I am 27 and I have been on Gilenya for almost two years now and I had no relapses since then. Every thing seems relatively fine (except for some minor effects; hair loss, headaches) but my doctor suggested that I should switch to interferon as Gilenya might develop another disease (PML) as a side effect. I do not feel comfortable switching to any medicine other than Gilenya but I want to make sure that I'm making the right decision. Would you please help me decide by clarifying to me which medicine proved to be better (side effects and all) in treating MS. Thank you.
Thank you for your question. The answer is relatively straightforward.
The risk of PML on Gilenya is extremely low or non existent. Almost all cases of PML reported in people on Gilenya occurred in JCV antibody positive people who were taking Tysabri and switched to Gilenya in an attempt to lower their risk of PML. Since most of these cases rapidly developed PML after starting Gilenya and we know that PML is asymptomatic for 6-9 months, it is generally agreed that most of these Gilenya treated patients already had pre-symptomatic PML from their time on Tysabri. Even assuming that Gilenya is rarely associated with the development of PML, this risk is exceedingly small and not a reason for stopping an effective therapy.
It is hard to recommend that anyone switch from Gilenya to an interferon unless they are experiencing intolerable side effects or perhaps planning to get pregnant. In either case (i.e. planning pregnancy or side effects) it would make more sense to switch to Copaxone or Glatopa than to an interferon. I suspect your doctor did not recommend Tecfidera or Aubagio because he or she believes either treatment may be associated with PML. While this is true, the risk of PML with any of the oral therapies is very low (< 1 in 5,000 to < 1 in 10,000). This compares to a risk of 1 in 100 on tysabri if you are JCV antibody positive (high titer) and receive treatment for over 2 years.
The Transforms study showed that Gilenya decreased relapses and MRI activity much more than interferon. This was confirmed in a large, multi- country study using the MSBase registry. Therefore, you wouldn’t switch to interferon for disease activity either.
I hope this helps.
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
200 West Arbor Dr
Medical Offices North MC 8687
San Diego, CA 92103
619-543-3500 (Clinic phone)
619-543-5295 (Office phone)
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