at the Water's Edge

Living life and learning all I can along the way!

The Saga Continues...

I had a bit of déjà vu this week.  If you’ve been following my story, you may recall the start of my "Sed Rate Saga" -- my hesitation to get my blood drawn back in November and the immediate call from my doctor’s office after my lab results came in because my inflammation was high.  That’s what prompted my switch from Enbrel to Humira to treat my rheumatoid autoimmune disease (aka, rheumatoid arthritis).  I was told to try Humira for one month, as an every other week injection, then to get my labs done again.  After a month of Humira, I felt no different.  Not necessarily any worse, but not better, either.  So, I kind of wanted to play a guessing game and try to predict what my sed rate would be (sed rate, or erythrocyte sedimentation rate [ESR] is a marker of inflammation).  My labs from November revealed a sed rate of 41. 

So, I went to get my blood drawn on Monday, figuring my sed rate couldn’t have changed too much from last time.  On Tuesday—again, less than 24 hours from when I had my blood drawn—I got a call from my rheumatologist’s office.  My sed rate was still high, and according to the nurse had held steady at 41.  I haven’t seen the paperwork to verify that it really is exactly the same as it was two months ago…but it really wouldn’t surprise me.  At any rate, this means that Humira is not working as well as we’d like – in fact, it’s not working any better than Enbrel was.  What’s interesting is how well my sed rate seems to correspond with my symptoms.  Being the nerd that I am, I decided to chart out the data that I have of my sed rate over time, with some annotations:

At any rate, because my inflammation is still high, I will be upping my dose of Humira so that I will now take weekly injections.  This week was supposed to be an “off” week; but, instead, I will be taking my next injection tomorrow.  I was told to give this weekly therapy three weeks, and if I’m not feeling better after that to call the doctor’s office.  I have an appointment scheduled for March, but if the Humira doesn’t kick in in the next few weeks, the doctor wants to see me sooner and discuss switching to a different class of biologic drugs (the only ones I have tried work by targeting a protein involved in immune function called TNF-α; there are other drugs that target different components of the immune system).

I have some mixed emotions about this.  When I started Humira, I was kind of under the impression that I should be doing it as a weekly injection since I’m taking as a monotherapy, rather than combining it with methotrexate.  So, that switch doesn’t really surprise or bother me.  What scares me is that I have only three weeks for my body to get in gear, or we’ll be looking at a whole new class of drugs—to which I have zero idea how my body will respond.  I don’t really want to go that route, but I know I need to do what it takes to keep my disease activity under control and to try to halt the progression.  I also am feeling very grateful toward my doctor right now.  I appreciate the fact that he actually tends to want to be more aggressive in treating my disease than I do (!) – and he is not willing to let me stay on a drug that is ineffective, when there are other things we can try.  All I can do for now is pray that Humira kicks in strong, and soon!

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Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Copernicus. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!