Monday, August 15, 2011

Changes - Part 1

Last Monday, I did something I haven't been able to do in over two years.

I worked out.

Actually, I worked out twice, once in the morning, and then again in the evening.

I haven't been able to, because the pain, inflammation, and dependent fluid retention in my joints was so sever that I simply could not do it. My body wouldn't support my weight, and the weight I wanted to lift. It wouldn't let me pedal the bike and then walk away...

And now, that's changed, because my doctors have finally found a good balance of medication for me.

For the past few years they've been... experimenting shall we say... with what medications actually help me, what does nothing, and what actually makes things worse.

I've been on almost every anti-inflammatory out there up til now; except lodine, celexa, and vioxx (which they pulled off the market a few years ago.

Most recently we were trying meloxicam (aka Mobic); and it did help, but only in very high doses (60mg daily. Normal is 15mg). That said, if taken in combination with Ibuprofen or Naproxen, it made them more effective.

It wasn't enough, but it took the edge off.

The problem with strong prescription anti-inflammatories, is that they all tend to have nasty side effects; including ones that make my other symptoms worse (like edema, and gastrointestinal difficulties). Some of them also interact badly, or are at least partially counteracted with testosterone, and somebadly with strong diuretics).

Given that, my normal docs were very leery of prescribing anything "stronger" than Naproxen. My GP only agreed to prescribe Meloxicam on an "as needed" basis, for when the inflammation got so severe I had trouble walking.

Which, unfortunately, it had been since fourth of July weekend (I slipped and fell on the dock while swimming, and torqued something. I couldn't walk at all the next few days).

Then, two weeks ago, I finally had my appointment with my new orthopedist. He listened to my history, examined my joints, and immediately sent me down for x-rays (same office visit, came right back up with them 30 minutes later).

And he said something that surprised me.

He said I don't need knee replacements yet.

That yes, they're both in rough shape ( I have osteo-arthritis, synovitis, and cartilage and tendon damage in both; and I may be developing rheumatoid arthritis, but it's too early to tell); I can regain much of my mobility with proper drug treatment and the right exercise regime.

Because I have been in so much pain for so long, my supporting muscles have atrophied and tendons and ligaments have lost flexibility(because the joints hurt so much, I try to avoid moving in the ways that make them hurt worse, which means I don't exercise those muscles and stretch those tendons enough). This in turn made the joints less stable, which made them hurt worse and so on, in a vicious circle.

That day, he started me on Lodine (aka Etodolac), 400mg twice a day (1200mg is the highest daily dose allowed. They make it in 400, 500, and 600mg tabs).

The next day, I was able to walk up and down the stairs in my house without pain, for the first time, ever.

I wasn't flexible... I was stiff, and slow... but I wasn't actually hurting when I started, or when I finished.

Thing is...

I haven't used a flight of stairs without pain in 10 years.

I should be clear... The pain isn't GONE by any stretch of the imagination; but it's so reduced as to be nothing in comparison. I went from a level 4 constant background pain with spikes to level 7; down to a 1, with spikes to a 2 or 3.

And walking up and down the stairs, doesn't really aggravate it. I can go up and down the stairs a half dozen times in a couple hours now, and be fine; whereas before more than two or three times a day and I wouldn't be able to move for hours.

It's not perfect of course. It works a lot better when I double them up to 800mg, and its peak effects only last for two hours or so; but two of them, timed properly, cut the pain and improve my mobility dramatically all day long.

I've asked the doc to up me to two 500s a day and see how that works (the 600mg is extended release only; and ER formulations don't work well for me; plus diuretics tend to make them much less effective).

The next thing the doc wants to do hasn't happened yet; but the medication is ordered (should be here next week actually).

Instead of cortisone injections in the knees (which only last a few weeks, and have their own side effects, like accelerating joint degeneration), he wants to try my out with injections of Synvisc (hylauronic acid in an oil based lubricating transport).

It's supposed to both lubricate the joint, and reduce inflammation dramatically.

Unfortunately my copay is $400 a piece for the injections, even after my out of pocket max for the year (yeah I know... insane). Apparently this stuff is also popular in cosmetic surgery (where it's sold under the trade name Restalyn), so they can charge a fortune for it; and they won't price the orthopedic version any less so it won't be used cosmetically, off label.

Also, it doesn't work for everyone; and for a small percentage, it actually causes a bad histamine reaction (like a nasty bee sting, only inside the joint). So, he wants to try me out and see how it works for me on one knee, wait a few weeks then do the other one.

If it works, I would need to get a series of shots in each knee; but the inflammation should be dramatically reduced for several years, delaying, or even eliminating, the need for surgery (at least until my mid 40s to early 50s. The doc is pretty sure by then I will need the knee replacements).

The final thing the doc ordered (other than losing weight of course), is that I absolutely MUST work out again (particularly with the testosterone).

Of course I knew that already, and it was part of the plan; but the pain was in the way.

Now the pain isn't in the way (or at least not enough to stop me).

I am under strict order to exercise my legs, and in particular my knee joint, and the supporting muscled and tendons. Not to overstrain them, but to give them frequent, repetitive, no impact tension and stress. I.E. the exercise, and leg extensions and thigh curls at high reps and low weight.

So, last weekend I snagged myself this:

Which, after a couple hours of effort became this:

And along with this (325lbs on a weight tree):

and this (which I already had):

And I'm working out again, finally.

20 minutes on the bike in the morning, followed by 40 minutes on light to moderate weight and high reps; then 20 more minutes on the bike in the evening.

At least when I have the time, which starting this week is a lot less (more on that in a later post).