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.