I had a aneurysm about a year ago. I was in the hospital for 2 months and was never given anything for my MS. I had been on Copaxone. Then when I was up to it, was put on Aubagio, which just gave me very high blood pressure, which I am still be treated for. I have been off of Aubagio for about 3 months. They now want me to go on a new drug.
First, I'm concerned because obviously that Aubagio is not out of my system yet. Would it be safe going on something else when that is still in my system causing high blood pressure (taking med for that). Other question: how the heck am I suppose to know what to choose? They gave me booklets on Tecfidera, Tysabri, Lemtrada. I saw the neurologist's assistant. Cannot get an appt to see my neurologist. I am looking for a new one.
I was on Rebif (affected liver), Gilenya (white cells), and Copaxone. How do I decide which one they gave me is right for me? I'm scared of all the side effects but would really appreciate a "professional" point of view. We are going on vacation in just about 3 weeks so I'm afraid to start something new before I go on that. Anyway, can you give me a suggestion on how I should decide what to take. She just handed me the info and said let us know which one you want to try. Can't handle this alone. Would so appreciate your advice. Thank you!
You ask very good questions. As I don’t know anything about your individual case, let’s just think through your problem together, so you know what questions in order to make an informed decision.
First of all, Aubagio rarely raises blood pressure more than 5 points. I suspect your blood pressure was high before starting the Aubagio, if your blood pressure became, “very high” after taking this medication. If you and your doctors really think this is the cause of your high blood pressure, the aubagio can be completely eliminated from your system in less than 2 weeks by taking cholestyramine for 10 days.
The more difficult question is, how do you decide which one disease modifying therapy is right for you going forward? To make this question easier, let’s assume copaxone, interferons, gilenya and aubagio are no longer options based on your past experience. This leaves you the three choices mentioned in your question and a new drug called Zinbryta (Daclizumab). Here are the pros and cons
If your MS has been active, defined as new MRI activity (new T2 or gad lesions) in the past year with one or more relapses, all drugs could be considered. The greater the activity (number of new lesions on MRI, number of relapses) the more I would consider the most highly active agents such as Lemtrada or Tysabri
If your MS has been active (defined as above) and your walking is limited (especially if you’ve had symptoms of MS for more more than 10 years) and getting worse because of balance or leg weakness problems, I would consider lemtrada
If you’ve had minimal activity of your MS in the past year I would consider Tecfidera
If you have long-standing MS (greater than 15 years), no definite relapses in several years, and a slowly worsening course with repeat MRI scans over the past 3 years showing no significant activity none of the available therapies are likely to be of benefit to you
As for side effects and convenience
1. Tysabri is probably not a good idea if your JC virus antibody index is greater than 1.0 since this would elevate your risk of developing Progressive multifocal leukoencephalopathy (PML) ; This is a monthly infusion with very few side effects
2. Lemtrada is associated with a > 30 % risk of developing Autoimmune disease particularly autoimmune thyroid disease. Because of this you must be monitoring (regular exams and monthly blood and urine tests) for 5 years after your last dose. This is given as a 5 days infusions followed one year laterby a 3 days infusions. Many people experience manageable infusion reactions
3. Daclizumab is a monthly subcutaneous injection that you can give yourself. This can cause autoimmune liver disease, rashes and enlarged lymph nodes. This also requires regular monitoring
4. Tecfidera is a pill taken twice a day with food. It can cause flushing, nausea, abdominal pain, cramping and diarrhea that usually disappears after the first few weeks. In the long term it can lower your lymphocyte count which must be monitored on treatment. This is the most prescribed MS medication in the world and the best choice for you if you have average to below average disease activity and severity.
There is also a very good treatment for MS that we anticipate getting approved by the FDA by the end of the year. This is called Ocrelizumab and is given by intravenous infusions every 6 months with few side effects
So hang in there and think about your choices while you vacation. The most important question to ask your MS specialist is ; “Where am I in the course of this disease?; How active is my MS by clinical and MRI criteria?; and what is the chance of developing significant disability within 2 to 3 years without aggressive treatment? If he or she can not answer these questions, you need another opinion
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego