Jazz T-Bone: The homepage for Joe Jackson

Tuesday May 5, 2008

Howdy everybody!! Time for an update.

My Prednisone taper program was rudely interrupted by a relapse in mid-March. Rheumy Doc put me back up to 20mg per day and slowed my taper program to going down 2.5 mg every two weeks until I get to five, and then 1 mg every two week until I'm completely phased out on August 4th.

The good news is that this new program did the trick, apparently Methotrexate is having some effect, I am back to the 70-85% pain-free level that I am accustomed to, and my body continues to get stronger. I am even managing to do light aerobic exercise at the gym, 30 minutes a day approximately 3 times per week.

The really good news is that I have been playing the horn every day now since the beginning of March, and I consider myself 100% back from the hiatus in about mid-April. In fact I did a guest artist gig as the featured soloist for the TCU Jazz Festival in late March and was pretty happy with the performance. I did the gig without the handle but with Tylenol 3, and my left wrist didn't begin to give out until the last tune.

The bad news is that the Air Force is being very, very naughty.

Despite the fact that I took a very high daily Prednisone dosage of 40 mg for three months (and was still on 15 mg a day - still definied as "high dose"), and that excessive weight gained is commonly regarded as an expected side effect of high-dose Prednisone therapy, my Primary Care Manager (an Air Force Captain and Nurse Practitioner) felt that it was against Air Force regulations to profile me from the abdominal circumference component of the annual fitness test.

The profile she sent excluded me from any activity requiring repeated knee and/or ankle flexion, and any pressure or weight on my hands or wrists.

At my appointment with the Bolling Air Force Base Fitness Program Director, he mandated that my fitness test would consist of the cycle ergometry test and the abdominal circumference measurement. Why the cycle ergometry, when my profile clearly ruled out repeated knee flexion, I don't know. But here's the thing:

The abdominal circumference (AC) measurement in the fitness test is, per se, a little ridiculous, since a proportionally-built 6' 4" guy is going to naturally have a larger AC than a proportionally-built 5' 5" guy. So it's unfair to tall guys to start out with.

Add to that the fact that I have never been a skinny dude - I have always floated around an 37-38 inch AC, however I am a really good runner and have always been able to do the 1.5 mile run in 10:30 to 11:20 - the run, combined with my push-up and sit-up totals have always outweighed (yuck, yuck) my mediocre score in AC to give me a very good or even excellent score on the fitness test.

Now when they exclude components of the test, what they do is take the remaining components and pro rate them to come up with the total. What that means in my case is that I could no longer run myself to a passing score.

So naturally I did not raise a stink when they qualified me for the cycle ergometry - back in the last 1990s when the cycle ergmetry comprised the entire fitness test, I always killed it since it measures your heart rate and how it responds to pedaling against resistance over time.

But here's the killer - first off the cycle ergometry test HURT me because I got on the bike and realized you had to support a substantial amount of your weight with your wrists, and I simply can't do that no matter how much opioid painkillers I take.

Second, I flunked the HELL out of the test.

At first I didn't know why. Then something flashed in the back of my head and remembered, oh yeah, Prednisone elevates your blood pressure AND your heart rate. So much for science.

In any case, I failed the test and after that everything's automatic and there's no exemption: you get put on the Fitness Improvement Program, you attend a frive-hour life skills class, a body composition class, and you have to have supervised workouts at least three times a week. If you don't do that stuff they start piling paperwork on you, that's the short and long of it.

I've done one of the classes and have been making it to the gym, even on our 2-week tour which ended just this last Sunday. Unfortunately, every time I do any sustained movement, either upper or lower body, my arthritis flares up systemically. But between will and painkillers I have been able to fight through it and stay with the program.

The really bad part (at least it seemed bad until I have had a recent change of perspective) is that if I don't pass the test by August my rating report will get marked down and that will effectively block me from advancement for the rest of my career

And realistically there's no way I am going to pass the test by August. For me to pass my waist needs to get to 36 inches which equates to about 185-190 pounds (from my current 238). Well, again I'm a 6' 4" guy and I haven't weighed 185 pounds since I was a sophomore in high school. And every doctor I have spoken to that knows anything about high-dose Prednisone therapy guarantees me I will not be able to lose weight while I am taking it.

