Saturday, January 8, 2011

Walgreens has nothin' on me!

I saw my rheumatologist yesterday.  It was time for my quarterly check-up and I had my usual list of concerns.  Being in the midst of our "Rush" period and especially Fall going into Spring where we have about 4 weeks to complete what we complete in the whole summer-means that I am working insane hours and am on my feet lifting, hauling, walking, carrying for 10+ hours a day.  My hips and back have been screaming in protest.  I think it was Tuesday or Wednesday that I posted on my twitter feed that there was a hot poker sticking in my back- the problem being that it's invisible.  In addition to that my shoulders are sore enough that it's hard to sleep on and when you have mild insomnia anyway; the extra loss of sleep makes me cranky. 

I also expressed to my rheumy that I am not convinced that the Orencia is working for me.  When we pulled (more like yanked) me off of my methotrexate, the first course to head off a flare was 10mg daily of prednisone.  It works.  We found this out the hard way when I accidentally let my RX lapse and it took almost a week to get the authorization and fill.  At the end of that week I was in such a flare that just getting out of bed took all of my effort.  As I have now been on prednisone since April, my rheumy wants to taper me off so we have been adjusting the dosage.  When I went from 10 to 7.5 and then to 5 I started to get these whole body-everything aches like the flu-mini flares that then back off and I am okay for a week or two.  If messing with the predisone dosage makes me feel like this- what is the Orencia doing?  At a copay that is over $300.00 a month- it's a lot of money for something that may not be helping. 

Through the discussion my rheumy was doing her usual probing of my extremities and problem areas and she feels that it could be the fibromylagia or something related to that which is causing the back/hip pain since RA generally gives the back a pass.   To that end she is adding neurontin to my mix and doubling the flexeril. 

She also feels that the mini-flare thing could be a "withdrawl" reaction to the lowering of the prednisone since I have been on it for so many months.  I didn't realize that was an issue.  Bottom line, she wants to try and taper me off the prednisone to see if the flares come back without it and that way we will know if the Orencia is working or if it is the prednisone is the key player.  I will stay on Orencia until April/May to allow us time to do this and if it IS the pred that is making the difference- we will go off the Orencia and take another route. 

So where does that leave us for the time being?  The current cocktail includes:

One monthly infusion of Orencia

50mg of Tramadol 3x a day
5mg of prednisone daily
10mg Flexeril 2x a day
Naproxyn 2x a day
300mg Neurontin at night
2 Tums for calcium
A multivitamin
1000mg Vitamin D daily

It's enough for a small pharmacy and when I sit down on Sunday to fill my pill box and my traveling packets I feel like I am 83 instead of 43.  The good thing about this ritual is that as I sit there counting all of these pills into their individual container I can't help but be incredibly grateful that I am still able to function and hold down a job that provides me with the opportunity to have health insurance.  Without that insurance- I would literally be in a world of hurt.  I am also very grateful that I have a rheumatologist who takes the time to listen to my concerns and explains things to me so that I can be active in my own treatments- I don't know what I will do when she goes out on maternity leave.  Finally I give thanks for the wonderful support system that not only keeps me honest but also doesn't let me get away with diminishing my health issues and don't hesitate to chastise me when I over do it.  That time spent giving thanks is so instrumental in keeping me upbeat and out of a state of depression that could spiral into something big. 

When I consider all of this, I can clearly see how blessed I am to have my job and those people in my life.  I am also blessed to have a place like this to put this down in writing and give myself the perspective that I cannot see when I am in the midst of it.  I will be heading to the pharmacy this afternoon to submit and refill my current rx's and tomorrow I get to have my 30-45 minutes of "thankful time".  I hope you all have a wonderful and pain-free weekend.


Anonymous said...

Sorry to hear about how you're feeling! (hugs!) Curious as to why you dropped the MTX? Probably better to stay on that than prednisone if there is any way you could do it. You might try adding Plaquenil to help taper off the prednisone. I had a lot of back/leg/hip problems, and changing the manufacturer of my MTX (pills now yellow instead of pink) and adding Plaquenil has helped the pain a lot, is allowing me to taper down on prednisone. These changes have helped even with stuff that rheumy thought was not RA related. I thought I was heading towards a dx of fibro too, but not now! I hate to see you on all those other pain meds if you might not need them.

Jules said...

Hi- Thanks for your comment. I went off my MTX (protesting all the way) because my liver levels spiked really high over a period of just a few months. I had a biopsy back in March and it showed difinitive signs of MTX hepatotoxicity.

I was devastated because MTX was a wonder drug for me. I was doing 1cc of injectable every week. I felt better on that than I had in years so I had to weigh the pros and cons but at the end of the day- we didn't want to risk hepatitis.

Unfortunately I have already been through Plaquenil, Sulfasalazine, Arava, MTX and the Plaquenil and Sulfasalazine didn't have any effect, I had an allergic reaction to Arava and had to give up my MTX.

Thank you for your encouragement- we need one another in this fight!