The shitstorm that is rheumatoid arthritis

(DISCLAIMER – If you are an anti-vax wacko who wants to try and sell the benefits of ‘clean living’ and ‘removing toxins’, please fuck off. Do not comment. Your comment will not be approved. It will be ignored. It will be trashed. I’m not interested in what your Googling told you, or your conspiracy theories about pharmaceutical companies, or the fake concern for my health in order to push your ridiculous unfounded opinion that has absolutely no basis in fact.

Again – please fuck right off. You are not welcome here. Take your lunatic bullshit elsewhere. Here, we prefer actual SCIENCE!)


Well, it’s been a fun couple of months or so, medically speaking.

Actually no. It’s been the opposite of fun. It’s been pretty bloody awful.

As the title says, this is all about the shitstorm that is rheumatoid arthritis. For those that don’t know what that is, rheumatoid arthritis is pretty much your body attacking your joints because it feels like it. Or, as Wikipedia defines it:

Rheumatoid arthritis (RA) is a long-lasting autoimmune disorder that primarily affects joints. It typically results in warm, swollen, and painful joints. Pain and stiffness often worsen following rest.”

Summed up – it’s pretty shit. And I’ve got it.

To give you a bit of background of how this all came about – a few months ago, I had a really nasty pain in my right wrist. I couldn’t move it, could barely type and move my mouse (which, for someone in my line of work, is torture) and it was severely aggravated and red and swollen. I thought nothing much of it – I’d been gaming heavily, as ‘World of Warcraft: Legion’ was going to be coming out and I’d been gaming for at least 4-5 hours a night leading up to it, so I thought I’d just been using it too much.

A day or so later, and everything was fine. That should’ve been my first clue.

A week later, my left knee went. Now I am not the most active person in the world. Far from it. So I *know* I’d done nothing to cause this injury. It worried me – not least because I literally couldn’t walk on it for at least two days. So I thought I’d go off to the doctor and see if they could work out what was going on. Got a few requests for some blood tests and went off and got them done. Between getting that test and seeing my doctor, my left wrist had the same issue. Now I was *sure* there was a problem. So I went back to my GP for the results that no one really wants to hear:

“There’s a 95% chance, based on your blood tests and hereditary markers, that you have rheumatoid arthritis.”

For those interested, there are now two tests that can be done to test for RA. Previously, you were just tested for RF (rheumatoid factor) but there’s now an extra test for something called anti-CCP. Both of mine were positive…which is why my doc was pretty sure that RA was the right diagnosis.

Oh goody.

Now, before you go “But arthritis, isn’t that an old persons disease?!” (like I did) let me enlighten you. RA is different – it’s similar to irritable bowel syndrome, psoriasis, & coeliac disease. It’s an autoimmune response – your body is reacting to what it perceives as a threat and is doing what it thinks is best…which just happens to be the wrong thing because your body is a little bit broken. I was told by my doctors that most people who are diagnosed with RA are between the ages of 20 & 40 these days. That’s not old. That’s pretty darn young. In fact, most have it happen around the same ago I am – early-to-mid thirties.

Weirdly, mine doesn’t ‘present’ the way RA normally does. RA will normally present symmetrically – if one joint is affected, the opposing joint should also be affected e.g. both wrists, both knees etc. Mine doesn’t do that – so I have what’s known as asymmetrical RA. I just get the full affect in a single joint. However, this isn’t all that surprising, as it turns out I have a family member (won’t name names!) who also has the same presentation. Yay for genetics! Said family member has also told me to look forward to having it affect some interesting joints such as my jaw and my sternum…

So, this wasn’t the most wonderful thing in the world to hear. While it wasn’t 100%, it was pretty damn close. So off to a specialist I was sent. I was actually really lucky – my specialist appointment happened within two weeks or so of all of this happening, which is apparently really rare. The fact that I’m young(ish) and they can try and get ahead of this now before I become a drain on the healthcare system is probably what spurred them on.

Off I trot to see a specialist rheumatologist, who ums and ahs over the responses I give to certain questions, pokes and prods my joints (including my right wrist and middle knuckle which had flared up a few days prior to this visit) and delivers the final news:

“Sadly yes, our diagnosis is that you have rheumatoid arthritis.”

Well…shit.

So with that announcement came a few new medications. Well…alright… *a lot* of medications.

imag1038
(clear container – morning pills; blue lid – evening pills)

I’ve never taken so many tablets before in my life and I get the great joy and privilege of taking these (most likely) for the rest of my life. Yay… -.- Side note – travelling with them was fun – didn’t realise how many I had to take until you have to portion them out in one of those little “Days of the week” containers. It’s actually a bit daunting.

