Rheumatoid arthritis treatments 101

One of the things you learn quickly after you have been diagnosed with rheumatoid arthritis, if you are choosing to go the western medicine route, is what all the drug lingo means.  When I first started reading all the books I'd gotten, I had no idea what an NSAID was, even though I was taking one. Now, keeping in mind that I am not a doctor, here's a basic run down on some common drugs and treatments from my perspective.

Class A: NSAID's. 
NSAID's are non-steroidal anti-inflammatory drugs, and chances are you have taken one.  This category includes aspirin, ibuprofen and naproxen sodium (aka Aleve), among others. Back in the old days of RA treatment, most people were put on one of these, often in large quantities, to help treat the inflammation and pain associated with rheumatoid arthritis.  It was thought that most of the damage to joints didn't happen until later stages of the disease.  Now, however, it's been shown that joint damage often happens in the first, earliest stages and onset of the disease, so that is why they tend to treat people much more aggressively right off the bat.  NSAID's really just treat the symptoms of the disease anyway, and not the actual disease, and since RA is progressive in most people, meaning it gets worse and worse as it goes on, that's important to understand .

Plus, for many people, taking tons of NSAID's will rip up your stomach in ways that are not pleasant at all, so then not only do you have RA, but you also have a bum stomach.  Who wants that? My first doctor started me out on naproxen when he was running tests on me, and I continued on it after my first rheumatologist visit. But by mid-December, about three months after I'd been taking it, there was, shall we say, evidence, that it was starting to make my stomach very unhappy.  (If you need a clearer idea of what I mean by evidence, go read the back of an Aleve bottle, and you'll get a better idea.)  Needless to say, I stopped taking that right then and there.

Class B: DMARD's
DMARD's are disease-modifying, anti-rheumatic drugs, which, as I understand it, means that these drugs actually interact with your immune system in a way that modifies (hence the name) it and helps to halt the progression and activity of RA. They include the dreaded (well, for me- it works miracles on many) methotrexate as well as injectable gold, oral gold, sulfasalazine, and plaquenil (and many others).  My rheumatologist put me on plaquenil right after my first visit, and I've been on it for about eight months.

One thing about DMARD's is that many of them can take as long as six months to kick in, which, when you are in excruciating pain that keeps you from sleeping, moving and everything else, and so fatigued that you would just prefer to stay in bed for, maybe, ever, six months is wayyy toooo loooong.  Many DMARD's have some pretty crazy and serious side effects, too, so they aren't something to play around with.

Luckily for me, the plaquenil hasn't had any side effects that I'm aware of, so that's great.  Some people get rashes or become incredibly sensitive to sunlight.  I am already incredibly sensitive to sunlight, and have been plastering my skin with SPF 8000 for many years, so this was no biggie for me. It can, apparently, in very rare instances, interfere with or detach your retina, so if you go on it, you'll have to get a majillion tests by an ophthalmologist to make sure this doesn't happen (though my ophthalmologist told me I'd have to take gallons of it every day in order for this to actually happen...).  It was originally used as an anti-malarial drug, which I thought was a pretty cool bonus since I like to travel. Imagine my disappointment when I found out that I'm not taking a high enough dosage to actually protect me from malaria, which is annoying since I'm going to Peru this summer and have to get other malaria pills (can't one pill just do for all, dammit?) for that trip.

For many though, DMARD's just aren't enough, which leads to:

Class C: BRM's
Biologic Response Modifiers.  These are the crazy, wacky, bizarr-o drugs that have come out in the last decade or thereabouts, and have revolutionized the way that RA, and other arthritic diseases, are treated.  These suckers basically stop your overactive immune system in its tracks by binding to all the extra inflammatory things (particles? proteins?) in your body and taking them out of commission so that they can't keep causing the inflammation around all of your joints.

I am on one, and I have to say, as quickly as my life changed when the RA began, it changed just as quickly again when I started on enbrel back in January.  Most BRM's have to be injected or given in infusions, and have to be kept cold, so you could also refer to them as HMD's (high-maintenance drugs). 

