So my lovely cousin (who was actually my long-lost cousin for decades until Ancestry.com reunited us last year) rightly pointed out that it’s been awhile since I’ve posted. I guess I’ve just not been sure what to say and COVID fatigue has generally zapped any enthusiasm/energy to say it. A great part of not knowing what to say is because my uncertainty of where I am in my RA journey.
As a bit of background, I was diagnosed 12 years ago with seronegative RA – meaning I don’t have the definitive RA ‘marker’ in my labs and my other lab results have always been normal. So I’ve always wondered if I truly have RA. I’ve basically been on continuous treatment since that diagnosis although that hasn’t prevented joint damage. I’ve had five joint replacements and two spinal fusions plus significant arthritic changes in my non-replaced joints — hands, elbows, ankles, feet. I’ve been on about a dozen treatment plans and, while I generally felt better starting a new medication, it tended to wear off quickly.
I had my last biologic infusion in November 2019 — to which I had an allergic reaction. It’s a biologic I’d been on in the past, but we’d upped the dosage to the higher Psoriatic Arthritis level which no doubt caused the reaction. I was having my hip replacement in January 2020 and since I’d have to stop treatment in advance of the surgery, there didn’t seem much use in starting something new.
During my July televisit with my rheumatologist, I told her that I really didn’t feel that much worse being off treatment. My morning stiffness is somewhat worse. But interestingly, I have a lot less fatigue (which I always suspected was a side-effect of the treatment anyway).
One thing I have noticed is how much time I’m NOT spending on healthcare visits. I was seeing my rheumy every 90 days. I was having labs every 90 days. I was having an infusion every six weeks. I was dealing with pharmacies and appointments and insurance on a continuous basis. While I have other health issues, RA was clearly dominating my life. Add on top of this, the amazing amount of time I was spending blogging, writing for medical sites, serving on patient advocacy boards, etc. I had clearly become a “patient expert.”
But actually that was the plan. When I could no longer work full time because of health, I had decided my next step was to devote more time to patient advocacy, so at least that part was a matter of choice.
The question is, where am I now? Am I in remission? No, I don’t think so. There are definite signs of inflammatory arthritis. It might have taken a step back, but it’s still part of my life.
Was I perhaps misdiagnosed in the first place – an omission of fact-finding? My official diagnosis is still seronegative RA. When I asked my rheumy about it a few years ago, she indicated that being seronegative, it’s impossible to be 100% sure. But yes, I have systemic arthritis — not just osteoarthritis which is wear and tear on joints (although I have that as well). At the same time, the pathology report on my recently replaced hip joint didn’t show any evidence of RA.
So is there confusion? You bet. But I can’t say that I’m unhappy or concerned about it. Yes, I’m probably having joint damage as we speak. But the evidence (five replaced joints) tells me that being on treatment with all the time, money, and side effects, didn’t really prevent the previous joint damage so I’m not sure it would prevent it now. And after 12 years, I’m enjoying the break from being a full-time patient.
My rheumatologist and I have discussed my going off treatment as long as I’m comfortable with it. At the point I decide it’s time, she and I will have another discussion about restarting treatment. And I know that time will come.
But let me be clear. I am not encouraging you to go off treatment. I am doing what I always do — have an honest discussion with your rheumatologist about your symptoms and preferences. RA is a serious, often debilitating illness. Any changes in your treatment plan — including taking a break (especially taking a break) — should be done so with your doctor’s approval.
So other than that, I’m basically self-isolating as much as possible to avoid COVID exposure (our numbers here in Dallas are definitely on the rise), and keeping well. I truly hope that you and yours are also well and finding ways of coping with the current unsettled environment. Thank you so much for checking in.