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. :-)