Friday, February 28, 2014

Back on Cellcept. Hooray!

In Wednesday's post, I told you how emotionally prepared I was to accept my doctor's recommendation to start Methotrexate. I was ready and willing to go big-gun when I arrived for my appointment...but before we moved forward, my doctor wanted to hear details of what had transpired in the two months since I'd seen him. (Note that my appointment wasn't scheduled for a month later, but because I was in such pain every morning, and my attempt at a second prednisone taper was clearly failing, I called and moved up my appointment.)

I told him about the joint pain every morning, that didn't subside until 1 or 2pm, or sometimes as late as 6pm. I told him about the swollen lymph nodes, the tingling sensation in my hands, my light headedness, and my fatigue. I told him about the swollen joints, the hot-to-the-touch joints, and the sensitive elbow and foot nodules. He then told me about my lab results, which showed a drastic increase in disease activity. In conclusion, he and I deduced that I was in an all-out flare - and it was time to make a move.

So although we started the appointment with the intention of adding Methotrexate to my medication regimen, after he reviewed my symptoms, asking for my input along the way, we decided that CellCept would be the best option at this time. And I jumped for joy, primarily because I've taken Cellcept before and I know how well it worked the last time. But I was also relieved because I know what to expect with the drug - I know how it's administer, have a firm grasp on the side-effects, and have a good idea of how I typically respond to the drug. Knowing what to expect makes all the difference!

As soon as we settled on CellCept, I felt as if my doc was throwing me a lifeline. Immediately, a burden was lifted. The burden of waking up morning after morning, completely overcome with pain. The difficulty sleeping, the challenge of pushing off the sheets first thing in the morning, having to choose certain pajamas that were easy to remove. The silver lining was that throughout the day, the pain did subside. But waiting the four, six, or eight hours until that relief occurred was taking its toll. But with Cellcept on my side, I felt like the world was opening up again. Not only did I see visions of pain-free breakfasts and unrestricted morning activities, I saw the possibility of the return of a happy, flare-free lifestyle. One where we can travel when we want to, make plans when we need to, and simply return to the "living well" lifestyle I'd become accustomed to, one which is relatively void of symptoms. (I still have the afternoon fatigue to contend with - but I can manage that.)

You never realize how your outlook on life changes when you're sick. After hearing that Cellcept would be added to my list of medications, I realized that I'd put a ton of plans in the "up in the air" category for the coming year: the speaking engagements I have scheduled for the spring, and the trip my husband and I have planned for this fall. Even the Girls' Spa weekend I have coming up next weekend. In the back of my mind, I wondered how, make that if, I was going to be able to make them happen. Now, with Cellcept in my pillfold, I feel confident that I'll feel good enough to fully participate in each one of them.

But don't worry - I'm not going to go crazy. I will continue on the path to wellness by getting my sleep, monitoring my activity level, and not overdoing. And there's always the possibility that my disease has changed such that Cellcept won't be the cure all it was before. But I don't believe there's any harm in hoping for the best!

While Cellcept is a welcomed addition, it's not without slight trepidation that I start the drug. It does have its own set of side-effects. But this article I posted last year about there being no clear link between lupus and lymphoma eases my concerns.

Next week, I'll continue with details of my appointment and changes in my medication.  Now more than ever do I need a Pillbag to keep it all straight!

4 comments:

Debs said...

I'm sorry you were in pain so long everyday. I hope CellCept starts working quickly. And there is the key to feeling better as you walk out of the Dr's office, HOPE. What a good feeling!

Ian Ranshaw said...

Will be curious to see if it works as well as it did before. Sounds like you have one of the best Drs. out there. Doctors that listen are PRICELESS. Hope your feeling better soon.

Sara Gorman said...

I hope it works, too! My doc IS a good one. He takes a little finessing, but we work well together. I'll keep u posted on the cellcept!

Sara Gorman said...

Thanks, debs! And Hope doesn't disappoint, does it?!?!