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, be able to plan my immediate future with some degree of probability, and I 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; and 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 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 there’s a test that 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 any of them but I, too, lean more toward the Tysabri. I am sure Lynn will not consider it at this time; however, so 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’s going to 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 found out 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, because he was not using them as much, they got cut off completely. 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…actually more since there’s all the preparation time and then “re-settling” time afterwards. I just don’t see how I’ll be able to keep up with work with all those trips. I’ll just 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 and maybe he’ll do better and get stronger faster. We can always hope.
I admit I’m overwhelmed right now with all the change to be considered. I know we’ll adapt and it will be become our new normal but it sure would be nice to just coast for a while.