Of course my PCM's response is "Well, Prednisone doesn't have any calories." Hmm, that's real helpful. I guess that's why the NEJM meta study reveals that high-dose Prednisone patients gain an average of 13% of their body weight during therapy, because Prednisone doesn't have any calories. Sheesh.

Saturday March 22, 2008

> From: Joseph Awad [mailto:habebe@comcast.net]
> Sent: Friday, March 21, 2008 8:57 PM
> To: shoeless@jazztbone.com
> Subject: Arthritis Advice
>
> Hadn't visited your site in a while. Sorry to hear about your arthritic problems.
> I am a physician-trombonist. Certainly sounds like you have a bona-fide
> inflammatory arthritis even if it might be difficult to categorize.
> I couldn't tell if you have been on anything stronger than prednisone.
> Prednisone is a great anti-inflammatory but we rapidly transition to more potent
> immunomodulating agents to spare side effects of prednisone once there is
> confidence in the diagnosis or type of disorder present.
>
> If this has happened yet, I am wondering why they would not consider
> an anti-TNF (tumor necrosis factor) drug like Remicade or Enbrel.
> Sometimes folks (especially rigid military types) are afraid to try a
> drug if the diagnosis is not absolute. I am not disparaging military
> docs as I am a VA physician (head of Transplant Unit at Nashville VA, Liver MD).
> I just know that thinking outside the box is sometimes not encourage especially
> when the costs are quite high (these are expensive drugs).
>
> Anti-TNF drugs have pretty low toxicity and if they work the therapeutic trial
> would be worth it.
> Best wishes
>
> Joe Awad, MD
> www.bonetherapy.org

On Mar 22, 2008, at 6:12 AM, Joe Jackson wrote:

> Hey Joe/Dr. Awad - I really appreciate the email.
>
> Right now I am transitioning off of Prednisone and on to Methotrexate.
>
> I was doing 40 mg of Prednisone a day and now am in my seventh week of
> weaning off of it. Last week I went down to 15 a day from 20 and had
> a huge flareup plus I have been having problems with severe fatigue
> for the first
> 72 hours after each reduction of dosage. Rheumy doc put me back on
> 20mg a day and slowed down the Prednisone cessation project to going
> down 2.5 mg per 2 weeks and then 1 per 2 weeks once I get to 5. I'm really
> into getting off Prednisone as I know it is very dangerous and plus I have
> gained about 35 pounds and none of my hats fit, lol.
>
> I am approximately seven weeks into Methotrexate and am up to 6 pills
> each week, which I believe is 15 mg. Needless to say I am not
> impressed with Methotrexate yet since I seemed to go into freefall
> (and am still not as good as I was a month ago) once the Prednisone
> buildup began to subside. However I know it can take up to eight weeks
> or so to start being effective.
>
> My plan is that when I get to the end of April, I'll be at about 10 mg
> of Prednisone and the Methotrexate will have had 12-13 weeks, and if I
> start going downhill fast I'm going to suggest Remicade (Infliximab)
> or Enbrel (Etanercept) to him. He's been a very good doc in my opinion and has
> been very proactive and responds to phone calls very well - but if he
> shows resistance to any medications at all I will get another doctor,
> believe me I have no patience for that.
>
> I know what you mean about the military being rigid, sometimes it's
> more the administration than the docs - my AF-contracted chiro (who is
> the best chiro I've ever had!) is getting fired because he is refusing
> inoculations. Sigh.
>
> Anyway, you are certainly not the first person to suggest the anti-
> TNF drugs (Galen McQuarrie, another trombone player/MD from Washington
> suggested the same thing) and again I appreciate you taking the time
> to email me.
>
> Love your website! Your group looks like lots of fun.
>
> Best,
>
> Joe

-----Original Message-----
From: Joseph Awad [mailto:habebe@comcast.net]
Sent: Saturday, March 22, 2008 11:46 AM
To: Joe Jackson
Subject: Re: Arthritis Advice

Sounds like you are on the right track.
My guess is that if your joints had shown more overt inflammatory
changes (swelling and redness) than just pain your diagnosis and
treatment would have come more quickly.

