Thursday, November 3, 2011

End of the Intro and the Beginning of the Journey

Wow, its been almost a year since I last posted.  Amazing how time flies.  My pre New Year's Resolution Resolution is to update this blog once a week.

SO, my last post ended with me getting off the Methotrexate and getting PredniSONE down to 2.5mg every other day, then talking about the tics.

Ah, the tics.  The summer of 2008.  They came on slowly, so slowly that I didn't really notice them or pay attention to them as much as maybe I should have.  They were shudders.  They would come in from the right or left side of my head.  I could feel them coming on, but I couldn't do anything to stop them.  They would hit, I would shudder or spasm pretty bad real quick, let out a shudder sound like I was cold and that was it.  I never really thought anything about them.

But my wife did.  She started noticing them more and more.  To me they were a benign nuisance, just something that happened.  They didn't hurt, they didn't keep me from doing anything, they just came on from time to time and felt funny.  My wife asked me to ask the RA doc about them and he was instantly concerned.  Apparently a side effect of Enbrel is brain lesions.  GREAT...  My first thought was that my RA was turning to MS.  This is not good.

I was referred to a Neurologist.  This was a very strange visit.  All of the RA docs I had been to have very modern offices with modern equipment.  This neurologist was Old School.  His office looked like a dusty library and all he had was one of those eye things they use at the Optometrist and one of those knee hammers they use for reflexes.  He checked my reflexes and did some touch-feely stuff with my neck and then checked my eyes.  I did have a shudder at his office, which was nice, but he didn't really do anything about it.  He took some notes, didn't say much and told me he would send his findings to my RA doc.  That was a very strange visit.  Apparently he didn't see anything glaring and sent me on my way.

My RA doc calls me a couple weeks later and says he wants to see me.  Apparently the notes he got from the neurologist concerned him.  Doc recommends that I go off the Enbrel and back on the Metho, I blatantly refuse.  No way I'm going back to the Metho...My wife and I were trying for number 2!  I stop the Enbrel and go in for the tests he recommends.  I believe it was called an Arthogram MRI, where they put dye in my bloodstream via IV and then take MRIs of my brain.  I had to have 2 on 2 seperate days.

Now, I'm not claustrophobic,  but man...being put in a head cage like Hannibal Lector and stuck in a tube for 45 minutes at a time while being asked to not move was a challenge.  Keeping from freaking out in that tube was an accomplishment in itself.

I waited around for 2 weeks for the test results, and good news, no lesions.  But no answer on the shudders.

Next Post:  Figuring out the shudders.

Tuesday, January 4, 2011

Intro, Part IV

.....And we're back.

So when I last posted, I was rehashing my journey from finding out that I had RA and then going on to messing with my own meds to see how things worked.

After I became disenchanted with my RA doc at that time, I started doing some of my own research and found a guy here in Omaha named Dr. James O'Dell who is a big RA research doctor.  He is the Section Chief of the Rheumatiod Arthritis Investigational Network (RAIN), which is a national research network for RA.  I decided to switch docs.
O'Dell is a great guy, and he's a good doc, however, I was not happy when I went there and he took a look at me and said, "Well, everything is looking good, let's keep going with that you're doing."  Grrrrr.  Not exactly the answer I was looking for.  I was looking for the golden bullet and didn't get it.  No big deal.  I'll just keep messing with my meds on my own again.

This turned out to be a bad idea.  I decided to start alternating my Methotrexate and Enbrel doses to every other week.  This did not work.  I flared up and it wasn't good.  I went back to my original stack and stayed on it until I felt better.  That lasted until my next visit 2 months later.  I told him what I had done and he basically said I'm on the meds for a reason. 

In the meantime, my wife and I decided we were going to try to have another baby.  In my research, I had found that Methotrexate is used for abortions and can cause birth defects, so I consulted with the RA doc and he agreed, saying that I'd want to be off of the Methotrexate for 3 months if we decided to try, and that we could try some other meds while I was going off of it.  His recommendation seemed a little nonchalant and I had read in some published materials that it is estimated that Methotrexate can stay in your system for around 6-9 months.  I decided since I wasn't the one carrying the baby, I wasn't going to screw around with some people's recommendations and I was going to go off of it for 1 year prior to trying.  It was a bolstering reason to get off the Metho for good.  If I could go without it for a year and be OK, why couldn't I be off it for good?  I blamed the Metho and PredniSONE for my weight gain and that was pissing me off too.

I dropped the Metho (and Folic Acid) in January of 2008 and added Hydroxychloriquine (Plaquenil).  At the behest of the RA doc, I paid close attention to how things were going. 

