I was diagnosed with MS at age 64. Symptoms began with altered sensation in the legs at first then progressively moving upwards. I was hospitalised a few months later when I had eye involvement and loss of balance etc and tests confirmed it was MS. Treatment with steroids improved the symptoms but they returned with a vengeance as soon as they were stopped. There was no remission at all so I was started on Tysabri soon after.
The result was dramatic, vision completely back to normal after three infusions and all other symptoms greatly improved. I have been on tysabri for over 5 years now and gradually my balance and walking has deteriorated and my last MRI showed more lesions. I'm waiting on the result of a blood test to see if I've become resistant to tysabri. I am still JC negative.
My question is what would be the better treatment if I stop Tysabri? The options I have been suggested to consider are Gilenya or Lemtrada.
You ask a very difficult question. It appears you have late onset MS (age 64) with some initial inflammatory activity responding to Tysabri. Eventually the benefit from Tysabri treatment waned and your condition continued to worsen. It is unlikely that your continued worsening is due to the presence of Anti-Tysabri antibodies. Remember, Tysabri was not shown to be effective in the recent secondary progressive MS clinical trial.
Options for you at this point depend on many factors including
1. Co Morbid health conditions
2. The presence of absence of inflammatory activity in the past 2 years
3. Insurance restrictions
Certainly, Alemtuzumab (Lemtrada) and Ocrelizumab (not yet approved yet but likely to be approved any day now) are potential options.
Unfortunately, there are few studies to guide you in your decision making since most studies exclude individuals in your age group and there is little evidence that any of the currently available disease modifying therapies benefit people with well established secondary progressive MS in any age group.
If you have not already established care with a trained MS specialist, this may be a good time to see one for an opinion on further treatment.
Good luck to you
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego