Finding the Right Medication

The struggle of finding the right meds. 

Even after I was officially diagnosed with MS, the struggle wasn’t over. In Fact a new struggle was just beginning. Seeing the process American insurance companies make doctors go through is just insane to me. My insurance company fought tooth and nail to try to get me on cheaper, less effective medications, Because of how severe my presenting symptoms were my doctor fought to get me on the therapy he deemed appropriate, but still my insurance fought it and denied his appeals until they eventually had to relent, 

 Even though this was considered to be a stronger therapy, It didn’t seem to make me feel better after a few months. I contacted the doctors office, to let them know the therapy was not  working as intended. They assured me that what I was feeling was normal, and had ne continue on the medication for a few more months. I continued to voice my concern the medication wasn’t working, because I was still sleeping 14 hours a day. This commitment to advocating for myself led to my doctor ordering a blood test to check for antibodies that would have made the medication ineffective. These antibodies could only develop after being on the medication for a few months, and the percentage of patients who developed antibodies was very low. The results of the test came back and I was positive for the antibodies (lucky me). At the time this was the strongest FDA approved medication to treat multiple sclerosis. My doctor decided to take me off label and Have me use a medication that was used to treat  a specific form of cancer, though it was used to treat multiple sclerosis in Europe at the time. 

This was one of the first times I had actually experienced what Life would be like on a working MS med. Life wasn’t necessarily great, but it was as good as it was going to get. Twice a year I would make my way to a hospital in a different city to receive an infusion of aa medication that was stopping my immune system from attacking my body, The infusions would take a full day, and It was odd how stressful just sitting in a chair, or laying in  a bed, could actually be. 

 I continued on this med for a few years before a new medication was released onto the market. It was a once a month medication that was in an auto injector pen that meant I could administer the medication at home. I was ecstatic to not have to go to the hospital twice a year to receive an infusion that basically took the whole day. The medication seemed to work very well for me, that was until the COVID pandemic reached the US. I was diagnosed with covid on three separate occasions showing the medication may be interfering with my immune system’s ability to produce antibodies. As a result I had to change medications again, for my own safety.

 This time I switched to a medication that was taken orally once a year. The month after the dose was one of the most difficult months I’d experienced with any form of MS treatment.  I was absolutely exhausted, sick to my stomach, and struggling with various other symptoms, like migraines on an almost daily basis. This made me worried about how I was going to survive a full year feeling like this, but eventually I started to get better and saw many of my symptoms evaporate. I slowly started to get better and better. Granted I was still classed as legally blind, because of the damage that had been done to my optic nerve, and I was still dealing with other MS symptoms, but they were getting farther between episodes, and less intense. 

I have been on this therapy for three years now, and I still struggle with fatigue, muscle weakness, and pain; but I have felt the best I have felt in years. THe struggles of finding the right medication may have taken years, but eventually we did find the right therapy for me. 

If your doctor recommends a medication and you aren’t getting the results you want, don’t be afraid to tell the doctor how you feel. It takes some self advocating, but that’s a skill I learned from this whole crazy debacle. Remember that only you can fight for yourself when it comes to dealing with medication changes. If you aren’t happy then talk to your doctor and see if there is something that can be done. If they don’t listen the first time, then you just have to keep fighting.