Tuesday, November 05, 2013

Running from Rheumatoid Arthritis

I thought I’d take this occasion to post about something that someone somewhere might actually get some use from during a Google search.  According to my history, most searchers usually arrive here through an unsavory combination of search words like “anal” and “leakage” and “Charlie Sheen”.  There is benefit to knowing about all three of those things but perhaps this post will delve into a slightly less off-putting topic.

I am a runner.  I’ve also been diagnosed with Rheumatoid Arthritis (RA).  So far, I haven’t been diagnosed with Handsomitis, Charmingectomy, or Modest Egoism.  In fact, unless your computer screen is 30 inches wide (and widescreen), you probably can’t keep my ego within frame.  Buy a larger monitor to view the whole thing.

The nice thing about the internet – and a blog – is that it doesn’t forget.  That’s also the worst thing.  But, in this case, we can all look back at the innocent little post I did, pre-diagnosis, where I complain about stiff joints and feeling old.*  Hey, whaddya know, I had RA and didn’t know it at the time!  How sweet and naïve.

Here’s the thing about RA for those not in the know: it’s an autoimmune disease; it’s incurable and, usually, progressively gets worse; it’s not as dire as some cancers but more ominous than, say, Handsomitis.**  For me, it started with sore, swollen joints on the outside of my feet every morning, then hips (which made it a bit difficult to sleep), then neck, finally, ending in the hands.  By the time it reached the hands, the foot, hip, and neck pain had mainly gone away, thankfully.  It took up permanent residence in the middle two fingers of both hands.  At the time, I thought this was just some sort of karmic retribution for all the flipping off I’d done (and was yet to do).  But, joke was on RA, as it only served to make my middle finger knuckles slightly larger and thus more visible from a greater distance.  Duh, winning! (We are still doing this right? It’s been awhile since I’ve posted.)

The long term outlook can be anywhere from nuisance joint pain to complete joint failure/replacement/immobility/beep-beep-beep motorized cart.  In some cases, it can progress into the lungs and heart wall lining and, well, not good.

The first symptoms appeared in December 2009.  After several months of believing the swelling was due to running or soccer or weight lifting soreness, etc., Mrs. Nitmos finally convinced me to head into the doctor’s office early summer 2010.***  Ultimately diagnosed with RA – which I told you all about here – I ended up on two medications.  First, a weekly eight pill regimen of methotrexate, which can best be described as tasting like Sweet-Tarts – if Sweet-Tarts tasted like death.  Methotrexate is RA's gateway drug.  Second, twice monthly, I would give myself an injection of Humira (I’m sure you’ve seen the non-stop ads on TV) into the upper thigh.  Combined, the two medications cost the insurance company a princely sum of around $2000 monthly.  Fortunately, I only paid around $100 monthly due to my decent work health insurance but I’ve always wondered how anyone without insurance (or with poor insurance coverage) manages.

And, believe me, I have my own insurance company horror stories as they tried frantically to force me onto other, cheaper medications so their bottom line would look better.  For profit insurance, hooray!  Several HOURS spent on the phone tussling with these soulless profiteers…but that’s a story for another blog…

Methotrexate is a baseline drug almost all RA patients take.   Then, you end up with a second drug and that could be Humira or Enbrel or Trexall or dozens of others.  If one doesn’t work, you go on to the other.  Fortunately, my doctor was always optimistic and confident that there is a drug out there that matches a person. For me, the first try was successful.  Humira (along with meth, as I lovingly called it) worked right off.  Within a few weeks, my symptoms were under control.  Within a few months, my joint pain had vanished.

And since this is a running blog, I should note that I never stopped running.  Again, my doctor is the best.  He totally contradicted the layperson’s advice (which I heard, repeatedly) that I should stop running “because you’ll just damage your joints further”.  As he said, the worst thing an RA patient can do is STOP exercising.  This, in fact, IS what many RA patients do which only serves to accelerate an AUTO-IMMUNE disease that, already, is compromising your ability to fight it.  The best defense, he said, is to take your medication, eat healthy, don’t gain a lot of weight (which many do as they stop moving and become immobile thus creating even MORE stress on the joints), and keep exercising.  The qualifier here, of course, is that if it hurts don’t do it.  Find a different exercise.  Fortunately, the pain in my feet went away. So, I kept running.  I kept fit.  In fact, outside of pill-popping and drug-injecting, this guy here felt completely normal or, at least, like a typical Wall Street trader hiding a secret meth addiction.

