Monday, April 26, 2010

Page 2?

This is my update to my new chapter.   I had my appointment at my Rheumy's on Friday.  As I expected- Methotrexate is no longer in my regimine and the folic acid and Enbrel are gone as well.  She kept me on my tramadol, gave me back my Flexeril and added prednisone for the time being.  This is as a holdover until I get started on Orencia infusions. 

About Orencia- it has it's good and bad points.  The good points are that there are supposedly very little side effects.  A little nausea and stuff on the day/day after are to be expected but no major effects and it doesn't touch the liver.  Once I get started and get my little push- it will be once a month- that will be nice!  Also- no MTX and no Enbrel means I no longer have to inject myself in the stomach twice a week.  I have one dose of Enbrel left and that will be the end of that.  On the negative side- in order to get dosed up- I have to have an infusion every two weeks for three visits before we go to a month- and it is VERY Spendy!  Because it is done in- office it is processed through my medical insurance rather than my prescription insurance.  That means that (for me) it is a 20% co-pay (or 200-300 dollars) per infusion.  YIKES!  I am just incredibly grateful that I have insurance.  I cannot imagine trying to do this without.  I am also grateful that Bristol- Myers has a program that will help with the co-pay for the first six months if I qualify.  I am not counting on it but I am sure that it is boon for people who do.  It also is a long appointment.  I have been told that I will be in the chair about two hours per visit- and until I know how I handle the drug- I have scheduled it for Friday afternoons.  What a way to start the weekend-lol!  I just hope that they let me nap in the chair! 

On another note- I have been issued my handicap parking plate and have an appointment on the 10th with a PT/OT for mobility aids.  This is really, really hard for me.  I have been fighting and fighting this disease.  I have made it a part of my life and I have learned to live well with- or in spite of my RA and Fibro.  By putting that plate on our cars- I am allowing myself to be labeled "disabled".  That takes the wind right out of my sails.  The best way I can describe it is feeling defeated.  I don't need the close spaces all of the time and most of the time I park in the middle or far end of the lot so I can get a little extra exercise in.   The reason for doing this now is that my last trip brought me a real setback and my job now requires travel three or so times a year.  More than anything though is that as I am being taken off a proven drug and switching up to something we don't know- we have to expect the worst and hope for the best.  If I slide back to my pre-MTX days- I will be ready to kiss that handicap space when I park. 

So that's where we are.  I am desperately trying to wrap my head around the "labeling" issue and am feeling pretty positive-mixed with a little terror about the med switch.  If any of you have experience with Orencia- I would love to hear about it!

1 comment:

Anonymous said...

I haven't any experience with any of the biologics (yet, knock wood, please?). But I absolutely understand your concern, Jules.

Let me say here that I'm VERY glad they did that biopsy and that they know what, exactly, was causing the problem. Yay for modern medicine! Yay for health insurance! Yay for alternative drugs! I'm so glad you're going to be OK.

As for the "disabled" label: Please don't feel that it makes you any less the strong, bright, animated and courageous person that you are. That placard and license plate symbol are merely tools that will allow you to live well with a disease that's incurable. You're doing all you can to fight it; you're doing all you can to live well and with optimism every day. That makes you a hero in my book, not some lesser sort of human being.

My post today on Rheumablog refers to blind writer, poet and teacher Stephen Kuusisto's take on "disability." I couldn't think of anything profound to write myself, so I linked to his post. It's well worth reading, and I hope it will give you hope as you deal with this "new chapter" in your life.

I hope the Orencia works very well for you so you'll only rarely need that placard.

Big hugs to you,