Stable Disease Does Not Mean Symptom Free
Recently I was talking to a nurse; not my nurse, but someone who came to the house to help my mother with some new medication. During our conversation, I mentioned that I have MS and RA. She asked if I use any medication to treat my diseases. I answered in the affirmative and told her that I use rituximab (Rituxan) and methotrexate; treatments prescribed for RA which also help my MS.
Side note: There are a number of people with MS who successfully use rituximab off-label because of its efficacy. Ocrelizumab (Ocrevus) is a humanized version of rituximab for which the MS community is eagerly waiting FDA approval in December. Both rituximab and ocrelizumab are infusion therapies that must be given in an infusion center or doctor's office.
Stable with MS for years
The home nurse asked if I thought that treatment was working well. My response was another enthusiastic yes. I’ve been stable for years now, with the exception of the mild relapse that rudely broke my 50-month relapse-free streak earlier this year.
“So you don’t have any symptoms?” the nurse asked interestedly.
I still have symptoms!
Oh no, I absolutely still have symptoms! But I haven’t had any new lesions since switching treatments in 2009. My latest MRI reports from last week basically sound like a broken record:
Spine: Stable demyelinating disease. No new/enhancing cervical cord lesions are identified.
Brain: There has been no significant change. No intracranial abnormality is detected.
When I mentioned the mild relapse to the nurse, she expressed a lot of sympathy. No sympathy is needed though. If you calculate my personal annualized relapse rate from 2011 to 2016, it’s low at 0.3-0.4 relapses/year. That’s a significant change in disease activity from the number of big relapses I had previously from which I never returned to baseline and questioning whether I might be transitioning to secondary progressive MS at the time we were trying monthly pulse steroids in 2010.
MRIs don't always correlate to relapses or symptoms
But MRIs do not always correlate to relapses or symptoms. Some of my MS symptoms which are always present to some extent include sensory changes, spasticity, hyperacusis, inability to regulate body temperature, heat sensitivity, fatigue (mental and physical), muscle weakness, impaired balance, occasional urinary urgency, depression, and anxiety.
No symptoms would seem like a cure
If I didn’t have any MS symptoms at all, it would almost seem like “a cure.” That would be cool but not something I expect with any treatment.
I am very thankful, however, to have stayed about the same with my MS for years. In fact, my condition has actually gotten a bit better over time, although I still have symptoms. I continue to experience disability and depending upon what’s going on score at least 2.5 on the EDSS disability scale, but I'm still able to get out and do things like learn how to bike.
MS never really goes away
It's important to remember that stable does not mean no more MS. Just because your MS is stable, or you demonstrate “no evidence of disease activity,” it doesn’t mean that your MS has gone away. That’s something that people need to know.
MS never really goes away, but it can give you a break every once in awhile and stay the same. Stable in my book is a great word. I'm happy to be stable and thankful to be doing well.
Have you taken our 2023 In America Survey yet?