Don't I have a say about what medication I take for my multiple sclerosis?

Here is My Question:
My question is, I was on Tysabri 2 yrs doing great with no discussion. My doctor stopped my infusion. Said my titer test was high. For 30 days I didn't take anything (they gave me a shot that day before I left) After 30 days I went back to see him and was put on Aubagio. I haven't felt good since. They didn't do the MRIs or blood work that was required. When I questioned why they put me on this they said "oh you will be better off." I bruise badly now and my balance is a lot worse and my memory has gotten worse but when I say anything they say it will be ok. Me, my kids and my friends have all noticed a big change in my overall health in the last two yrs since they put me on this medication but how do I get them to hear what I'm saying? Im not just a number. Im 58 yrs old with kids and grandkids who love me. Don't I have any rights anymore?


Answer:
You absolutely have rights when it comes to selecting a disease modifying therapy. Doctors are trained to listen to their patients' concerns and incorporate their opinions and preferences into the decision making process. We sometimes disagree with our patients’ choices and will reasonably attempt to persuade and guide them to a choice we feel is more appropriate through further education and counseling. If there is a stalemate with the patient insisting on option X and the doctor disagreeing with this choice, you have several options depending on the degree to which you trust and respect the doctor providing the advise.

1. Draw up a list of pros and cons with your doctor and think about it a little more before making a decision
2. Ask to discuss all the options (not just aubagio vs Tysabri): see below
3. Ask for a second opinion from an MS specialist

You really need to know what is motivating your doctor’s opinion and you’re reasons for disagreeing. A common scenario is as follows:
You receive Tysabri for a period of time and feel great. Your doctor picked this treatment because you were JC virus antibody negative and it was the best treatment available at the time. 
After you started Tysabri more treatment options became available and your doctor learned more about the risk of developing PML when you receive Tysabri for more than 2 years. During the course of being monitored on tysabri for 2 or more years of treatment your JC virus antibody index became high (greater than 1.5) . You are now at an increased  risk of PML if you continue tysabri ( about 1 %). 

Your doctor now needs to decide if your MS is severe enough to warrant this risk of PML This is based on some facts and a lot of judgement. He or she needs your help to make this decision. Basically, you need to compare in 5 year intervals your risk of significant disability related to MS (?)  vs the risk of PML (1 in 100). If you just look at all MS patients, the data suggests that your quality adjusted life years (this is a measure that incorporates benefits and risks of treatment on quality of life) if your remain on Tysabri with a high JCV antibody index is about the same as an average MS patient receiving interferon treatment. Of course, you may not be an average MS patient. If your MS is worse than the average patient, then it may be worthwhile staying on Tysabri. 
You and your doctor need to come up with a probably of significant disability (or problems unacceptable to you) in the next 5 years and determine the best course of action

Options include:

1. Increasing the interval between Tysabri infusions to every 8 weeks with more frequent MRI monitoring to detect PML early. There is mounting evidence that this strategy may be effective. For instance, if PML is detected by MRI before the development of symptoms, the chance of  disability is low and the chance of death is 1 in 30. If PML is detected after neurological symptoms develop, the chance of disability is very high and the chance of death is 1 in 3. Therefore, those at higher risk of PML need to get an MRI scan every 4 months
2. Switching to another therapy of which there are many choices besides Aubagio. Some of these choices may have their own risks to discuss with your doctor

Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego