I’ve always disliked change. I like things to be predictable, and I like feeling in control. I want to know what I’m responsible for and be able to plan my immediate future with some degree of probability. I also like to finish jobs and cross them off my list. Change doesn’t come easy for me, but I eventually adapt.
This week has brought a lot of change. Ever since Lynn was originally diagnosed with MS, he has participated in a study whose purpose was to determine if taking Copaxone along with Avonex would reduce occurrences of exacerbations. There were three groups; one got Copaxone and a placebo; one got Avonex and a placebo; the other got both drugs. We found out that Lynn was in the group that took only Copaxone. Now that the study is over, he has to decide what he wants to take as a medication. His doctor feels he did not do well on Copaxone because his condition declined rather quickly in those five years. Tough to say if it was the MS or the long hospitalizations, but he certainly has a lot less function now than five years ago.
Now, he has three medication options to consider–Rebif, Betaseron, or Tysabri. None are good choices for someone with the probably progressive disease rather than relapsing/remitting, so it’s a matter of which will do the least harm. Betaseron can cause liver disease, thyroid disease, seizures, bleeding disorders, anemia, and depression. Rebif can cause liver disease, seizures, congestive heart failure, thyroid disease, and depression. Pretty much the same as the other one, but there is the risk of heart failure instead of anemia, and you take it three times a week instead of every other day. Tysabri, on the other hand, can kill you. It may cause a serious viral infection of the brain that leads to further disability and death. Supposedly, a test will help determine who is susceptible to the viral condition, but it’s no guarantee. Therefore, he’s not inclined to take that one. Unfortunately, that’s the one I think his doctor wants him to try. I believe he thinks it might work better for him. It’s Lynn’s decision, but as I write out the side effects, I’m not thrilled about them. I, too, lean more toward the Tysabri. Lynn will not consider it now; however, Rebif will probably be the one he chooses.
Rebif makes you feel like you have the flu for about 8 hours after you take it, according to the literature. So three days a week, he will feel lousy…oh, joy. Not only that, I’m waiting to find out just how much the insurance will cover. It costs around $30,000 per year I understand without insurance. Who has that kind of money? I know the drug companies offer assistance but I’m expecting big dollar signs in our future. I sure hope my insurance will cover the majority of it!
The other change I learned today was that we are no longer approved for home health visits. We have 90 visits per year. Lynn tried spreading them out so they would last till July when the number increases again. Instead, they were cut off completely because he was not using them as much. Now, I’ll have to call and try to persuade them to reinstate the number that was left. Just one more challenge to face. If they don’t allow us to get them back, then I guess we’ll see if he can do outpatient physical and occupational therapy. That means three days a week driving an hour each way to therapy, paying $5 to park each day, and taking, at a minimum, three hours out of our day… more since there’s all the preparation time and then “re-settling” time afterward. I don’t see how I’ll be able to keep up with work with all those trips. I’ll have to find a way, I guess.
Speaking of work…I’m busier at work. I go in only one day a week for about three hours, but on that day, I get nothing done due to the travel and the fact that everyone wants to talk to me while I’m there, so it takes me more hours to stay caught up. I’m working seven days a week to keep up. If we have to start going in for therapy…well, do the math. On the other hand, there is more therapy equipment there; maybe he’ll do better and get stronger faster. We can always hope.
I admit I’m overwhelmed right now by all the changes to consider. I know we’ll adapt, and it will become our new normal, but it sure would be nice to coast for a while.