This turned out to be a great idea. The summer of 2008 was a great summer for me.  2007 had been such a frustrating year.  I was still not convinced I actually had full blown RA, I thought I had something else, as in I didn't really have all the classic symptoms.  Symmetry, swollen knuckles, all that stuff. After going off of the Metho I went into O'Dell for my first checkup in March.  Everything looked, good.  I had a lot of energy, I wasn't stiff, and I seemed to feel generally happier.  I asked about dropping the PredniSONE.  He agreed to go from 5mg down to 2.5 daily.  I went 2 more months and had my May checkup and everything was great.  Enbrel once a week, Diclofenac Sodium, Hydroxychloriquine and the little tiny dose of PredniSONE.  I felt great.  I started getting back into the groove, I was playing golf again, although I could only get through 9 holes before my wrist hurt too bad from the iron shots.  I got back on the bike and started riding to work (5 mi each way) about once a week and going for recreational rides on the weekends.  I also got back in the pool and started swimming again.  This was huge.  I had been running on the treadmill and riding the elliptical, but both seemed to hurt my knees, probably because of the RA AND the extra weight.  Swimming gave me the best of all helped the range of motion in my shoulder immensely, and was a great cardio workout without beating my joints up too bad.  I had found my bliss.  Bike rides when I felt good and swimming when I didn't.  I could do it all and I felt better than ever.  I ended up losing 53 lbs in 2008, I went from 240 down to 187 and I felt great.  At that point I was invincible.

I went to the RA doc and showed him my progress at my October checkup.  He was impressed and pleased with my progress.  He agreed that swimming was probably the best thing for me and to keep it up.  I asked about getting off the PredniSONE completely and he was hesitant, but we settled on 2.5mg every other day for 3 months and after that if I hadn't had any flares I could stop it.  I was totally pumped.

But...that's when the tics started happening.

Again, to be continued....

Friday, December 31, 2010

Intro, Part III

So after doing my own research, and my mom asking all her friends (the neighbor works at a hospital) I get the name of a guy who is "the best in town".  I set up an appointment, and my wife and I go in.

He seems like a nice down to earth guy, a little spastic, but he's a doctor, so I guess that's OK.  He takes a look at what I'm on and says:  "Looks good to me, let's keep it going like that".  Hmmmmm..... "Well," I tell him, "I've been on this for a year and nothing has changed by my pant size." 

The drugs had taken their effect on me.  Weight gain, thin hair.  I have blond, fine hair as it is so when my hair thins its a big deal.  Plus I'd ballooned to 230 lbs (I'm 5'9").  I'd been on the stack for a year and thrown my overall health out the window to combat the RA.  I was hungry all the time and my diet had suffered.  During that first year, my wife gave birth to our first daughter and I had put on the sympathy pounds.  The Methotrexate gave me a malaise feeling all the time.  I ate and ate, and worked and worked (gotta have insurance to pay for the Enbrel) and took my meds.  I got bigger and worse off.  My mobility had suffered greatly.  I could barely lift my left arm above the shoulder, and my right wrist was killing me after a day at the office building websites.  If I did get off track on my meds, I could barely pull a shirt over my left arm and had problems buttoning my shirt.  This was waaaay not cool.  I was spending all my time trying to pre-fill my "needs" in life to make my body comfortable enough to fight the RA.  This went on for another year.  It totally backfired.

After ballooning to 50 lbs over my regular weight, taking my meds for almost 2 years, my symptoms were no better than they were before and my entire body felt like crap.  I was carrying too much weight and that was stressing out my other joints and my back.  Every time I got a pain I thought the RA was spreading.  It was a vicious cycle. 

Cut to the next RA doc visit.  Time for X-Rays of my joints to compare with what I had done at the hospital.  The verdict?  Good and bad.  The wrist looked OK, even though it was still inflamed.  The shoulder, however, was deteriorating.  The sinovium, the inner lining of the joint, inside the capsule, was wearing away and now I was dangerously close to being "bone on bone".  The new RA doc was visibly upset about the issue, it almost felt like he was taking it personally.  He tells me my joint is slowly grinding to a halt and that the "disease" had started to take its toll.  This was not good news.  Even worse news....he said not to change my meds.  Really?!?  So let me get this straight.  My shoulder is deteriorating, but you aren't going to do anything about it?  Can't we do some kind of scope to clear out scar tissue or something?  Nope.  Just keep the status quo.  Grin and bear it. 

I won't settle for that.

