Tags
Carla Kienast, Humira, Simponi, Health, Enbrel, Orencia, knee surgery, mobic, morning stiffness
I go back occasionally and see the posts where I swear that, no matter what, I’ll be a good patient and take my RA drugs because I have learned, learned, learned my lesson about being off of them.
Yet this morning I met with my rheumy and discussed (and got approval) for a four-month trial of only Mobic – discarding my Orencia and Arava for a while. Yes, I know that Mobic only treats the symptoms, not the disease. And yes, I know that probably the Orencia and certainly the Arava are still in my system, a month after discontinuing them — so the sense of well-being I’m feeling is not just the Mobic.
However, I am feeling well. I have energy. The lethargy and lack of interest (caused no doubt by said RA drugs) have evaporated just as the drugs are evaporating from my system. I don’t have morning stiffness, I don’t have swollen joints (except for knee that is recovering from surgery), and I haven’t flared. In fact, I haven’t felt this good since I went on Humira, then Simponi, then Enbrel, then Orencia.
So what’s wrong with this picture? I hope nothing. If it all backfires on me, I have my drugs stashed safely at home that I can start the medication routine again. But I know how I feel and since I’m sero-negative and all my tests come back cold-stone normal, how I feel is the only real indicator of disease activity I’ve got. And since there are no indicators that show whether drugs are really working, then why am I taking them when I feel better when I don’t?
I know, I know, I know. All this is just so much justification patter. It’s kind of like when you wake up face down in your neighbor’s kiddie pool wearing nothing but a lampshade, when it seemed to make so much sense the night before. (Not that I’ve ever done anything like that …)
But I’ve chosen this path, and I’m happy about it. The fact that I have the support of my rheumy and there are breadcrumbs on the path to lead me back if I get lost are all good things.
And like any path, you can only take it one step at a time.
I hope that wherever your path leads you today brings a smile to your face. Thanks for checking in.
Carla, I completely understand your decision. Since Mobic is handling your pain and there are no other disease symptoms or even test indications, going off the other meds seems justified to me, too.
I hope you’re right–that you don’t need the other RA meds at this point. I hope the Mobic continues to do a great job for you. My fingers are crossed.
I truly do understand this blog post. I gave up most “traditional” ra meds years and years ago. First and foremost I feared they (meaning the tnf meds like Humira, Enbrel, etc.) would slow down my body’s ability to fight off my two thyroid cancers. Now, I just don’t want to take the heavy duty meds and no doctor can convince me otherwise right now. I am happy to report though that the ra medical community has finally come around to seeing it my way…hooray for my fortitude and insisting on not taking the tnfs. The new guidelines released recently in 2012 substantiate my gut beliefs at that time…wait 5 years after being diagnosed with cancer before resuming the tnfs. I truly do understand your feelings and we have to give ourselves the opportunity to do what we believe is right for us personally. Treatment to me is a 360 degree work of art, not just a single solitary path that we all must travel exactly the same way. Good luck with your decision and as you said, you can always resume the medications.
Carla: I say to each his own….I personally have tried this a couple of times with my rheumatologist’s approval when my apparent remission was such that it made sense to give it a shot…it did not work for me…now 15+ years into RA I have almost zero errosions and so that confirms for me that wisdom of staying on the Biologics…my doctor has told me over and over that symptom control is not the only component to look at and I have to agree and now my most recent foot xrays have confirmed that I made the right choice. That said, I had to try it!!! We need to learn these lessons on our own to some extent and so I wish you well and hope it truly works for you!
Nan
Flippers crossed for you, Carla – I really hope this works for you … and I hope the knee is doing well too!