There are two things to know: seronegative RA is hard to quantify and I haven’t been on a “formal” treatment plan since November 2019. The third thing to know is that I am a strong proponent of treating RA. Slowing the effects of the disease is possible but recovering from permanent joint damage really isn’t. I believe that treatment (1) should be in consultation with your doctor and (2) treatment can be whatever works, whether pharmaceutical, holistic or a combination of the two.
Looking for a viable (and affordable) treatment plan, in November 2019, we upped the dosage of an infused biologic which had previously been effective but eventually quit working. We were hopeful that the increased dosage would once again be effective. I had a significant allergic reaction – not enough to be life-threatening but enough that I had to seek medical intervention. I was scheduled for my second hip replacement about six weeks later – in January 2020, and since I would have had to stop treatment in advance of the surgery anyway, it was a moot point not to look for a replacement treatment at that point.
Recovery from surgery (and being off treatment) gave me the chance to assess my situation. I’d voluntarily (with my doctor’s approval) taken an occasional short break from treatment in the past, only to go running back. But all my labs since my diagnosis in 2008 have been stone, cold normal. Other than the couple of small breaks, I’ve been on a series of treatment plans, centered around biologics, since 2008. And while I felt better on treatment and symptoms like pain and fatigue were improved, I’ve still had five joint replacements and two spinal fusions, so my joints have still degenerated. So, after discussion with my rheumy, at my appointment after surgery recovery, we made the decision to just treat symptoms (pain meds when needed, the occasional Celebrex for inflammation) and, at least temporarily, to forego the search for a more aggressive treatment.
Fast forward to now.
I had my first in-person checkup with my rheumy since before the pandemic a couple of weeks ago. I’m doing okay. Not great but okay. My fatigue has actually improved since I’ve been off treatment (thank you, MTX), but my morning stiffness is a bear and painsomnia is my nightly companion. There are many days when my husband gets to help me out of bed. I have the occasional full-body flare. My inflammatory markers on my labs are still normal and the RF factor is still negative, but since I’m not on biologics/MTX other things like my liver tests are greatly improved. I think that being in lockdown with the lack of stress and focus on healthier, home-cooked meals has helped the situation. My rheumy ordered some imaging to see if the joints showed signs of inflammation, which came back basically negative, although my joints are still degenerating. (I will have to have both TMJ joints replaced at some point.) It should be noted that I also have Sjogren’s which could account for many of these symptoms. We continue to treat Sjogren’s and monitor the RA symptoms.
So am I in remission? Possibly. Being seronegative it’s hard to tell. But at this point, RA disease activity is low enough that I’m content to just deal with the symptoms until such point it’s apparent that a more aggressive approach to address the actual disease is, once again, necessary. I don’t know if that will last another week or another year. With RA, you really never know.
If there are any bits of experience/wisdom I’d offer from this latest part of my RA journey, there are these: (1) You know your body best, but you have to pay attention to what it’s telling you. Mine was telling me it might be okay to go off treatment for now. (2) Always discuss treatment plans (or lack thereof) with your doctor. While I know how I feel, my doctor sees things on exams, labs, and other tests that may not be apparent. There are instances where an RA patient has said they feel okay but the doctor sees early joint degeneration on imaging or other tests. The best approach is a combination of the patient’s experience and the doctor’s clinical expertise.
That’s my story (for now). I hope you are doing well. Thanks for checking in.