As thankful as I am and happy to be on enbrel, there are some pretty serious considerations to think about when it comes to BRM's.  They work by suppressing your body's immune response, so that means that it's easier for you to get sick, and once you get sick, it's harder for you to shake it off, and an innocent cold or small fever could turn into something more serious, so you have to be vigilant about washing hands and doing what you can to prevent catching anything.  I already got flu shots before this, but I'll definitely be getting them from now on.

Some of the side effects reported for enbrel and other biologics, though rarely, include multiple sclerosis-like symptoms, lupus-like symptoms, and some people (not necessarily doctors) posit that since it weakens your body's immune response, it may increase your chances of developing certain cancers like lymphoma, because your body won't recognize that those cancerous cells don't belong to you, which would suck.

In a way, it's a bit of a catch 22- damned if you do, damned if you don't. Some people decide to chuck all of these medicines out the window and approach treating their condition with diet, exercise, and alternative medicines like Chinese herbs, acupuncture, massage and ayurveda.  I am intrigued by all of these. I have practiced and taught yoga for years and deeply believe in its ability to aid in the healing process, and the nervous system is incredibly connected to the immune system, so that certainly plays a big part in any autoimmune disorder.  Studies have shown that certain supplements, like fish oil, can also impact RA positively. (Note to self- get on them.)

Maybe one day I'll be able to control my RA without the help of serious drugs, which I would love, but I was in way too much pain, was crazy-delirious with fatigue and sleeplessness and had already watched this nasty disease take out one of my toe joints in about three months time. (It is permanently damaged, folks, and persists in popping in and out of place all the time because the ligaments have been stretched out for good.  I guess it's a good party trick, but it's really gross, and it still causes a lot of pain.)   

Frankly, I'm not willing to risk letting RA take out any more of my joints if I can stop it, so for now, I'm readily embracing all the pill-popping and shooting up I need to do.  I also practice yoga, particularly restorative yoga, plan to begin acupuncture once I'm done with physical therapy (I can only do so much at once) and have begun to make some changes in my diet (though clearly giving up alcohol is not one of them- what can I say?). I will definitely be reporting back on these other therapies as I try them.

Ok. Class is over.

Comments

[Catherine]

Coupla things to keep in mind.

re: flu shots, you probably should NOT get one -- ask your doctor. The immuno-suppressed usually are not allowed to.

re: fish oil -- buy pills, not the liquid. Trust me. It smells. Like rotting fish. Mmmm...I LOVED kissing Jeff right after he took his!!!

Not.

[Jennifer]

Good post covering the various treatments out there. I would suggest asking your doctor about trying different NSAIDs that might be a little easier on your tummy, since reducing inflammation will help a LOT with pain. Also a big YES on fish oil, I think it has made a big difference for me, and it has other health benefits too. Look for 'odorless' or 'enteric coated' to avoid fishy burps. And check with your RD about the flu shot; mine insisted I get one this year, since the risk of actually having the flu while your immune system is suppressed may be greater than the risk of the flu shot itself.

[sara]

Jennifer and Catherine-thanks for tips on which fish oils to buy-i definitely want to avoid fishy burps. that sounds putrid.

in terms of flu shots, i did discuss with my Rheumatologist, and they are highly recommended, basically required, for the immuno-supressed. Catherine-i'm curious where you heard the opposite?

[Connie]

Great info on various treatments for RA. I'm on Humira. I can have a flu shot even though I'm on other immune suppressant meds too. My pain levels have decreased greatly since starting Humira. When I'm sick and can't take it, I want to scream!

[Sara]

Hi Connie-
I know what you mean. The fatigue is also really difficult for me, and I would scream if I had the energy. I think Humira and Enbrel are very similar, but Humira is derived from Human dna, right? I'm glad it's working for you.

[Liz]

Hi,
I've been reading your blog regularly and am really enjoying it. I work with CreakyJoints, a nonprofit online community dedicated to helping people with arthritis live their lives to the fullest. Check us out at www.creakyjoints.org. We have produced a 12-minute video called “Another Hope: RA Infusion Therapy,” which contains introductory, non-brand specific information about infusion therapy, how it works, and its benefits. You can watch it or download it for free on our site. We are trying to get the word out about this resource, and given your latest post about the different kinds of RA treatments, I think this would be relevant for you and your readers. Would you be willing to mention it in a future post? Please email me for more details and thanks in advance for your consideration.