Starting MS meds- Step 1

Starting MS meds- Step 1

Starting medicine for multiple sclerosis is not as easy of a process as one may think.  Typically when you go to the doctor and find out that there is something wrong, they pull out their handy dandy tablet computer and scribble type something, and then you drive down the street and pick it up.  Well I found out that this is not the case with prescriptions prescribed for multiple sclerosis.  These meds are not the typical prescriptions that are available from the local pharmacy.  MS meds are “specialty prescriptions” that are only available from the specialty pharmacy. I learned that this process was quite lengthily so I’m going to break it down into the 3 steps. 

Step 1- Figuring out what to take

Step 2- Insurance, Red Tape, Waiting Game

Step 3- Starting the Medicine

So this is how my journey to starting medicine went…

During my follow up visit with my doctor, she told me to look over the different types of medicine that is offered to help manage multiple sclerosis.  Ok personality I thought that was a little strange…Call me old fashioned, but up until now my doctors have always diagnosed what is wrong and then wrote a script.  I never gave a second thought what they were giving me. I guess I figured that the doctor would be the one telling me what I should take.  She did, however,  give me a starting point with 3 different medicines to look up.  My research went something like this:

o  Medicine #1 – Injection…Yep that was all I needed to know about that one. (Remember I have a HUGE fear of needles) That one immediately was crossed off my list. 

o  Medicine #2- Oral Pill… So far so good… It helped to reduce the signs and symptoms of multiple sclerosis and helped stop new lesions on the brain and spine (helped to reduced flare ups).  Yep I liked the sound of that. 

o  Medicine #3- Oral Pill… Again so far so good… It helped reduce the effect of long team disability and help current lesion from getting larger.  I liked the sound of that also. 

I am by no means a doctor, but from what I can understand from my google research one med helped now and the other helped down the road.  How am I supposed to decide? How am I supposed to choose between what is happening now and how mobile I want to be in the future.  Can I just take both?! I obviously knew that was out of the question.  So next I looked at the possible side effects.  Have you ever really looked at the side effects of medicines????  If you have not…don’t start! So after I got a little freaked out that one of them could possibly cause my heart to stop, but that was really only during the first 8 hours after taking the first dose, I decided to look at how they monitor the medicine.  They both required about the same blood work…great.  So after hours of research I am even more confused than I started. 

When I went back to the doctor she told me that she would like to start me on Gilenya, an oral pill.  I had to chuckle because after hours and hours of research and worrying about which medicine I was going to try, that was the one that I wanted to try.  And by try I mean just that try.  The way that the MS meds work varies by every person.  So no one knows IF a medicine WILL work or what possible side effect(s) someone may get until they give it a try. 

Ok I was good and happy with the decision to start Gilenya.  I was fully expecting to leave there and start this magic pill and everything would go back to normal.  This is when my doctor informed me that this was just the first step in starting the medicine.  Our next step was to hope, and pray, that the insurance would approve. 

On to step number 2…