It may take methotrexate a while to kick in. Until it does or you
start the anti-TNF drugs the prednisone taper will be uncomfortable
or impossible.

I have enjoyed you web site. I played a Williams 6 in college and
just got one again last year and it was like coming home. I recently
picked up a used Shires that comes close in emulating it but I need
to replace the nickel slide with a brass one. I just love the and
grip on the Williams slide. Would love to have the Williams slide/
leadpipe set up on the Shires bell but the receiver is different.

About 4 years ago, as my medical career was maturing and my kids were
starting band, I started to rededicate myself to the trombone. I had
played intermittently with big bands but every time I would get back
into shape we wouldn't play for a few months. I also decided to start
playing a large bore horn again. I formed Bone Therapy and it grew
more rapidly than I expected. Playing trombone keeps me sane and
relieves the stress of the life and death medicine that I practice. I
can't wait to get home/or meet with a group and pick up the horn each
day.

Although I have often looked forward to retirement to devote more
time to music I also have wondered what would happen if my health did
not allow me to play trombone like as well as I would like and what
other parts of music I could still find as enjoyable. It also has
driven me not to delay too long doing things I want to do like
learning to improvise. Later I will try to learn more about theory
and arranging.

I love some of the Bone Voyage arrangements. Four is one of my
favorites. I guess the US government owns these arrangements but they
would be fun to try to play.

I am also leading the group that will be bringing back the
International Trombone Festival (Workshop) back to Nashville for the
40th Anniversary in 2011. My college trombone teacher (Henry Romersa)
put the first workshops together in Nashville. In 2003 I realized
that my life was really screwed up when I looked back at 2001 when
the 30th Anniversary was here and I was so busy I could not attend a
single event.

I hope that the next few months will find you well on the road to
recovery.

Tuesday February 26, 2008

Have not posted in a while!

Rich and I went into a time warp where we were driving to Bias in Springfield to mix the live CD, leaving each morning in the dark to hit my normal litany of docs at Andrews and returning from VA each evening in the dark. We did this for three weeks and emerged on the other side with us holding an awesome final product and everyone else saying, "where have you guys been? There's work for you to do!"

Obviously this has kept me from getting as much time on the horn as I needed to, however I have been playing quite a bit for the last week or so. I think the handle is going to work. The tricky part is resisting the temptation not to use it when my elbow can get the horn to my face in normal playing position. If I'm going to have attacks and not be able to bend my elbow I better damn well be used to playing the horn using the handle. so it's critical I use it all the time. Plus my Air Force profile says I have to use it so...

Med Report. At my appointment on February 4, Rheumy put me on a program wherein I would:

1. Gradually step down Prednisone dose (-5 mg per day each week, ending at 0 mg on April 31).

2. Start taking Methotrexate. It's a weekly dose, starting with 20 mg and going up 5 mg every two weeks for a month, ending at 30 mg per week.

Everyone's asking if things are changing, well first of all let me say I am happy to be off Prednisone.

To be fair, Prednisone has really saved me a TON of pain. In the middle of December I struggled to stand up, and I couldn't tie my shoes or button my shirts. Getting dressed took about 20 minutes. Now I can do all dat and MORE!! But by the same token, over the last three months I can count on one hand the number of nights I've slept more than 5 hours, I am wired 24 hours a day, and I have hand and voice tremors.

And, dig this, I HAVE GAINED ALMOST 30 POUNDS! When they say hi-dose Prednisone puts the weight on, they ain't kidding!!! I knew this coming in and thought my really good anti-allergy diet would thwart it, no way Jose. I was at around 206-208 in early January, yesterday I'm at about 235. Plus my head's gone all Barry Bonds big - another lovely side effect of Prednisone. I look like Mister Golden Sun.

Now I should consider myself lucky - for most people 30 pounds is a massive amount of weight and the Air Force certainly would not let me appear on stage. And if the pounds keep packing on I may eventually get there but us tall guys have the advantage of being able to carry a more weight than shorter people without looking all super-obese.

