Anthony’s Notebook

Please read my first and second posts regarding my ordeal with rheumatoid arthritis. These previous posts deal with my initial encounter with the disease and my first few doctor's visits. I have stated that my timeline is very fuzzy. But as I move closer to the present, it becomes easier to remember treatments and their physical impact on my symptoms. I really hope these posts help someone who is newly diagnosed with the disease. I found so many resources on the web during the initial few months after officially being diagnosed that it became difficult to find more personal accounts of the disease and how they are dealing with it. I guess that I was looking for a blog-style resource where I could read a first-person narrative of someone dealing with it. I was lucky enough to get to know two people who have similar problems. A co-worker's sister-in-law has RA and she made herself available as a resource if needed. This was a big plus for me because she had been living with the disease since her teens and had seemingly already gone through all of the uncertainty and was being treated. Another co-worker's brother, whom I will call "Buddy," suffers from Crohn's Disease. Crohn's Disease is also an autoimmune disease, but specifically attacks the gastrointestinal tract.

Talking with "Buddy" and communicating through email was a total boon for both my spirits and collected information regarding drugs used to treat RA. Many of the same drugs used to combat Crohn's are used to battle RA. It would seem from my research that all of the new drugs that are used to treat RA are first used on Crohn's patients. Conversations with Buddy filled my head with various terms and drug names: TNF blockers, Enbrel, Humira, Remicade, methotrexate, DMARDs, NSAIDs, etc. To be quite honest, I still don't have my mind wrapped around all of the lingo and I have been taking a lot of this medication for well over two years now. Here is the breakdown of the terms for the layman:

• DMARDs - disease modifying anti-rheumatic drug
• TNF Inhibitor/Blocker - tumor necrosis factors blocker
• NSAIDs - non-steroidal anti-inflammatory drugs

Getting back to my timeline, I will start where I left off--around June 2007. I was finally being treated for RA by my South Philly rheumatologist. Treatment was sluggishly progressing and it seemed my medication dosages were being elevated at a very slow rate. I was not responding to treatment very well. There was still a lot of pain and I was starting to waste away physically. My muscles were slowly starting to shrink, joints were getting stiff and turning, and movement was slow and painful. I was getting discouraged with my doctor's treatments and very slow approach to getting me on the newer drugs. At this point, we were still using a combination of old-school DMARDs, TNF blockers, and NSAIDs. I really wanted to be on the new TNF blocker drugs, like Humira or Enbrel. To me, these new drugs seemed like the magic cure... the elixir of normality. My rheumatologist was hesitant to put me on these drugs because of insurance concerns. These drugs are expensive. They work wonders, but they can cost up to $13,000 USD per year for someone without insurance coverage. Insurance companies want all other avenues of treatment exhausted before allowing the new-school drugs. I don't blame them, nor do I blame the drug companies for charging so much. These drugs took years and years of research and development, though I am getting a bit ahead of myself.

Around July or August of 2007, I decided that going to and from South Philly from West Philly, where I work, was too difficult and time consuming using mass transit. I was in a lot of pain and getting on and off two subway lines was very difficult, even on good days. I switched to a rheumatologist at the University of Pennsylvania Health System. I still remember my first visit with the doctor, my wife went with me. It was in a somewhat modern hospital (has since moved over to a newly constructed building on the health system campus) and the staff was very professional and less informal. Where my old doctor's office was a bit lax and would make me wait sometimes 2.5 hours before seeing the doctor, this office was prompt and my wait has never been more than 20 minutes.

Upon meeting my new rheumatologist, I had the following impression:

• He was young, probably in his middle 30s though he looks much younger.
• Nice demeanor, yet kept a certain sense of professionalism.
• Bearded, looks like a lot of the post-emo "kids" I see around Philly.

He looked over my charts and transferred records, examined me thoroughly, and asked a number of lifestyle/health questions. He pretty much summed up my new, more aggressive, treatment to battle the disease in just a few sentences. Summarizing, he upped all of my meds and immediately started to lobby my insurance company for the new-school drugs. He also said that once everything was under control I could probably start jogging again; though he was a bit guarded by saying that it might not be the same as before. It was a very heavy moment in the examination room. After nine months of horrific pain and suffering, he was actually talking about going back to my "old life." My wife actually started to cry. It was at that moment, I knew just how hard it had been on everyone in the house. 

This doctor, in comparison with the old doctor, was a breath of fresh air. Both were professional, but the new doctor seemed more aggressive and sure. The old doctor was cautious and analytical. I just wasn't getting any results from the old doctor's treatment. I almost seemed to be getting worse, if that makes any sense. He would change my prescriptions very minimally, hoping that it would take the edge off my pain and move me closer to normal. This new doctor clearly wanted to move further towards normal and clear of pain and deformity.

I will leave off here, though I want to get something across to the reader. Without this new doctor's more aggressive treatment, I would not have been able to recover as quickly. It still took a long time to recover, but it was amazing how my body started to respond to the higher dosages of medications and I haven't even started talking about Humira yet. I will specifically tackle drugs and their impact on my mobility in the next post. Thanks for reading. :-)

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If you haven't read the first post regarding my initial encounter with rheumatoid arthritis, please do so. It will give you a little background leading up to this post. My last post left off just before my first doctor's appointment with a rheumatologist. My timeline is still a bit fuzzy, so please bear with me as I gather my thoughts in this post. This should cover from roughly the end of 2006 to around June 2007.

