Friday, December 31, 2010

Intro, Part III

So after doing my own research, and my mom asking all her friends (the neighbor works at a hospital) I get the name of a guy who is "the best in town".  I set up an appointment, and my wife and I go in.

He seems like a nice down to earth guy, a little spastic, but he's a doctor, so I guess that's OK.  He takes a look at what I'm on and says:  "Looks good to me, let's keep it going like that".  Hmmmmm..... "Well," I tell him, "I've been on this for a year and nothing has changed by my pant size." 

The drugs had taken their effect on me.  Weight gain, thin hair.  I have blond, fine hair as it is so when my hair thins its a big deal.  Plus I'd ballooned to 230 lbs (I'm 5'9").  I'd been on the stack for a year and thrown my overall health out the window to combat the RA.  I was hungry all the time and my diet had suffered.  During that first year, my wife gave birth to our first daughter and I had put on the sympathy pounds.  The Methotrexate gave me a malaise feeling all the time.  I ate and ate, and worked and worked (gotta have insurance to pay for the Enbrel) and took my meds.  I got bigger and worse off.  My mobility had suffered greatly.  I could barely lift my left arm above the shoulder, and my right wrist was killing me after a day at the office building websites.  If I did get off track on my meds, I could barely pull a shirt over my left arm and had problems buttoning my shirt.  This was waaaay not cool.  I was spending all my time trying to pre-fill my "needs" in life to make my body comfortable enough to fight the RA.  This went on for another year.  It totally backfired.

After ballooning to 50 lbs over my regular weight, taking my meds for almost 2 years, my symptoms were no better than they were before and my entire body felt like crap.  I was carrying too much weight and that was stressing out my other joints and my back.  Every time I got a pain I thought the RA was spreading.  It was a vicious cycle. 

Cut to the next RA doc visit.  Time for X-Rays of my joints to compare with what I had done at the hospital.  The verdict?  Good and bad.  The wrist looked OK, even though it was still inflamed.  The shoulder, however, was deteriorating.  The sinovium, the inner lining of the joint, inside the capsule, was wearing away and now I was dangerously close to being "bone on bone".  The new RA doc was visibly upset about the issue, it almost felt like he was taking it personally.  He tells me my joint is slowly grinding to a halt and that the "disease" had started to take its toll.  This was not good news.  Even worse news....he said not to change my meds.  Really?!?  So let me get this straight.  My shoulder is deteriorating, but you aren't going to do anything about it?  Can't we do some kind of scope to clear out scar tissue or something?  Nope.  Just keep the status quo.  Grin and bear it. 

I won't settle for that.

I started doing my own research along with some soul searching.  Basically everything I read said the same thing the doc said.  Keep it on and "manage" the RA.  I don't want to manage it, I want it to go away.  Then on my next visit, I was reading a Time Magazine article in the waiting room called "The dangers of Inflammation" or something like that.  It was more or less about how inflammation causes heart attacks and what people could do to reduce inflammation.  This sounded familiar.  I kept on reading.  It said that diet,  exercise and some environmental factors were key to reducing inflammation.  This piqued my interest.  What kind of diet reduced inflammation?  What were these "environmental" factors that contributed to RA?  After another ho-hum, what's your pain level,  keep on keepin' on visit to the RA doc, I decided to delve more deeply into this inflammatory issue.

One of the most profound statements I found went something like this:  "Inflammation can be a result of the body fighting off too much of what it needs to function properly."

Apparently, too much of a good OR bad thing is a bad thing.

I digressed to a concept that I had heard many times over.  Minimum Effective Dose.  (side note, its funny, but author Timothy Ferriss details this exact concept in his new book 'The Four Hour Body', where the Mininmm Effective Dose is the golden zone).  Too much of a good thing is bad. The thought I had was that the meds I was taking were overkill, they were having minimal success and were still causing unwanted side effects, especially weight gain, which I blamed for my joints getting worse.

Mind you, I am not a doctor, I'm a Web Developer.  However, I started to play around with my meds, which at the time were:

1 enbrel shot per week
8 2.5mg Methotrexate Tabs once weekly
2 OTC Folic Acid tabs daily
10mg PredniSONE daily
150mg Diclofenac Potassium daily.

First I dropped the Diclofenac down to 75mg daily.  This was the anti-inflammatory of the bunch.  I decided to mess with this first since it wasn't a DMARD (Disease Modifier, a la Enbrel and Metho).  I quickly realized that I could get by with 75mg per day.  OK.  That works.  Second on the list, PredniSONE.  From my research, this seemed to be responsible for my overactive appetite and also my weight gain and water retention.  I cut it in half to 5mg daily.  I stayed with this regimen for one month.

The results were negligible.  I was saving cash on my meds, reducing my Minimum Effective Dose, and having no drop off in treatment results.  Interesting.  I brought these findings to my RA doc.  He gave me a perplexed look, told me I need to trust him, that he knows what he's doing and that he can't guarantee my RA "management" if I don't follow his direction explicitly.  He emphatically advised me that the PredniSONE (steroids) were responsible for keeping my joint from deteriorating and that I needed the 10mg daily.  Well, I got news for you fella, the damage is already there, and it doesn't seem to get worse.  I'm doing it on my own and its working.  I felt so empowered.  I left with both some personal pride in that I showed the MD up and also some sadness in that I felt he was wasting my time.  I told him I was going to keep this regimen for 2 more months, and we'd come in and get another X-Ray on the shoulder to determine whether the damage was accelerating.  With the disapproval of my RA doc,  I left and continued my experiment.  After 2 more months, the results were the same.  The pain wasn't worse, but it wasn't better.  But the X-Ray was the kicker.  My joint damage had NOT progressed a single bit.  I realize that 3 months is a small window, but hey, its still a window and I was encouraged by my progress...I was also discouraged with my RA doc.

To be continued.

4 comments:

rheumablog said...

Welcome to the RA blogosphere, Matt. I'm really sorry you've got RA, but if it helps at all, you're not alone. While I was not an athlete when I first began having those perplexing and painful RA symptoms, your story had me nodding my head. My RA also presented non-symetrically, though it affected more joints, randomly, that yours did. Mine would flare briefly (three or four days, then ease) in one wrist, then a knee, then my foot, then a shoulder, then an ankle ... and each time, inexplicably. I was 31. It was nuts.

All of us have a slightly different story to tell about our RA, with the only commonalities being pain (sometimes severe) and frequent disablement. Some of us have joint deformities, others don't (I don't, thank goodness, though it's been more than 20 years since that initial diagnosis).

The facts are that the docs don't know why we get RA, that there are only a few drugs that work (and those work differently for each individual) and that RA is, so far, incurable. So we all live our lives as fully as we can, and with as much hope as we can muster. The goal, of course, is remission. I've had that once -- an extended remission that lasted about six years. It was wonderful. But the RA did return.

I wish you the best as you fight your battle against this really tough disease. And I encourage you to check out the other RA blogs online (many of which are listed on RA Guy's excellent blog, which is where I found your new blog featured today). Having support and encouragement from those who're fighting the same battle is a real shot in the arm, and it can really help you get through the tough days. And you'll learn a lot.

I'm looking forward to the next installment of your story. Here's wishing you a happy, safe, and hopefully less painful 2011.
-Wren

Seeking Solace said...

Hey Matt!!!

I have RA too, going on 11 yeas. I was diagnosed at 30 after doctors used me as a human pin cushion. I was OK on Plaquenil, NSAIDs and the occasional steroid dose pack for eight years until things went crazy. I started the MTX pills, lost my hair and all the usual stuff. I gave up practicing law to become a college professor.

My husband and I moved from the cold of the north to the south to help in my battling the illness. Started the MTX shots in 2009 and added Embrel in November. (Nasty little shot, no?). And, let's not forget the folic acid and the Effexor to battle the depression that comes with having a chronic illness.

Things have been better for me. I still get flares, but they are a little more manageable. It is like the previous posted said, RA is different for everyone. My MIL was diagnosed this year and my FIL still can't understand why she is not as "sick" as I am. Sigh.

I wish you the best in your journey.

Cathy said...

I love that you are experimenting on your own!!!! I had to laugh when I got to the part about Tim Ferriss because I just heard him talk as a guest on Robb Wolf's podcast. Interesting guy!

I too have experimented a lot with RA and it is empowering to take back some of the control. I am currently on meds plus diet and a few supplements and doing really well. Good luck. I am looking forward to hearin more of your journey.

BTW: Heard about you from RA Guy's blog.

tharr said...

Hey Matt, nice to meet another guy in the RA blogosphere. I just ran across your blog at RA Guys. Sorry we had to meet under these conditions. I have put on about 60 pounds since being diagnosed and starting treatments. I'm glad that you are doing research on your own and experimenting with your drugs, even if your doc doesn't approve. I had a bad doc to start off with but after a year I found a good rheumatologist that I am still hooked up with. Good luck, I'll be back.