HOWEVER, moving on to the Methotrexate, all I can say is that this is a serious drug. I think the potential side effects of this drug are in fact more serious than Prednisone, however they are much more rare. And so far all I can report is that I take the dose on Monday night, I generally feel OK all day Tuesday, but for about a 24-hour period of time beginning Tuesday night I just feel like lying down - totally out of it. and to cap it off, the Methotrexate's getting all puffed up in Prednisone's face and they are having serious turf wars. Preddy takes me on that elevator ride to the top floor and then Metho cuts the rope. Not awesome!

Pain Report: All in all, I have to say I have not suffered a decline per se. I still consider myself at about 75% to 85% pain-free which is about where I was when I was at the 8-week apex of my Prednisone dose. I don't know if that's the Methotrexate kicking in OR if it's my dietary and or/life-stress modifications or supplements or what, but I will take it. Now, I'm still on 25 mg Prednisone a day plus I'm halfway to my full Methotrexate dose, so I don't know if my pain level proves anything right now since I'm actually on more drugs than ever.

That's one of the reasons I haven't posted - the RX transition is so stretched out that I haven't felt like there's anything to report, other than I'm still relatively pain-free and functioning and playing my horn. Yay.

Thursday January 31, 2008

OK, THIS is version 1.1:

Went to Jeff's on Monday and he made this. We took the handle and reversed it, shortened the tube and then bent it and attached it to the horn with a 45.

Now when you pull on the handle to maintain pressure at the aperture, the action of the handle rotates the top of the horn towards the face and equalizes the lower plane of force the horn is coming in at, and creates much more even force on the top and bottom lip.

Pretty excited about this one. however we're in Springfield at Bias all day every day for three weeks mixing our live CD so there's not much time for playing it right now. I'm looking forward to getting some time on it this weekend.

Friday January 25, 2008

Maybe this is version 1.1?:

(This is just a PhotoShop mockup)

I thought of this while I was waking up this morning. Seems like having the handle inverted naturally tips the horn, rotating it towards the player. That might compensate for the force from the left hand coming in low and spinning it away.

I sent this to Jeff to see what he thinks.

Wednesday January 23, 2008

Back on the horn!!!

Went to Jeff Bonk's yesterday, he had everything laid out and we put the handle together. It was an incremental process, he had already made the mount, and he would have me hold the pieces loosely put together and we would commit to one joint at a time and he would solder it on. Then we would move on to the next joint.

It was a 3-hour process and at the end here's what we came up with:

It looks rough, I know. In fact it looks like something straight out of Super Mario:

It's just the mockup, the working model. It will be pretty later, he's either going to do another one in more high-tech materials when we have the template worked out, or we're going to buff this one down and silver plate it or something.

But it works! I got it home last night and tried playing it. I played about half of Groovin' High and then my face felt like I had two marshmallows attached. I counted up the days since I last played - 51 days. Still it was an unnerving feeling and it was not exactly fun playing with the handle.

There are two problems with it:

1. Keeping the horn steady and stable. This mostly comes up in the lower register, as any player knows the movement of the slide wants to move the mouthpiece on the face. normally, the left hand holding the mouthpiece right near the face provides a firm and stable hold on the horn and prevents it from moving BUT with this thing you are gripping the horn so far from the mouthpiece and with the arm extended, it's tough maintaining a steady grip.

2. Managing mouthpiece pressure. Again, the normal left hand hold gives really good control over the amount and direction of mouthpiece pressure on the face. This handle is so far from the MP that I'm having trouble modulating the pressure and doing all the things I normally do when I go up and down on the horn. AND I have to torque the handle up to get the pressure needed to play high because the plane of the handle is low and if I just push straight in it pushes only the bottom of the mouthpiece in.

I think part of it is getting used to the handle. And I think another piece of it is that I'm going to have Jeff cut the pipe that is parallel to the slide and make the handhold closer to my chest. We'll see if that works. It may also pay off to figure out how to connect the handle to the bell section - I find when I play holding the bell section the pressure issues are much more manageable.

Anyway, as you can imagine there were plenty of funny comedy jokes when I brought it in to rehearsal today. Andrew Cleaver had about four of them. Brian and Kevin just laughed at me. Brian said "I can't possibly take you seriously with that thing on your horn" and I said you've never taken me seriously, how is this a change? They got a big kick out of it and made me play something to send to Sig who is at home editing. As you can tell I got no face.

And I came home tonight and am practicing...

Friday January 11, 2008

Happy New Year!!

OK, sorry I haven't done an update, my hands have not been great and it's not fun to type...

In any case, we left off just before Linda and I and the kids traveled to Texas for a quick visit to see relatives. Had a great time down there, it was great to see everyone! My arthritis symptoms down there were about the same as they had been the proceeding week, which is to say that all the same stuff hurt but only about a fourth as much as it was before they started me on the Prednisone.

We flew back this last Saturday and I must have picked up the nastiest stomach virus ever because I got about as sick as I've ever been on Saturday night, and ended up in Anne Arundel Medical Center at about 5 am Sunday morning - they put about 3 bags of fluid in me as well as some intravenous anti-nausea medication. Linda brought me home that afternoon and I slept the rest of the day, and by Monday I actually felt pretty good albeit real weak and shaky. What an experience.

Got to my appointment with Rheumy on Monday. He looked at my right knee and my hands and wrists which are my real problem spots these days and asked me a bunch o questions. He was really surprised that I was still in pain. Typically, rheumatoid arthritis patients respond to doses of Prednisone as if it is magic, and he was surprised that it had not knocked my symptoms out completely.

Then he stood up and said "Well, we just don't think you have Rheumatoid Arthritis, however you have some kind of systemic inflammatory disease. So at this point we're calling it Inflammatory Polyarthritis. But that doesn't mean very much because you do appear to be pre-rheumatoidal and are in transition, and we are treating what you have the same as we treat RA anyway."

The key apparently is the onset - RA starts in the small joints of the hands and spreads to large ones, my thing started in my large joints and has spread to small ones. Frankly the labels don't matter. I can hardly count myself as lucky that it's hitting me in large joints which cause me not to have difficulty walking or playing trombone, all that matters is whether people can figure out what's up with me and figure out a plan to keep me at a level where I can function. That's it.

So the plan is that he upped steroid dose to a split dose of 20mg in the morning and 20mg in the eve, and I call him next week to see if that worked. And he said I come back in a month and then that's where they start with the next anti-rheumatoidal medication, which he named as Methrotrexate, a drug used in the treatment of cancer and autoimmune drugs. Hopefully that will work better than Plaquenil which had no effect I could tell.

But I'm starting to wonder if any of these things will really work. The sledgehammer known as Prednisone has certainly knocked the pain down about 80% however even at the high dosage I'm on there's still a lot there especially in my hands and wrists.

Chiro is on his own track. I saw him on Monday and he said he did a lot of thinking about my situation while I was out of town and now he's wondering if I have a parasite. He knew I went to Japan in the 90s with the band and got really sick, and he also knows we were in the Middle East in '02. So he wants me to get a consult with Infectious disease doc when I see PCM on the 17th.

Then today he did all this muscle testing and he said I'm real weak with homocysteines, which are a body waste in the bloodstream. I had already gone off wheat in Texas because another chiro that I saw thought homocysteine poisoning might be worth looking into and he thinks wheat allergies cause elevated homocysteine levels. My chiro found some other test results but instead of recommending a supplement he said he knew a biochemist at the pharmaceutical company and was going to call him and have him review my case. Chiro is something else, let me tell you.

So, for wagering and entertainment purposes, here is my list of current doctors:

Primary Care Manager
Air Force Chiropractor
Civilian Acupuncturist
Air Force Acupuncturist
Navy Rheumatologist
Air Force Internal Medicine Doc
Air Force Family Practice Doc
Air Force Gastroenterologist
Navy Infectious Disease Doc
Civilian Biochemist (?!)

For those of you keeping score at home, that's ten (10) doctors. A good round number.

Tomorrow morning I pick up my horn from Jeff Bonk. He says he'll have it ready for me to start playing. I'm anxious to see what he has come up with. But at the same time I am a bit afraid - in the time since we came up with the plan to address my inability to get my left hand high enough to get the horn to my face, I've been having some left elbow problems, in that occasionally my left elbow pops when I extend it and it hurts when it pops.

And my other fear is a common one among players - today marks the 40th consecutive day I have not played trombone and being off the horn that long makes any player wonder if they'll be able to get "it" back. It's purely a phobia and an irrational one at that.

On either front I'll find out soon. Peace!

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