Along with my new medications comes a whole new host of side-effects…some of which are balanced out by taking even more medication! Here are a few of the best ones:

  • I’m not allowed to drink much alcohol…at all…ever. That’s not to say I can’t have a glass of wine with dinner, or a really nice cocktail. I just can’t have more than 1 or 2 and I can only do that very infrequently. One of the drugs I’m on does weird things to my liver and drinking will just make that worse. It’s not a massive issue for me – it’s not like I drank much to begin with…unless you count tea. And tea doesn’t count, thankfully.
  • I can’t go out in the sun. Or I can, but I have to be completely covered, from head to toe. The drugs I’m on are DMARD’s but they also have the added benefit of being similar to immunosuppressants (because what you’re trying to do is stop your immune system from being stupid). So one of the cool side-effects is that going in the sun is *baaaaad* because I’m at a higher risk of getting skin cancer. Also means that anytime I’m going to be exposed to sunlight I have to be covered in sunscreen – so guess what’s become part of my daily routine? Spraying myself with all-over sunscreen every single morning. I’m now also taking massive amounts of vitamin D because I can’t get it the good old fashioned way! (Get your mind out of the gutter…)
  • I have absolutely no appetite. None. I love food as much as the next slightly-chunkier-and-not-so-skinny person. I LOVE food…I just have absolutely no drive to want to eat it. Which really sucks, because I have to take my new collection of pills, capsules and caplets with food. So because of the medication I’m taking I don’t want to eat, but I *have* to eat to be able to take the medication. Makes so much sense. Tied to this is constant nausea – which is why some of the tablets I take are designed to stop that (seriously, thank the gods for ginger).
  • I drink. Constantly. No, not *that* kind of drinking. I drink so much water now, it’s not funny. This is a good thing, because of my liver and kidneys, but also a bad thing. I have never had to visit the bathroom this much per day in my entire life.
  • Headaches and dizziness are now considered “normal”. I can pretty much count on having some kind of headache at one point or another during the day. Standing up and sitting down cause me to get dizzy, so don’t be surprised if you see me reaching out to steady myself regularly.
  • I have to get blood tests – All. The. Time. I look like a pin cushion…or a very dodgy person who uses needles. It’s for a good cause though – they need to make sure that the medications aren’t doing funky things to other healthy parts of me. Downside – I continually have bruises on my arms from the number of times they have to take my blood. At least we’re now switching arms so I can have matching bruises on both sides.

So those are just a few of the not cool things that I’ve discovered, and I’ve only been on this stuff for just over 8 weeks. There are many more weeks…months…years…to come. And that’s fine. At least there is some kind of treatment. I was a big believer in Spoon Theory before (especially in regards to mental illness) but now that I have this “blergh” to deal with, it makes even more sense.

On the bright side – I haven’t had a major flare up since I started the tablets. A few minor ones, but nothing that was completely debilitating. This could be a placebo affect from taking all the tablets…or it could mean they’re actually working. Either way, I don’t really care because it means less pain.

So, to sum up, I guess this post has two intentions:

To let you all know that there’s some nastiness going on in my life at the moment, which is taking a fair bit of my attention and I’m still coming to terms with dealing with it. It’s not the greatest thing in the world and the side-effects of all the drugs (not to mention having to TAKE all the drugs) can be pretty draining. Also means I’m not the cheeriest person in the world, or that keen to go out and do social things…because who wants to be social when they’re feeling broken.

And…

That people who have RA, or other autoimmune disorders/diseases aren’t alone. There are so many of us. You don’t need to suffer in silence. There are things you can do that can make your life better. There are people you can speak to & there are others out there who will understand what you’re going through. I’m just one of them.

UPDATE (March 2017)
I’m now off one of my drugs (yay!) mainly because my RA seems to have settled quite nicely with just the one and also because the drug is considered a Class C (so baaaaaaad for my current status as 3D human printer!). However, pregnancy is making all sorts of weird stuff happen, so I’ve had a few flares (holy BEJEBUS does it hurt when it goes into your jaw!) but nothing disgustingly unmanageable.

My Rheumatologist is happy with how things are going and doesn’t want to see me until October 2017! Lifestyle changes have been interesting…but we’re slowly getting used to them 🙂

UPDATE (May 2017)
Well, I’m now back *on* the drugs. In fact, I’m on even *MORE* drugs than I was before. I am one of the unlucky ones – while I did seem to briefly go into remission during the early stages of my pregnancy, the last month or so has been utter hell and it just hasn’t stopped. In the last 10 days alone, I’ve had my right wrist, right knee, left TMJ (jaw), left ring-finger knuckle and right pointer-finger knuckle all flare. Badly. It has not been fun. To give you some idea of fun, I actually went off to the ER with the pain in my wrist (because I also have pregnancy-induced carpal tunnel) threatening to cut my hand off to stop the pain, it was literally that bad.

So – to try and fix that, I’m back on all of my meds again as well as taking prednisone (steroids…wooo -.-) and a crapload more vitamins and supplements. On a good day, my pill count is about 22. On a bad day? As high as 30. Fingers and toes crossed (if they’re not flaring :P) I can get off most of this once tiny hooman is here.

One thought on “The shitstorm that is rheumatoid arthritis

  1. Andrew Rowland

    I want to give my support to you, as well as I can. I have psoriasis that moved to psoriatic arthritis two years ago. I am taking Enbrel for it in a once weekly injection. My joints don’t hurt, or at least hurt as often and my skin has cleared up. I went from 10% occluded to 2-3% The only one refusing to budge being the one on my forehead I’ve nicknamed “Gorbachev’s Birthmark”

    I found this post through your sysadmin ethics post.

    Reply

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