GilenyaGilenya is the name of the medication I am taking for my MS. It is the only MS medication that is offered in an oral form, as most of the medications are made of proteins and such that require injection to get past the digestive track of our body. It is a relative newcomer to the game, having only been out of clinical trials for a few years. On choosing the medication, well, my neurologists let me do some reading on things and then along with my feedback this is what selected for me. I must note, that this feedback of my input really does make an impact in my mind in regards to what kind of Doctor is best for me.

In considering the medication there was really two that were strongly being considered by the Doctor, the second being one of injections (clearly) called Rebif. My exploration and research into the two drugs indicates a couple of common things. First, at least as far as what I have been able to read, they both are not truly understood in how they work. There is a lot of suggestion and even some science that would tend to back some suggestions, but it is not conclusive. I suppose that is to be expected given that there is not a clear understanding of what causes MS to begin or even a total and complete understanding of how it goes about doing what it does.

A second big commonality is the cost. Let me just say that right now I am very thankful for having pretty good insurance through my employer, even if my amount that I pay into the thing has steadily gone up by double-digit rates over the last several years. I have still not found an actual amount on the Rebif, but based on some numbers I have seen I believe it would be in the $2500-3000 range for a monthly dosage to purchase outright. The Gilenya, if you can believe it, without any kind of support would actually be $4000 monthly. Amazingly that works out to $142.00 per pill.

Now I understand that drug research is expensive and there is a limited time between when a drug is first approved and it can be copied in a generic form. However, this is beyond the ridiculous in expense and markup. It is even more so given that it is not a disease or drug that anyone chooses, but rather something that strikes randomly and is a pain the behind end with which to deal. Keeping in mind that MS does often lead to disability, I think about the mess we call Medicaid and Medicare and it no wonder with these kind of tactics that the system is broke, both not working and in regards to money. Thank about it, to purchase this medication straight out you would have to clear $48000 year above and beyond what your living expenses are. Keep in mind the average annual household in 2006 was just over $50000 and that the average one person in the household was closer to $26000. Basic math says things are totally unsustainable in such a fashion.

It is things like this that make me, against my more general tendencies, think that social healthcare systems might be a better option that what we have currently. Of course that is a rant of a different color and not where I was wanting to go today. I am still not sure at this point how things are working out with my insurance and what amount is being covered. I have gotten several different numbers over the past month while getting everything set up and started. I am sure in the coming few weeks I will have a much more accurate picture, but I know they are covering a large percentage of this drug expense at this time.

That is good at this point, leaves me with the bigger worries right of getting into the regular habit of taking a daily medication. As of this time I have not missed any daily dosages but it has been somewhat a sporadic schedule of when I have taking the things during the day while I am trying to recall and work it into my regular routine. I would not think this would be so hard, having been on penicillin twice a day from the time I was ten until about eighteen, but given over twenty years in between it is a habit that hard to get reformed.

** – Gilenya image from Gilenya website.

*** – Originally published on, July 1, 2011.

Six Hour Dr. Visit

MS SocietyToday I am spending the next six hours in the Doctor’s office. A specialist office at that. That seems like a long time but mostly I am just here for observation as I start a medication to ensure that some noted side effects do not occur. Six hours seem like a long time and to be sure, it is (thankfully I brought the laptop and the iPad to occupy my time). Six hours though is really nothing compared to the time I have spent in the Doctor’s office and especially various labs since early April. It is a bit of a long story, but clearly I have the time and it seems somehow appropriate to start the story here on the blog the day I am starting the medication for my life with MS. Continue reading “Six Hour Dr. Visit”