I am currently waiting for my referral appointment to a new MS sub specialist as my current one is now not covered by my insurance. They removed me from Rebif due to high liver enzymes that would not stabilize. Would it be reasonable to try another interferon? I don't tolerate Copaxone any longer either ... scared of PML risk in all new meds.
As you have learned, liver enzyme elevations are common on interferon therapy. While these liver enzyme elevations are usually mild and self limiting, more significant and prolonged elevations can occur and often prompt us to recommend discontinuation of interferon treatment. Some people are able to take other forms of interferon after their liver enzyme tests normalize, but this is not a common practice today since so many non interferon treatment options are available.
You state in your message that you are concerned about the risk of PML with all other non injectable therapies, but it is not clear to me why you have this concern with most of these therapies. The risk of PML is extremely low with all DMTs except Tysabri or long term immunosuppression with drugs we rarely use anymore. There have been no cases reported with Aubagio, rare cases with Gilenya and only a handful of cases on Tecfidera, usually in people who continued on treatment despite persistent lowering of their blood lymphocyte count. Similarly, we have seen no cases with Lemtrada or Ocrevus treatment and expect the risk to be low with these treatments.
What do we mean by high or low risk? The highest risk of PML occurs with those patients on Tysabri for more than 2 years with a JC virus antibody index over 1.5. Approximately 1 in 100 of these patients (1 %) will develop PML if they remain on Tysabri. The lowest risk patients, which includes virtually all other patients on approved DMTs, carry a risk of PML which is less than 1 in 10,000 (0.01%).
In medicine a risk less than 1 in 10,000 for a severe chronic condition is pretty low
I would keep an open mind when you discuss therapeutic alternatives with your new doctor. The best choice will really depend on the specific features of your case and your tolerance for risks and side effects
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego