AT THE WATER’S EDGE:

Today I had my follow-up appointment with my rheumatologist to evaluate how well Humira was working after three months.  I switched to Humira in December of 2011 from Enbrel, because my sed rate and inflammation were high, and my disease was not well enough controlled in my doctor’s opinion.  He was seeing joint space narrowing in my wrists, and we decided it was time for a change.  This was a hard decision for me, but I had promised myself that I would try to be transparent with my doctor and trust his judgment as well.  After a month on Humira and no change in symptoms or sed rate, we increased the dosage to weekly instead of bi-weekly injections.



As I went into the office today, I was a bit nervous because I again did not want to change medications.  I am feeling better than I was in December, but still not as well as I was this time last year.  I was unsure how my doctor would take my progress, and was a bit apprehensive, wanting to stay away from certain drugs as we begin to plan for having children.  Treatment decisions are hard.  But they are easier when you know your doctor’s on your side.


From the standpoint of doctor-patient communications, I think this was the best appointment I’ve ever had.  My rheumatologist did mark some improvement and noted that I had fewer swollen joints than when he saw me in December.  However, he did still note some inflammation and limited range of motion on my wrists.  He is very aggressive in disease treatment, which I appreciate, but also takes my own situation into consideration and wants to help me come up with a good solution while working around my family planning goals.  We ended up talking through several options, because he was not completely satisfied with my current condition since he knows there’s still elevated disease activity and the possibility of permanent damage.  Here’s a breakdown of the options we discussed:


1. Change biologics.  I asked my doctor which ones he would have me try next, and he said that he would probably have me try Rituxan next, or possibly Orencia.  He stated, as we all know, that it’s really just “a roll of the dice” – and you never know what will work best.  However, based on his experience, these seem to be the most effective with the least adverse reactions.  We also talked about how this would affect family planning, and I told him that I had done the research and knew that only the anti-TNF drugs and Kineret were rated Category B for pregnancy.  Since Rituxan and Orencia target B- and T- cells, respectively, they are rated Category C, and should probably be avoided even during conception.


2. Add prednisone.  My doctor would consider with putting me on a low dose of prednisone on a daily basis, but both of us seem to frown upon this option while we still have others.  It’s not affecting the disease, just helping the symptoms, and it’s not anything I’ve heard spoken well of on the long-term (not that it would necessarily be terribly long-term).


3. Add plaquenil.  My doctor told me that plaquenil was one of the safest DMARDs to be on during pregnancy.  I had tried it for a brief period of time a couple of years ago when my sed rate was elevated and I had some extra inflammation in my hands.  I didn’t notice a huge difference, but my symptoms weren’t that bad, either.  I was not sure that I really gave it a fair go, and I didn’t have any adverse reactions to it, so I was comfortable with trying it again.  Ultimately, this seemed to fit my current needs best, so this is what we decided on.  I will start plaquenil tomorrow.


We also had a brief discussion about sed rate, as he wrote out a new lab order so we could compare how the two months of weekly Humira compare to the bi-weekly Humira and pre-Humira period.  I decided to show him my chart where I tracked my sed rate and noted any symptoms or changes in treatment.  Unfortunately, I didn’t print it out, so I had to show him on my phone.  He was very interested in it and really appreciated the information, so I’ll have to print it out next time.  He noted my low periods when I was on the Enbrel and methotrexate combination, and said he’d like to see my sed rate back down near 10.  


I got my blood work done this afternoon, so we’ll see what it reveals.  I asked him to have someone from the office call me when the results come in, and he said he would (I need to add it to my chart, after all!).  I have a ways to go to get back to 10.  But I’m fighting hard, and my doctor is fighting for me, too.  I really think he makes it his goal to see his patients in remission and feels like his job isn’t done until that goal is reached.  As I left the office, I thanked him for all he’s done to help me, and he just replied, “I’ll keep trying.”  I feel good about my progress and feel good knowing that I have a doctor who has my best interest in mind and is determined to help me reach my personal and medical goals.