I started doing my own research along with some soul searching.  Basically everything I read said the same thing the doc said.  Keep it on and "manage" the RA.  I don't want to manage it, I want it to go away.  Then on my next visit, I was reading a Time Magazine article in the waiting room called "The dangers of Inflammation" or something like that.  It was more or less about how inflammation causes heart attacks and what people could do to reduce inflammation.  This sounded familiar.  I kept on reading.  It said that diet,  exercise and some environmental factors were key to reducing inflammation.  This piqued my interest.  What kind of diet reduced inflammation?  What were these "environmental" factors that contributed to RA?  After another ho-hum, what's your pain level,  keep on keepin' on visit to the RA doc, I decided to delve more deeply into this inflammatory issue.

One of the most profound statements I found went something like this:  "Inflammation can be a result of the body fighting off too much of what it needs to function properly."

Apparently, too much of a good OR bad thing is a bad thing.

I digressed to a concept that I had heard many times over.  Minimum Effective Dose.  (side note, its funny, but author Timothy Ferriss details this exact concept in his new book 'The Four Hour Body', where the Mininmm Effective Dose is the golden zone).  Too much of a good thing is bad. The thought I had was that the meds I was taking were overkill, they were having minimal success and were still causing unwanted side effects, especially weight gain, which I blamed for my joints getting worse.

Mind you, I am not a doctor, I'm a Web Developer.  However, I started to play around with my meds, which at the time were:

1 enbrel shot per week
8 2.5mg Methotrexate Tabs once weekly
2 OTC Folic Acid tabs daily
10mg PredniSONE daily
150mg Diclofenac Potassium daily.

First I dropped the Diclofenac down to 75mg daily.  This was the anti-inflammatory of the bunch.  I decided to mess with this first since it wasn't a DMARD (Disease Modifier, a la Enbrel and Metho).  I quickly realized that I could get by with 75mg per day.  OK.  That works.  Second on the list, PredniSONE.  From my research, this seemed to be responsible for my overactive appetite and also my weight gain and water retention.  I cut it in half to 5mg daily.  I stayed with this regimen for one month.

The results were negligible.  I was saving cash on my meds, reducing my Minimum Effective Dose, and having no drop off in treatment results.  Interesting.  I brought these findings to my RA doc.  He gave me a perplexed look, told me I need to trust him, that he knows what he's doing and that he can't guarantee my RA "management" if I don't follow his direction explicitly.  He emphatically advised me that the PredniSONE (steroids) were responsible for keeping my joint from deteriorating and that I needed the 10mg daily.  Well, I got news for you fella, the damage is already there, and it doesn't seem to get worse.  I'm doing it on my own and its working.  I felt so empowered.  I left with both some personal pride in that I showed the MD up and also some sadness in that I felt he was wasting my time.  I told him I was going to keep this regimen for 2 more months, and we'd come in and get another X-Ray on the shoulder to determine whether the damage was accelerating.  With the disapproval of my RA doc,  I left and continued my experiment.  After 2 more months, the results were the same.  The pain wasn't worse, but it wasn't better.  But the X-Ray was the kicker.  My joint damage had NOT progressed a single bit.  I realize that 3 months is a small window, but hey, its still a window and I was encouraged by my progress...I was also discouraged with my RA doc.

To be continued.

Thursday, December 30, 2010

Intro, Part II

Picking up where we left off last night, I had just got a huge shot of cortisone into my left shoulder.  That was fun.  I went back two days later and got another cortisone shot in my right wrist.  Good times.  I felt good and pain free for about 3 weeks.  Working at the bar, working during the day, it was all good.

Then the pain came back.  I went back to the ortho guy who told me all he could do was shoot me up again, so he did, the shoulder and wrist two days apart.  That lasted about 3 weeks.  Pain was back.  I went back and he started doing all sorts of tests on me.  I went to the hospital on 2 separate occasions for two of the weirdest tests I've ever had done.  The first was a bone scan, where they strapped my arm down to what looked like an overgrown snare drum for an hour while I sat and stared at the walls.  The second and more interesting one was the Arthrogram MRI.  This was a trip.

Cut to the lab...I'm in a room by myself, divided from the lab techs and the MRI guy who looks like a cross between Harry Caray and Gilbert Godfried by a big huge window.  My wrist is strapped down over a rubber pyramid and has a bullseye right over the middle of my wrist with some sort of contraption that looks like a drill press looming over it.  He then proceeds to send in one of the lab techs, who is younger than me, to administer the "fluid".  She sticks an IV into my wrist and starts injecting some dye.  It was the most crazy feeling ever.  It felt like someone was pouring a glass of water INSIDE my hand.  Weirdest.Feeling.Ever.  After that Harry Godfried starts the procedure, which is the needle drill press lowering right into the center of my wrist from the top.  Craziness.  After acting tough throughout the whole thing, they come back an tell me the results were "inconclusive".  Awesome.

