at the Water's Edge


Living life and learning all I can along the way!

Rheum Update: LAWs, Eyes, and NYC

Ahh..this is the life!
I've been thinking for a while now that I need to write up an RA update, but things have been busy around here, and I just haven't had time!  Some of my "school year" commitments have subsided now that it's summertime, but warm weather also means we are traveling more and I'm spending more time outdoors, particularly working on and enjoying my yard and garden! In fact, it's so nice out that I'm out on my deck sipping on a frozen drink as I type!  Oh, right, we were talking about RA... 


First, let's start with the physical therapy.  I ended that probably 
about a month ago now.  My physical therapist gave me lots of exercises that I can do at home to help mobilizing and strengthen my wrist joints.  In my previous update, I mentioned how I was able to gain 20 degrees or so in my range of motion (mostly flexion and extension -- the lateral movement is still difficult for me).  That's about as good as it got.  Judging from my x-rays, my guess is that I can only bend the joints so far until one bone gets stuck on another.  The good news is that with the exercises I am able to help my wrists regain a little functionality and hopefully will continue to build strength.  I have therapy putty, rubber bands to help with strength and now the knowledge of how to slowly stretch my wrist joints. 

Therapy putty! Dual purpose -- also works like a stress ball :)

On a bad LAW (little arthritic wrist) day, I can gently work to mobilize the joints and help them get to a more functional state.  Although I still can't do a real push-up (I could probably do a finger-tip one!), I am happy with the progress made through physical therapy and with what I learned during the experience.

Secondly, I wanted to mention my recent visit to the ophthalmologist.  After "the big switch" to Humira last year and the slow progress toward improvement, my rheumatologist had me add hydroxychloroquine (Plaquenil) to my treatment mix.  I had tried it briefly in the past, but had never given it a real go.  I do think that it is helping in combination with the Humira -- as my previous chart indicated.  However, over time, Plaquenil can cause damage to the eyes, so patients are encouraged to visit the ophthalmologist yearly to check for any changes.  From what I've read, vision loss is very rare in the first 5 years of use, but after that, there's about a 1% risk of developing damage (there's some great information on hydroxychloroquine and eye health here: http://www.eyeupdate.com/plaquenil-updates.html).


Yep, that's my eye.
I went to the ophthalmologist this week for the first time in about 6 years -- and it's been over a year since I started on Plaquenil.  It was definitely time to go in.  I had to do a visual field test, which I'm not sure I've ever had to do before.  They tested each eye, and I had to press a button whenever I was able to see a little red dot appear in my field of vision.  It took forever, and I think I got a little trigger happy at one point, and we had to start over!  Eventually, I sat down with the doctor and we had a brief discussion about why I was on Plaquenil, what my dosage was, etc.  This is where I expected things might get interesting.  I told him my dose: 400mg.  He looked at me and said, "How much do you weigh?!"  Then he quickly apologized for asking so bluntly, realizing that may be a sensitive question!  I told him my weight and asked if he thought the dosage was too high.  You see, a while back a friend of mine with lupus informed me that Plaquenil should actually be dosed based on weight, to help avoid any rentinotoxicity.  I told the doctor that I had done the calculation before and it seemed my dose might be a bit high.  He asked what number I came up with, but I couldn't remember.  He redid the calculation for me.  It works like this:

Daily Dose Should Not Exceed: 6.5mg of hydroxychloroqine per kg of body weight

Using that calculation, I should not be exceeding 345mg/day.  But I take 400mg/day.  I asked the ophthalmologist if I should reduce my dose, and he told me that that's really a decision for my rheumatologist (the prescribing doctor).  However, he said that he would send a letter to both my rheumatologist and my PCP, and that I should follow up with my rheumatologist if I do not hear anything from them.  So, I will probably give them a call if I don't hear from them next week!


Otherwise, I have actually been doing really well rheumatoid-wise!  I had the chance to meet up with some fellow RA patients a few weeks ago in New York City at the first RA Blogger Summit put together by Pfizer, Inc.  Pfizer invited a group of RA patients out to their headquarters for a unique opportunity to provide some feedback on their new campaign (RethinkRA.com) via a focus group style roundtable discussion.  You can read about the event on my friend Shannon's blog: http://rheumatoidpatient.blogspot.com/2013/06/rheumatoid-arthritis-blogger-summit-and.html


Here's the group of patients Pfizer flew out for the meeting,
along with Seamus Mullen, award-winning chef who is also an RA patient
& is working with Pfizer, doing cooking demonstrations across
the country: http://cooking.rethinkra.com
Besides meeting with Pfizer, it was wonderful to catch up with Shannon, along with my friend Lauren who works in NYC -- plus I got to meet some other rheum-mates in person for the first time, which is always an amazing experience!

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ABOUTME

Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Happy Gilmore. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!

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