I had a lot of hopes going into the first appointment. My biggest hope was that the doctor would give me a magic pill and I would get my old life back. At this point, I knew that something was very wrong with my body and I would require treatment. My memory is not the greatest on good days and, in regard to my early treatment, my memories are a bit vague. I do remember three things very clearly about my first visit with the new doctor:

1. He was a very tan older guy that looked like he just got off a yacht.
2. He had very menthol-like cologne.
3. The office patients were all well over 60.

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Time seems elusive to me. I cannot seem to grasp it without context. I mention this because I have been trying to piece together the timeline of my encounter with rheumatoid arthritis (1, 2). There is an official date of diagnosis and an extended timeline of events leading up to the present. But looking back on all of the aches and pains I experienced before my first significant flare-up, I can confidently say there were indicators two years before my diagnosis by physicians. It feels so weird to write about this topic. I don't want to sound like I am complaining or want any kind of sympathy. Comparing my first significant flare-up to now, I have definitely come through to the other side of this malady. It has been a long road from not knowing to appropriate treatment and regained mobility. There were significant obstacles--after I was certain something was wrong with me--transitioning from afflicted to a more normal life. I feel that I should write these experiences and thoughts down for others, and a blog format is probably easiest for me.

Before RA, I was relatively healthy and enjoyed long-distance running in half-, full-, and ultra- marathons. I looked forward to solitude that came with the endeavor and was pretty disciplined when it came to training. I wouldn't let weather, sickness, or conflicting events impede my training schedule. Maybe it was being a former-Marine, but I was determined to get in my daily runs and enjoy the runner's high that came with the completion of my workouts. In 2006, I had finished an organized distance run in the spring and had started training for the Philadelphia autumn half- and full marathons. Somehow, in middle September, I had torn my anterior cruciate ligament (ACL) and meniscus while indoor climbing. I was in a bit of pain, but it wasn't horrible. Surgery was scheduled for the week after the half-marathon, so I taped up and braced my knee and ran it anyway. It was kind of a bone-headed thing to do, but I thought I could suck it up and cover the distance no matter the cost. Whatever damage happened during the race, the docs could fix in the operating room the next day. Leading up to the ACL tear, I had sporadic pains in my hips, feet, back, and knees. I had always thought this was due to over-training or worn out shoes. For a couple years, I would change my shoes frequently--every 300 miles. This seemed excessive to me, but  I would do almost anything to have pain-free runs; even taking way too much Tylenol, an hour before my runs, in order to deal with the pain. When I tore my ACL, the orthopedic doctor was examining my knee and MRIs when I mentioned pain in my shoulder joints. He attributed this to damage from weight lifting. He gave me a shot of cortisone and we both thought the shoulder pain would go away. At this point, I thought that I was rapidly approaching middle age and that I should reevaluate my fitness regimen after the scheduled surgery.

The half-marathon, before my surgery, was to be my last distance run. I completed the distance, running only 10 minutes slower than the previous year. So I considered the event a success, all things considered. The next day was my surgery. It was an arthroscopic procedure at Jefferson Hospital in Philadelphia. The doctor repaired my torn ACL and meniscus while at the same time smoothing out the knee joint. After the surgery, I felt like crap and I was all doped up on pain killers. After a day or so, I was hobbling around on crutches and being a terrible burden to my family while we moved into a new home. We had purchased a house in Lansdowne, PA and moved in the weekend after the surgery. Here is where my memory starts to fail me a little. I started back to work, my leg healing nicely, and followed up with regular doctor's appointments for several weeks. It was around the middle of December when I felt as though I was having problems walking, taking the stairs, lifting things--any kind of movement in general. I was noticeably limping and it became so bad that I needed to take the stairs backwards, if that makes any sense. My orthopedic doctor didn't know what to make of the new symptoms, sending me back to my primary care physician for a referral with a rheumatologist.

Luckily, I was going on vacation from work and I would be able to deal with this on my own time. I was in pain before my appointment with a rheumatologist located in South Philadelphia, but nothing was like the full flare-up that hit me in the last week of December. The pain was all over and seemed to engulf my entire body whenever I made the slightest movement. My family was shocked and I was completely useless at this point. It was as though my joints were on fire and wrapped in broken glass. I found that I felt some relief as the day progressed and that a shower and tons of Advil would alter the severity of the pain. My mind was reeling and I scoured the internet for some kind of explanation for what was going on with me. After cursory searches, I came back with a number of amateur prognoses: gout, rheumatoid arthritis, Gulf War Syndrome, or fibromyalgia. Each of the maladies seemed cryptic and nebulous. My rheumatology appointment wasn't for another week and I endured the pain, hoping that the doctor would give me some kind of relief from the constant torment and allow me to be mobile again. Little did I know, successful treatment would only come after misdiagnosis, seemingly endless rounds of drug therapy, and a change in physicians.

This seems a good place to leave off. I do have a plan regarding this blog. The subsequent posts will deal with different areas of the linear timeline I have presented and other, less tangible, elements that surfaced during my experience with RA. I hope to update this blog on a weekly basis until my initial outline is complete. From there, I will post less in-depth updates related to RA and dealing with it. I know the timeline seems a bit muddled. Looking back on the experience, it all seems like some big blur. There were a number of people who helped me through this period and I fully intend to mention them as I continue to post. I used to think that I could handle anything on my own and come through without assistance. I still think that is my best way with dealing with crap that life throws at me, but it was really surprising to see how many people went out of their way to show support and helped me through this really dark period of my life. Thanks for reading my post.

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