I was diagnosed with RRMS 2003 at age 50 (most likely had first attack at 37). I tried Avonex, but discontinued due to side effects. I had difficulty with insurance so hd no treatment for several years with stable brain MRI. Because of severe fatigue I started on Tysabri in 2009 and did extremely well on it (brain MRI stable).
Spring 2014 JC indeterm/neg then fall 2014 indeterm/pos. No index done on positive sample, lab couldn't find one (this is my life!). Since I was worried about PML, I stopped Tysabri in Sept 2014 after a total of 52 treatments (spaced them out towards the end). One neuro told me to stay on Tysabri, not to take Tecfidera because it affects CD8 cells and those are the cells that may prevent PML.
I was worried about PML so I started Copaxone after a 3 month delay due to insurance and pharmacy issues. Brain MRI stable with one C-spine lesion prior to starting Copaxone. 2015 JC neg/index 0.18. In July this year I started having much worse fatigue, paresthesias, and bladder issues and thought it was due to the relentless heat so I saw my neurologist. Brain MRI unchanged but Cspine shows previous lesion no longer present but two new lesions C4-5 and C7-T1 (two years between Cspine MRI's so don't know when they developed). So Copaxone isn't working. Currently have a JC pending. LFT's very slightly elevated (AST 44, ALT 64). Resting HR 48-50 so don't want cardiac side effects.
What would you consider my options for therapy at this point?
I have read all of the questions about JC index and Tysabri. One post stated that when restarting Tysabri the risk of PML is low for the first 24 months. Is that true regardless of JC being pos or neg? Is it true about Tecfidera and CD8 cells? What is the risk of PML on Tecfidera? Do you think there will be more cases of PML with Tecfidera as patients are on it for longer periods?
Thank you for your help and for providing this site. It has been a wonderful resource!
You have some good questions. Since I know very little about your MS other than your current age (approximately 63) and your disease duration (approximately 25 years), I will assume you have very little disability (you really only mention fatigue, sensory symptoms and “bladder issues”) and disease activity has been low (several new lesions in the spine with most repeat MRIs reported as stable even when not on treatment for long intervals). I suspect you have lots of options. Obviously, you need to discuss these options with your neurologist. These include:
1. Tecfidera; there is a very low if not inconsequential risk of PML as long as you monitor lymphocyte counts and stop the drug with any persistent 2-3 months) lowering below 600
2. Tysabri; your JCV index is low positive and you’ve been off long enough to reset the clock so to speak. Remember that being older and thinner are both additional risk factors for PML and if your disease activity is really low, this is not a great choice for greater than 18 months
3. Aubagio; it is well tolerated, effective and the liver enzyme elevations and hair thinning are definitely over emphasized. I suspect this is one of reasons it is used so widely in Europe and Canada.
I generally avoid Gilenya in people of our age. To many potentially silent cardiac issues and there is the risk of shingles.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego