Those of you who are young enough to remember high school algebra know that “X” stands for “unknown”. And that’s kind of where I am right now — in unknown territory (not high school algebra class … except in those dreams where I haven’t studied for the test).
But first I want to say a sincere, “thank you” to all the support and encouragement I received from my earlier “Discouraged” post. That really meant a lot.
As reported earlier, I didn’t feel that Cimzia was working and had moved up my appointment with my rheumatologist. That appointment was yesterday.
Honestly, yesterday I felt so bad it was hard to get out of bed to go to the appointment, but at the same time, it’s good to go to the doctor when you’re actually exhibiting symptoms. She examined my poor swollen joints and asked when my last Cimzia injection was — which was only four days previously. (Cimzia is scheduled every two weeks, so it should have been in full force.) So she agreed that it wasn’t working. That was the easy part.
Finding the alternative was the hard part. We discussed Rituxan (rituximab) which has been shown to be helpful to patients (like me) who either didn’t respond or quit responding to TNF inhibitors. (My list includes Humira, Simponi, Enbrel, and Cimzia not to mention Orencia which is T-cell inhibitor.) I have some hesitation about Rituxan (along with everything else I haven’t tried) and major reservations about any infusion therapy because of my lousy veins. I really appreciate the time that Andrew gave me to discuss his personal experience with the drug. I didn’t say “no” but my rheumatologist is perceptive enough to understand when I hesitate. So the discussion turned to Xeljanz.
Like any powerful drug there are benefits and downsides to it which I discussed in excruciating detail with my rheumatologist. Interestingly, she participated in the early clinical trials of the drug so she had pretty in-depth knowledge about the drug. Right now she has about a dozen other patients on Xeljanz. All of them had issues with TNF inhibitors and she indicating all of them are doing well on the new drug.
So that’s where we are. Xeljanz can raise cholesterol so you must have that checked before you can start on the drug. Fortunately I had labs done recently showing good numbers there. We’re in the midst of sorting out the insurance approval and getting the prescription set up.
In the meantime, I’m on prednisone to help calm things down (10 mg for two weeks followed by 5 mg for two more weeks) and I can already tell it’s helping, after only two doses. (I wish it didn’t have such horrible side effects, I’d just stay on it …) I’m also on Protonix while on the prednisone to help protect my stomach, although I was supposed to have been on it for quite some time since I also take Mobic/meloxicam. In addition, I am continuing to take 20 mg of Arava every day.
I can’t say I’m completely happy (and won’t until I see what miracles Xeljanz might deliver), but I’ve at least come out of my discouraged funk. (This may just be a side effect of the prednisone which can make me slightly manic.) I now have a plan of attack which is more than I had. Any plan is better than no plan.
Again, thank you to everyone for their support and encouragement. I’ll keep you posted as things go forward.
I hope whatever factor comes into your life today makes you X-tatic. Thanks for checking in.