Thursday, August 09, 2012

The B!tch is Back

Back at the very tail end of 2006 I started having some persistent aches and pains. As someone who is fairly active in general and as an active cyclist in particular, this is to be expected. It's just part of the game as well as part of the normal aging process. I really didn't think a whole lot about it at first. As time wore on I started to see some additional issues. The biggest one circled around chronic lower back pain and sciatica like symptoms on the left side.

I attacked the problem with lots of stretching are core strengthening as suggested by some sessions with a physical therapist. At that time I was riding a little less, given that it was the winter and playing a lot of squash. We were also downhill skiing a bunch as well as snowmobiling, which meant lots of commuting to and from Maine in the truck and lots of hours out on the sled.

Early in 2007 I started to develop some swelling in my right knee. Initially I blamed it on a combination of the driving, which has always aggravated my right knee as well as snowmobiling which puts lots of side stress on the knees when riding our style sleds (Ski-Doo Rev MXZ platform) aggressively. I had also started to favor the right leg because of the left side lower back and sciatica issues on the bike, which added more stress. Around this time I was also experimenting with telemark skiing, poorly, which added knee stress as well. This created a perfect storm of input that when coupled with the uptick in cycling mileage and intensity for the seasonal ramp-up, ripped my knee apart. Or so we all thought.

After some attempts to nurse it followed by some physical therapy failed, I went to see a surgeon. An MRI confirmed a sizable tear in the right meniscus, which of course would cause the inflammation. That was the neat answer everyone was looking for. The surgery was quick and clean and a full recovery was expected ion no time. This was mid April of 2007. Recovery took about what was projected, which was about double what I was hoping for. Once the swelling finally subsided and the mobility came back I was able to start back at riding in earnest. At first I was a mess, with early season ability in a pack of mid season fitness. I got dropped in races I'd previously been competitive in. We did a two day charity ride at the end of June with a group of folks on tandems. At this event I started to have some problems with my right foot. I assumed it was from a day of pushing hard on the bike. Later I developed a stiff neck, which I attributed to sleeping on a cot the night before as well as riding hard the win the charity ride that weekend. As cyclists we are prone to neck and shoulder issues anyhow, based on position and the fact that we often disregard upper body and core in favor of the legs. Made sense, I guess.

Meanwhile, the fitness finally built back up and by the end of the road season I was back on top of things. My fitness increased beyond where it had been and culminated in what is probably the most commanding performances I've ever had in a road race, at the Witches Cup in early August, where I was dominant. The success was short lived however. Literally the next day I decided to do the Thursday night CRW Hanscom  A-ride. Despite tired legs I went super hard. By the next morning my knee had swollen back up. That stiff neck I'd had still lingered ever since it started a month and a half before. Another funny ache accompanied by swelling came from my left thumb, at the IP joint. I blamed this on years of installing bicycle tires. I saw a specialist who scratched his head, took X-rays and casually says that maybe it's arthritic. To me that means degenerative and that you just deal with it.

Soon after the start of cyclocross season I started having heel pain issues on my right foot. Of course that is the heel I pant with on a cyclocross dismount. I saw a podiatrist who labeled it plantar fasciitis and treated it with PT and cortisone. My thumb was stiff, swollen and sore, my right knee was still mildly swollen and my neck was still stiff. I was getting some PT for the neck which didn't really help either, unfortunately. The cross season went OK but the strain of the constant, chronic aches and pains coupled with the lack of restful sleep were taking a heavy tool. The up side was that this stress helped me lose the last 10 to 15 pounds I'd been unable to shed and literally reshaped me. Unfortunately, I looked slightly drawn, sullen and 20 years older.

Along about that time I started to develop some mild, patchy skin issues. At first I assumed they were hygiene related but couldn't get them to clear. They were mild and not publicly visible though so I just lived with it and kept it to myself. Later while my barber, also my brother, was cutting my hair he asked me when I developed psoriasis. I said I didn't but had noted a minor scalp condition on the back of my head.

Fast forward to a fresh new 2008. All of the individual issues are still lingering. We've invested in a new, mattress set and orthopedic pillows in a hopes of finding some relief. I'm back at PT trying to be proactive and deal with these apparently unrelated issues. My PT, also a cyclist and friend, notices the skin irritation on the back of my scalp and does some research. She discovers a systemic condition that is a form of Spondyloarthrapy called Psoriatic Arthritis. Like other autoimmune system diseases such as Psoriasis, Rheumatoid arthritis, UC, Chron's and a host of others, basically what happens is that the body's immune system attacks healthy cells. Sweet.

