Here is My Question:
Will 3T MRI pick up lesions not seen at 1.5T? From April 2005-May 2019 I never had a new lesion on 1.5T MRI. And no enhancing lesions have EVER been seen.
But in June 2021 3T MRI was read as 3 new T2/FLAIR hyperintensities characteristic of demyelination disease, 2 left frontal and 1 left parietal though my neurologist says he only sees one new lesion. Clinically, I am stable with no flairs in 15 years. Since diagnosis in 2005 I have been on Avonex, Tysabri(12/06), Tecfidera (9/12), Tysabri(1/19). My JC title was ~3 so I was on a 6 week dosing interval when I restarted Tysabri because I couldn’t take the Tecfidera stomach distress anymore. I had a couple of prescribed Tysabri “holidays” and I was off Tecfidera for ~12 months before restarting Tysabri. And my MRI never seemed to change.
In January 2019 about 3 weeks after re-starting Tysabri I had my first ever asthma hospitalization. In June my pulmonologist added Nucala to my asthma regimen of Advair, Singulair, Allegra and Flonase. In January 2020 I was hospitalized again after getting a cold from my grandson at his Christening. My Advair was increased to maximum dose at discharge.
After my February 2020 Tysabri infusion I decided to stop Tysabri because 1)the pandemic (and I have since known of people who got infected at infusion or dialysis center and some died, Massachusetts was pretty awful early on) and2)possible interference with Nucala which blocks IL5 whereas Tysabri increases IL5.
When I informed my neurologist of my decision and my rationale he responded that MS patients without severe disability were not at increased risk from Covid.
But I am not just an MS patient. I am 64 yo with BMI of 33, severe asthma, type 2 diabetes (HgA1c 5.7 on Trulicity), and hypertension with fair control on 4 meds.
I have always wanted aggressive treatment for my MS but it is not my biggest problem anymore. I also need new knees ( osteoarthritis) and have degenerative lumbar and cervical disc disease and spinal stenosis at C3 S/P ACDF at C5-6,6-7.
My neurologist and pulmonologist finally talked to each other after my pulmonologist took the initiative and they agree that I can be on both Tysabri and Nucala. Really?
My need for any DMT has not been addressed, nor my question about 1.5 vs 3T MRI. And I assume my JC titer is still high though previously I felt more comfortable about that (with increased dose interval) than my neurologist seemed to. He was always pushing Ocrevus which I am leery of with my asthma. I guess Kisimpta probably has the same risk issues without the nuisance of infusions.
My veins are lousy. My insurance company makes me go to a center that is not that slick with bad veins. But I was fully Pfizer vaccinated as of 4/17 so that’s not an issue now.
If I need to be on ANY therapy, what about Kesimpta? I already give myself Trulicity weekly and Nucala every 4 weeks. Another injection is irrelevant to me.
Most of all, why can’t my neurologist see more than my MS?
OY! I finally got comfortable with stopping DMT Rx and at my neuro visit we agreed I could stay off treatment in setting of stable clinical status and MRI. And then I had this 3T MRI.
We’ll, that is a lot to take in!
I’d be careful reading too much into the 3T v 1.5T MRI comparison. The higher field strength MRI will likely picks up mid pathology (whether it be from prior MS, hypertension, diabetes, we levered cholesterol, etc). Not all lesions are MS lesions and you identified at least a could other health conditions under treatment that can also lead to white matter lesion formation. Your question of whether you need DMT or not at your age is a valid one. Natural history cohort studies demonstrate that the average age where the inflammatory phase stops ranges from 53-55 years.
One option could be holding DMT and reimagine on 3T in 6 months (monitoring for subclinical disease activity). You must exercise caution when stopping Tysabri due to the possibility of rebound disease activity.
I’d suggest asking your neurologist about the need for DMT at this stage of your MS and if there is a comfort level for a drug holiday given your relative stability and age. When making a big decision like this, I suggest that my patients get another opinion from my colleague in MS. It never hurts to have a fresh set of eyes review your disease course.
A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
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