed a toe, whacked your knee hard against a table leg, that sort of thing.

But gout is a form of rheumatoid arthritis, and just calling it that conjures up for me images of pain stronger than mere soreness.