With that and after doing some research, I made an appointment with a Rheumatologist, Dr. Martin Kafina in Concord, MA. He listened to my symptoms, took a look at the issues and quickly and definitively diagnosed as Psoriatic Arthritis. He was also a cycling enthusiast and loved to talk bikes, which put me at ease. The plan of attack was to try a steroidal treatment and see how that worked, while also running some tests for rheumatoid indicators to back up the diagnosis. At first the steroid treatment provided relief and I started to feel good for the first time in a long while. Unfortunately as soon as the course tapered I started to feel poorly again.

The next course was a bit more drastic and involved relatively new medication called Humira that that works by inhibiting TNF, a part of the immune system responsible for, among other things, inflammation. There were potential negative side effects, of course, some of which could be pretty dire but things had gotten to the point where we needed some relief. The drug was insanely expensive at $500/dose and consisted of .8ml sub-cutaneous self injections every other week. I hate needles so that part was disconcerting for sure. Luckily the meds were mostly covered by insurance as well. My first treatment was at the very end of January 2008, on my birthday.

Although it was expected to take a number of doses before the effects kicks in and any progress was seen, I saw improvement quickly. Within a couple of doses the symptoms had mostly subsided. Within a couple of months all that remained was some residual Psoriasis in two small areas that were hidden. The joint pain and swelling were all gone, and so it was for some time. Within a year or so we were starting to discuss the possibility of ending the treatment at some point in the future. I had mixed feelings as I could still remember what it was like before, but also hated the idea of being dependent on a drug. 2009 was my best racing year ever and I rode and trained really hard with no negative response from my body. By the start of 2010 I'd decided to see if I could reduce my treatment, so started going four weeks between doses. I saw no perceivable negative effects. I later changed this to monthly doses, just to make it easy to remember. A couple of times I decided to quit all together and made it for a few months before worrying about relapse and returning to my reduced course.

Starting in 2012 we decided to try and come off from the treatment all together. In it's place the doctor prescribed an old fashioned DMARD (Sulfasalazine) that he hoped would keep me in remission. Unfortunately, I didn't fully grasp that and when coupled with the fact that the drug, in tablet form, was take 3x/day and had it's own side effects I didn't adhere to the plan, at all. I got laid off at the start of February of 2012 and spent the next few months very active, moving around and working around the house as well as cycling. Oddly, the form of arthritis that I have actually gets worse the less you do. As such, I felt fine.

It wasn't until I went back to work at the start of June that I started to notice changes. The onset was with lower, left side, back pain. I attributed this to sitting on my but for 10 hours a day at the new job and saw the local Chiropractor seeing help. Soon my lower back was fixed but I'd developed a stiff neck and sore left shoulder. Hold on, this was starting to sound familiar. I'd also been having some pain in the big toe of my right foot which I blamed on some shoes that I had which were too tight. Soon I also noticed swelling in the toe, which although new, was also familiar. This disease often presents itself with asymmetrical issues. Right toe, left shoulder or right knee, left thumb. Strange stuff. The doctor was skeptical and ordered X-Rays and a blood test and prescribed more of the DMARD I'd previously avoided and told me to come back in a month.

Things were pretty much the same at that visit, toward the end of July, though my lower back was now fine and the neck was a mess. The toe came and went but was mostly irritated. The doctor ordered an MRI to make sure that the spine was clear of real injury and once again prescribed Humira despite the fact that he still had reservations. The fact that I had none of the stereotypical swelling in the knees or elbows fueled that skepticism. Almost on queue, the day after my last appointment, my right knee swelled up. I'd had no inflammation in that knee for years and had no new injury so I knew something was amiss. The MRI also showed nothing, as expected.

That was almost two and a half weeks ago. I'm now trying to get through the prescription drug pre-approval, specialty pharmacy submission with the new health insurer in hopes that the prescription will some day get filled so I can restart treatment. I'm hopeful that it will happen soon and that it will once again work as miraculously as before. Of course I remain somewhat skeptical but I have no reason to believe that it wouldn't work as before.

As bad as I feel, which really isn't that bad comparatively, I've got one thing firmly planted in my mind. That being how my issues pale in comparison to those of one of the young men on the Junior Development team that we managed the past couple of years. His name is Brandon and this spring he had some GI issues and was diagnosed with UC. It very quickly got really bad and landed him in the hospital. Unfortunately, he didn't respond to any of the treatments and underwent surgery. His dad Russ, also a local cyclist, sends out updates and so we are able to keep tabs on the status.

From that first operation there were issues but he finally recovered and was able to go home after a month in the hospital. But not before having missed his high school graduation as well as the heart of the cycling season, not to mention losing over 30#, which for a small kid to start with was devastating. We saw him a few weeks ago and he looked and sounded good and was optimistic and upbeat, as always. A couple days later he was slated for the second surgery which would get him set to be able to attend his freshman year at USC. That surgery had issues and Brandon has yet to be released from the hospital. He has also been unable to eat. This kid is only 17 years old and has the strength and will to deal with all of that. I think I can deal with a little swelling and joint pain.

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