So the next week, I take the results to the Rheumatologist I was referred to.  He tells me I don't "present" normally, as in I only have symptoms in my right wrist and left shoulder.  Usually RA presents symetrically int he same joints, and even then its usually in either big joints or small joints, not one and the other.  He runs some tests, tells me that I have "Asymmetric" RA and prescribes my first stack:

1 Enbrel shot per week
8 Methotrexate pills per week
20 mg PreniSONE daily
150 MG Diclofenac Potassium daily
Folic acid to counteract the Methotrexate
Mobic to combat the inflammation.

Not Cool.  I took my meds like a good boy and came back in a month.

Saw the RA doc, no change.

He ups the PredniSONE, which from what I hear is a bad thing.

Diagnosis....this sucks.

So here we go with the round and round with the Doc deflecting my questions that I have RA with the fact that my Rheumatiod Factor is high, thus I have RA.

I went for about a year to this guy before I decided:

A:  I don't like him
B:  He's treating me like a statistic.

Research begins.  I start looking for a new Rheumatologist. 

To be continued...

Wednesday, December 29, 2010

Intro, Part I

Well, here we go. I set out to blog about my plight with RA, which started quite a long time ago. Here's a little bit about me:

I'm Matt, I live in Omaha, NE. I'm 33 years old. I'm married with 2 daughters. I love the women in my life, hockey, skiing, golf, hiking, biking, camping, fishing, hunting, softball, football, baseball and cooking.

I have RA. And it sucks.

I was finally diagnosed with RA at the tender age of 26, after spending nearly a year as a human pincushion and lab rat for half the doctors in Omaha as they ran test after test after test and couldn't come up with anything. So, after failing to categorize whatever it was that hurt so bad, they said "You have a high Rheumatoid Factor, so I guess you have RA. Here's a referral." Really? I didn't buy it.

Time to get in the Way Back Machine. In the year 2000, I was coaching a pee-wee hockey team with a couple of my friends, and we were getting our team ready for the State Championship. Our 14 year old goalie starts popping off about how he's superman and can stop any shot, any time. I decided to put the little turd in his place and started launching big boy shots at him. He stops the first couple, then I accidentally nail him right in the face mask. He gets up, smiles at me and said "That all you got?" So I just kept going. I spent almost our whole hour of ice time firing all kinds of shots at him. At the end of the practice I noticed my (right) shooting wrist had started to hurt pretty bad, like it was locking up. I'm a hockey player right? Tape it up, get back out there and it'll go away. Well, 2 days later and I couldn't even button my shirt or hold a spoon. Luckily the State tournament was the following week and I didn't have to do any more shooting, so I wore a brace and told the kids that I got in a fight and that they should see the other guy. I went to my ortho guy who had formerly reconstructed my right shoulder (another hockey injury) and he wrote a script for anti inflammitory pills and a full on wrist brace. I took my meds like a good boy and walked around looking like a rollerblader for 2 weeks until it went away.
Only problem was, it never really did. After that day my right wrist was always a little swollen and clicked alot when I rotated it. One of the friends I coached with moved away to the desert and my other friend took over a business so we all quit coaching hockey. (BTW - we won the Cornhusker State Games Pee Wee Hockey tournament that year, BOO YAA!)

Fast forward 2 years waaaaay back to 2002. I can't hit the batting cages anymore before softball because if I do can't hold onto the bat during the games. This sucks. My timing is all off. Then I have to switch to catcher because my wrist hurts so damn bad after the second game I can barely get the ball back to the pitcher. Deciding I was now a weak link on the team, I decide to hang up the cleats. I had a good run, 8 years of softball every Wednesday night was starting to get old anyway, right? At the end of that season, I propose to my girlfriend. All is good. Except for my wrist.

I was working as a Web Developer during the day and slinging drinks (bartending) a couple nights a week, which I had done for about 4 years. Now with my wrist hurting, making it harder to open bottles, lift kegs and mix frozen margs, I start overusing my left arm, using it to grab everything. Then that left shoulder starts to hurt, not muscle pain, but the same hurt as my wrist. WTF?

I go back to the ortho guy and tell him the meds aren't doing much for my wrist and now my left shoulder hurts. He says we'll try cortisone. To my shock he pulls out the biggest damn needle I"ve ever seen and proceeds to directly inject the cortisone into my left shoulder. That HURT. He totally eyeballed it too. He felt around the outside of my shoulder, marked the spot with a ballpoint pen, sprayed some cold stuff on it and said "You might not want to watch this". Then he tells me to come back in 48 hours so he can cortisone up my wrist. I say OK.

My arm felt dead, but the pain was gone. For a while

its getting late, I'd better hit the rack so I don't flare up. I'll finish this story tomorrow.