If you’ve been following this blog recently you know that I’ve been doing a happy dance since I’ve been on Xeljanz. Two pills a day and it was like I didn’t have RA ever at all.
I had also been taking 20 mg of leflunomide daily and 7.5 mg of Mobic twice a day. After about six weeks on the drugs I was doing so well that we dropped the leflunomide to 10 mg and eliminated the Mobic. That lasted about a month. I started feeling worse as the month wore on — more pain, more swelling, more tender joints. Then I had a major flare. I did a prednisone taper and went back to the higher dosage of leflunomide and added back in the Mobic. I felt better while on the prednisone and for a few days afterward, then the pain, swelling, tenderness, and fatigue started creeping back in. I moved my regular check up with my rheumatologist earlier and met with her today.
The result is that I’m the first patient she’s had that has failed on Xeljanz. Obviously painful and swollen joints, especially in my wrists and hands, but other joints as well.
The plan is to switch to Remicade starting as soon as all the insurance red tape is sorted out. There will be an infusion every two weeks for three doses, then once every six weeks. My doctor explained that one of the positive things about Remicade is that while other biologics are regulated about the dosage, she is able to adjust the dosage of Remicade upward if the patient needs it. While she would start most patients on (for example) 4 mg per kg of body weight, she will probably start me on 6 mg as I have “failed” on previous TNF blockers (Enbrel, Humira, Simponi, Cimzia). Instead of the normal 8 weeks between infusions, she is recommending every six weeks.
Besides the obvious fact that I have “failed” yet another drug, there are other bad news aspects of this:
- I am quickly running out of other options. There really aren’t a lot of other drugs to try if I don’t respond to Remicade. And I’ve failed at all other TNF blockers in the past so it makes me wonder if I will fail this one as well.
- It only took a matter of a few weeks for me to quit responding to Xeljanz. I was on Humira for 18 months (my first biologic) before it quit working for me. I seem to be accelerating through drugs. Part of this may be due to a built-up tolerance to TNF blockers in general, but it is worrisome.
- I have lousy veins. They can never hit a vein the first time to take blood and the last time I had an IV, they stuck me five times.
- While I’m waiting on approval for the Remicade, I am on 10 mg of prednisone and pain killers. I think prednisone is a great weapon but it should be used wisely and sparingly. I really don’t want to be on it for long. And pain killers dull my thinking and make me lethargic. But right now, the pain is not something that I can ignore.
So I’ve gone from my happy dance to my pouty face. I hope that whatever news you have in your life today is positive. Thanks for checking in.