Q1: Siponimod or not?
I’m 62 and was diagnosed with MS at about 40. I stopped Gilenya in 2016 due to a very high gamma-glutamyl transferase or GGT (no alcohol intake) with gut problems. My GGT was back to normal within four months. I have been offered siponimod (Mayzent) but decided against it because it is very similar to fingolimod. So, I am currently not on any treatments. I have been told I am NEIDA, although one neurologist said that some lesions had increased in size.
I’m now diagnosed with SPMS. I manage my health with physiotherapy and lifestyle adaptions. I have bowel and bladder problems and physical disabilities, i.e., unsteady gait, weakness in my legs, vertigo and cluster head pains for which I have nerve blocks. My question is, would you suggest siponimod or not at this stage?
Q2 - To start a DMT or wait?
I had a lesion on my spine four years ago, and a brain scan revealed a lesion there, too. Repeat MRI has found no new lesions after four years. My neurologist suggested that I not go on to a DMT at this stage as they believe my MS to be mild, and he did not feel the risks of going on a DMT were warranted. He advised that DMTs help to prevent new lesions but don't prevent smouldering MS.
Am I missing an opportunity to manage MS proactively at an early stage?
Q3: T-cell and B-cell repopulation post-HSCT?
My T cells have repopulated in just four months after HSCT. They took over 1.5 years on alemtuzumab (Lemtrada), and I subsequently failed alemtuzumab.
Am I correct that I will likely relapse once my B-cells have repopulated?
NOTE: General substack newsletters and microsite are free; it is only Q&A sessions that are restricted to paying subscribers. I can't run and maintain the MS-Selfie microsite, hence the need to pay people to help do the work for me. If people want to ask medical questions unrelated to the Newsletters or Podcasts, they either need to become paying subscribers or email (firstname.lastname@example.org) to request a complimentary subscription.