Do You Overlook Symptoms?

My experience, with Xeljanz is purely anecdotal; this is my experience with the drug. Please take the information given for what it is, just one person’s experience, as we all react different to medication.

I started taking Xeljanz on April 24, 2013. I had high hopes and I felt relief within a week! My fatigue was no longer an issue, my RA pain and swelling were reducing every day.  My blood-work was even correlating with my symptoms! I was not 100 percent, but I was managing. I still had to plan out my activities and be careful to not over do things. I couldn't overdo, because the damage from RA could not be repaired by Xeljanz. I was on it for 7 wonderful months. I traveled, I went places, I got the house in order, I used every second of time that I could. Around August, 2013, I noticed an increase in pain, I attributed it to “over doing” it. I increased pain meds, and kept "maintaining" however, my blood work and inflammation markers tell a different story. Early in November 2013, I woke up in incredible pain and swelling in hips, knees, ankles. I increased my prednisone and I emailed my rheumatologist, all through the next week, we emailed, increasing the prednisone with every email to try and get a handle on the pain. My Rheumatologist also asked me to stop taking the Xeljanz at this point. I really did not want to stop taking the drug, but I complied with her wishes.  My pain became so severe that I went to an urgent care up here and asked them to give me an IM shot of 60 mgs of Solumedrol. The clinic complied. It helped for about 24 hours and then the pain and swelling were back. I was now on 40 mgs of prednisone and still very swollen and in a lot of pain. I saw my Rheumatologist on Nov 25, 2013, and she administered another IM injection of Solumedrol.  I was so disappointed that I had to go off of the Xeljanz, but my doctor insisted. (Little did I know what the high dose steroids were doing to my lungs at this time, that is another story to come--)

When I started to feel better (due to the high dose steroids) I called Pfizer (The manufacturer of Xeljanz) and reported my “adverse reaction”. At first the woman on the phone did not want to take my “story” as an adverse reaction… she kept “correcting” me, trying to put words in my mouth that were positive about my experience with the drug. I was firm and kept repeating myself until FINALLY she started to document what I was actually saying. I had my dates, my doses, everything documented. I asked her to read back my “testimony” and she finally had it correct. A few days later I received paperwork with my “adverse reaction” as well as an apology AND an offer to pay me back for the last month of Xeljanz. The cost for that monthly supply was over 600 dollars, so I took them up on the offer. I did not sign any documentation in order to get the refund.  

As I mentioned at the beginning of my post, this was my experience, and we are all different. However, with my experience, please take the following two things with you. 

First, we are so hopeful for a new drug protocol to work, that we sometimes overlook symptoms. Xeljanz was failing me as early as August, but I chose not to see it.

Second, as with ANY drug, if you have an adverse reaction, please report it to the manufacturer. They (the manufacturer) learn from us, the consumer. Especially on a new drug such as Xeljanz.  

Blessings…

Kim