Early on, there were times where a run would totally wipe me out for the rest of the day.  There was some guilt too because the kids would want to kick a soccer ball around in the yard and, man, I was just beat and had to decline – something I normally never do.  But the thought to stop running never even occurred to me.  In fact, I considered it a key part of fighting RA.  Physically, I wasn’t 100% sure it was the right thing to do but MENTALLY it was exactly what I needed.

Drug-taking began in August 2010.  With no symptoms recurring, the doctor agreed to let me wean off the drugs starting August 2012.  First, we stepped down off the Death-Tarts.  By the time I was sitting in a New York City hotel room not running the 2012 NYC Marathon, I was off meth.  In February this year, I stopped the Humira injections (just in time before my insurance company decided to start charging me an exorbitant sum for it because THEY don’t have a deal with this manufacturer but DO have a deal with another drug manufacturer and were forcing me to an unknown medication….again, a story for another blog…)

It’s been 9 months and, so far, so good.  No joint pain.  No swelling.  As of now, I’m one of the lucky ones as my doctor tells me less than 5% of patients can go off medications.  Usually, pill-popping, injecting is a life-long thing.  He thinks it was due to my young(ish) age, being fit, and catching the disease EARLY – hitting it hard with heavy medication (which, again, the insurance company could not understand, you know,” costly”…but that’s a story for another blog…) - before the body adjusted to having it around.

There’s always the chance that the symptoms may recur at any time.  But, for now, there is only one conclusion you should all take from this somewhat somber tale:  I beat an incurable disease!  I healed myself!  Yeah, that’s right, Nitmos is just THAT awesome.

Adjust your monitor for continued viewing.

Happy trails.

*Also, note one of the commenters cleverly advising me to have it checked out in a follow-up post I did complaining about knuckle pain in March 2010.
**Not to be confused with Hansonitis that we all had a case of in the 90’s, Mmmm-kay?
***If you experience similar symptoms, the thing any RA doc will tell you is that the quicker you can get treatment the better.  RA can be stopped in its tracks with modern medicine before joint damage takes place but you must ACT within the first 6-8 months from the onset of symptoms.


Xenia said...

You're like Jesus. Only, you know, not.

My mom has R.A. It was very bad in her hands. She's not fond of taking prescription medications though, so she tried a wheat-less diet and it worked. No more swelling or pain. A potential option for you should the pain reoccur.

Jamoosh said...

I would assume a hearty congratulations are in order but perhaps a simple congratulations won't put a dent in your ego.

Thusly I deem you "Lord of RA," which may or may not be a character in a bad 80's Science Fiction Movie.

Viper said...

The big question is: Are you still cracking your knuckles? Cheers to laying off the pills!

Running Through Phoenix said...

No drugs, great, but how much of that Shandy did you have to drink this summer? I'll read your response on my ipad screen......

RA Trucker said...

Enjoyed your post, it tagged on my 'rheumatoid arthritis' google alerts. I have RA also, but alas, not so fortunate as you. My symptoms started in the summer of '09. Diagnosed in April of 2010, started mtx that day. By May I had to use a cane and by June I was in a wheelchair. Started Humira early July and it was indeed a miracle for a year. Then I switched to Enbrel and added sulfasalazine. Last December the Enbrel started to fail & I started Actemra infusions. I was able to get off the meth and ssz.

I range between remission and low disease activity (getting some joint injections tomorrow actually). Of course my remission is 'drug induced'. You are very lucky- I think if my RA had been caught earlier, even by a couple of months, I might have less aggressive disease. If it had been later...my life as an upright human being may have been smited.

For those that said "why not try diet first?" e.g. gluten free "what do you have to lose?" My answer is- EVERYTHING- the time lost not treating this very serious disease early on can a very small window of opportunity lost.

Thank you for your most excellent post.

Jill said...

Happy News!

TCHusker - Nate said...

Glad to see you posting again. Somehow it took me almost two months to notice you were updating. Good thing I'm on winter break so I can catch up. Happy New Year and blessings on keeping that RA in its place (being trampled by your running shoes).

panaster manster said...

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sciatica || osteoarthritis || Low back pain

Carolyn said...

I just stumbled on your blog and I'm glad this one of the first posts I saw! It's rare to come across other people who have RA, and I haven't met another runner who does, so it is very encouraging to read about your experience.

I was diagnosed with RA when I was 20, and the first thing I asked my doctor was whether I would be able to run again. I was so scared and, honestly, running is one of the things that's helped keep my anxiety about RA in check. I take meth (wooooooo) and have had a few flareups BUT I'm currently training for my first marathon! Anyway, thank you for sharing your diagnosis. Fingers crossed you can stay off the drugs!