Wednesday August 20, 2008

Ten Steps Forward, One Step Back

Over the last month I have felt fantastic!

Up until this week I have had no bad days - I've been to the gym 15 times in the last 24 days and have gotten my wind and some strength and a lot of flexibility back.  No setbacks from the gym visits!

So last week Rheumy doc instructed me to cut my Prednisone dose in half from 10 to 5, and to do it again in two weeks, again two weeks after that, and then cessate entirely beginning September 22.

I am telling you I will be happy to be off of long-term, high-dose Prednisone therapy.  It is a wonderful, terrible drug.

The side story is that I am sick from Prednisone withdrawal; my muscles ache and my neck is out big-time and I'm extremely fatigued.  But that comes with the territory and I am truly overjoyed that my joints have not flared up as a result of the taper.  Knock on wood.

The last year has felt like I stepped into a time capsule.  It's like it was some kind of throwaway.  It's just really odd to remember that just eight months ago I couldn't even walk.  

I'm still recovering in terms of getting ahead on my work; I think I did a pretty good job ensuring that all of the responsibilities of my job of Director with the Note were taken care while I was sick, but I just wasn't able to get out in front in terms of planning for new projects and musical directions like I want to.

The main thing is that through those miserable 12 months I'm pretty sure I managed not to make my family and everyone around me miserable.  So along with all of the gains in perspective, that's the best thing I take away from all of this.

Many many thanks to all of you who have given me your strength and thoughts over the past year.  Couldn't have done it without you!

- Big Joe

Thursday July 24, 2008

New Diagnosis...

Helloo!

We got back from our UK trip last week (you can see the video, up on this site).

My body held together MARVELOUSLY!  And in face of LOADS of walking, at least in the last five days of the trip in London.  I estimate conservatively that I walked at least three miles per day in London.  Some days I'm certain I did six or seven.

I also rode horses in Cumbria with my daughter Josette.  My knees felt like they were going to explode from the second I got on to the second I got off but I did it!

(proof)

Anyways, we came back and I had an appointment with Rheumy the next day.

Dr. O'Brien was back from his deployment.  He examined me and decided I look pretty good though not perfect.  I told him that I was not quite noticing any changes as a result of Humira but that it was tough to tell because I felt pretty good but that could be because of the Prednisone.

He agreed and told me he wanted me to stay at the current 10mg/day Prednisone dose for another month since due to my history there was a very good chance that I would immediately start to flare if we started the taper now before Humira had had it's full 2-3  months of time to start working.

He also told me that based on my visit a few months ago my blood numbers have changed and I now have full blown Rheumatoid Arthritis.  Which of course doesn't change how I feel or my treatment plan.  All it changes is it makes it easier to talk to people about it and it possibly changes some factors regarding my eventual retirement from the Air Force.

I guess there's news on that front as well.  My primary care manager finally agreed to place me on profile from the Air Force physical training program as a result of my symptoms -- but only if I agreed to accept a medical examination board.  Of course I agreed, I tried working out in April and it just made me worse plus rheumy said "bad idea," working out on inflamed joints makes them worse, and every day my joints are  inflamed is one day closer to having joint replacement surgery.

I completed the narrative a couple of months ago, I still have not heard anything and Rheumy doc said they have not contacted him to write an addenda. 

The result of the board could be nothing, it could be a recommendation to limit my duties, or it could be a recommendation for medical retirement.  But based on the fact that I have managed not to miss significant work I don't think that's going to happen.  I'll let everyone know if I hear anything more.

Last but not least, the really exciting news.  Over the last week (really, since the last rheumatology appointment) there has been a noticeable improvement in my joint function, especially in my arms.

The range of motion in my wrists is about 75 degrees extension and almost 90% flexion with much less pain.

In fact I have felt comfortable on the elliptical trainer and (drum roll) even went to a yoga class last night.  Don't laugh.  Yoga is ridiculously hard if you have RA.  Two of the basic moves of yoga are downward dog and plank:

both of which require you put a lot of weight on extended wrists.

