First of all, let me say that I believe strongly in treatment for RA. I’ve seen too many people who didn’t seek treatment, or didn’t seek treatment soon enough, and have had permanent, debilitating damage. I am a western-medicine/pharma person, but I believe that whatever works for you is the path you should follow.
But I am also a bottom-line, results driven person. If something isn’t working, at some point you need to realize that you’ve invested enough into the situation.
I’m coming to the conclusion that I’m at that point with this whole chronic illness treatment situation. I posted earlier about my latest “failed” treatment and then the subsequent horrendous allergic reaction I had when we tried Remicade at the higher PsA dosage. I see my rheumatologist in mid-January and until then, I decided to take a medication break and just clear my system and my head. And frankly, for the moment I’m going to stop letting all this fretting over my condition dominate my life. I’m tired of being a patient and I really just want to go back to being a person.
But getting back to being a bottom-line, results driven person.
I was diagnosed 11 years ago. I’ve been on 11 different treatment plans. I’ve had 11 surgeries, including four joint replacements and two spinal fusions. I’m looking at a fifth joint replacement (the other hip) probably in 2020. In addition, I’ve had four epidural steroid injections for back pain and three endoscopies (related to inflammation in the esophagus). During this time, all of my lab results have come back 100% normal (except one really bad liver test caused by my DMARD). There hasn’t been any hard data — only opinion — that I have RA or PsA or other inflammatory disease.
I know that you can’t quantify the good that a preventive program does (e.g., how many cavities do you avoid by brushing your teeth twice a day?). But given the results I’ve had, I have to wonder if all the side effects, and time, and costs, and stress of 11 years of treatment have actually paid off. Would my life have actually been better (more enjoyable) if I’d just gone on about my business and lived my life? I’d no doubt still have had all the joint replacements and other surgeries, but I could have avoided all that other crap that comes with treatment, and doctors appointments, and pharmacy bills, and insurance claims, and labs, and all that potentially wasted time and money.
Layered on top of this is that I’ve about run out of treatment options. I’ve basically been on all the infused treatments that Medicare will pay for and I can’t afford the copays for the newer injectibles and oral meds. The cheapest alternative I could find would cost me $500/month plus another $100 additional insurance premium for the Part D drug policy that would cover it. (Medicare coverage makes you ineligible for patient assistance programs.) And I would do it if there was a guarantee that it would work better than the other 11 treatments I’ve already tried, but there’s not.
If I were in my 20’s or 30’s, there would be no question that I would be working to slow the disease progression by any means I could find. But I’m not. And while I’m not exactly ancient, there comes a point in everyone’s life when you realize that you have more years behind you than in front. These remaining years become increasingly precious and you start asking yourself how you want to live them and what’s really important to you. And the fact of the matter is (and this is a hard fact to face), even on a treatment that works, I’m not going to be cured — I’d just be on treatments forever.
(Does this sound like a mid-life crisis, a pity party, or what?)
The one thing I will never regret, though, is the wonderful friends that I would have never met had it not been for RA (or whatever this is). I’ve come to know and love some amazing, strong, funny, wonderful people that not only carry the burden of their disease, but help others carry theirs as well. Thank you so much for being in my life and inspiring both me and so many others.
So here’s the current thinking/plan.
I’m staying off RA drugs until I see my rheumy in mid-January. Depending on how I feel, I very well may take a (much-) longer treatment vacation (and maybe a new infused drug will be introduced). The good news is that I’ve been through this long enough that I know when a plan isn’t working and am smart enough to go back to treatment if I need to. In the meantime, I’m going to focus on being a person, not a patient.
Thank you so much, once again, for checking in. May your holidays (however you celebrate or don’t), be blessed and may 2020 bring us all good health and happiness.