Well, that's not going to happen anytime soon, so I did everything but these poses last night.  I am trying to remember that RA is not like injuries, you don't incrementally push the joints to achieve range of motion and strength.  You allow the medication to do its work and THEN you can start to exercise the joint.

So anyway I am very excited (and sore!).

More later, people! 

Friday June 6, 2008

Took my first injection of Humira on Monday - have not noticed any immediate effects however doc says it takes 2-3 month before you notice anything.

In the meantime he put me back up to 10mg Prednisone daily and told me to just stay there and stop whining.  Alright I made up that last bit.  

But he did indicate that it's important to keep my priorities straight.  Per Terence Dwyer, when one allows the inflammation to continue (even in favor of taking less Prednisone, admittedly a toxic drug when taken long term), they are doing permanent damage to their joints, which can then spread into adjacent organs.

In fact I read a recent NEJM study that said that 29% of Rheumatoid Arthritis patients who suffered continued uncontrolled inflammation weren't even alive in ten years.  (sorry, no cite)

The result of the drainage/knee, ankle injections and added Prednisone is that most of my joints have subsided considerably with the exception of my left hip, which has inferred as muscle spasms in my lower left back and also in my bowel.

But my ankles and knees are about 90% pain free so I'll take that.

In other news the Air Force is boarding me, that probably occurs sometime this summer so we'll see the outcome of that.  My hope is that they'll determine that I can continue doing my job.

Friday May 30, 2008

Hello all!

Lots of news on the medical front.

As I have continued to taper my Prednisone dose, my average pain level has risen.  I recently started a chart of my maximum pain level each day along with my Methotrexate and Prednisone dose:

(Green is Prednisone dose, Purple is Methotrexate, Orange is Humira, Red is pain level from 1 to 10.  Click on the chart to see a higher-resolution version.)

This last monday, I went from 7.5mg per day to 5 mg per day, and as a result I became super fatigued and feeling sick on Monday & Tuesday, and then super flared-up on Wednesday and Thursday.  Both my ankles, right knee, wrists, left hip have been flared up and my left lower back has been spasming along with my left buttocks.

I finally figured out that I needed to call the Rheumatologist; I got nurse Stratton on the phone.  Let's just say Ms. Stratton was not happy with me for letting it go this far.  She listened to my situation and then told me to come right in.  She said my doctor, Dr. O'Brien was deployed but she would find somebody to see me when i got there.

Drove to Bethesda right away and moseyed down to Rheumatology.  It was quite a hike; i knew it was coming so I had brought a crutch to try to minimize stress on my ankles.  Checked in, I was called back and was delighted to learn I would be seen by the 0-6 head of the department (and the highest ranking rheumatologist in the U.S. military), Dr. Terence Dwyer, along with his intern.

Long story short, here's the result of the appointment:

• They drained about 4 ounces of fluid from my right knee,

• They injected my knee and both of my ankles with cortisone (does not feel good)

• They told me to go back up to 20mg Prednisone and then once the inflammation is reduced do a quick taper back to the 5-7 area.

• We decided that Methotrexate is not getting it done, and it was determined that I would start a new medicaiton to supplement Methotrexate, and anti-TNF drug called Humira (Adalimumab).

• Blood drawn for labs, a urine test and a tuberculosis test (that must be negative in order to start Humira.)

I go back on Monday to get the result of the TB test, and then back to rheumatology to get the patient education and first injection of Humira.

This particular medication you inject once ever two weeks.

I got the impression from how the doc was talking that this was an expensive medication.  Lo and behold, I get on the net when I got home and this stuff is, get this, a whopping $1,400 per two 40mg synynges!

If there was ever an example in favor of socialized medicine, this is it.  We have a neighbor with rheumatoid arthritis and they do not have health insurance.  To think that she simply does not have access to the best medicines and might therefore suffer because of it, to me is an absolute travesty.  Thank goodness for the Air Force.

I'll post in next week to let ya'll know how I have responded to all of this.  Ciao.

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