I finally had the follow up appointment with the neurologist. I had myself all worked up before hand, to the point of tears. They sent me information about medication. All the meds were injections. I don’t do real well with needles. When I was in the hospital I kept a blanket over the IV site. I don’t know that I can give myself a daily injection.
Plus, honestly, I was a bit pissed about the whole thing. You know one of my main reasons for losing weight? I didn’t want diabetes and to have to give myself shots! And now, I might have to?
I was reading so many stories about people who were spending $500+ a month on medication. We don’t happen to have a spare $500 a month lying around.
So, the options seemed to be, give myself a shot every day and make us bankrupt, or do nothing and end up in a wheelchair.
I went to my appointment. Can I just say I love this doctor. He said I was doing much better with balance. We sat down to talk about meds. He asked if I was leaning toward anything. I said “Well, I hate needles, so, the one with the fewest shots is the one I’m leaning toward.” He said “Ok, what about pills?” PILLS?!?!?! I said I didn’t get any info about that. He thought for a bit and said “Oh that’s right, your case is pretty severe and the injections tend to be a stronger dose of meds, that’s why I sent you that info. But, you can try pills first and see how those work for you, we can try something else later.” And then he sat down and wrote out the names of all the pills, what they did, what this meant for me (some require follow ups for awhile), the pros and cons,etc. Answered any questions. Brought up price, didn’t tell me the price, just that many of them had help to pay for them because they are very expensive.
Then, he started telling me about a brand new drug…just was approved last month. His office was one running trials. 22 of his patients have been on this since 2003. And, not one relapse. And, only one patient is on any other drug to control symptoms. He said he never even hears from the others about problems. The first dose is IV, 5 day hospital stay, monitored every month. Year 2 is a 3 day hospital stay, monitored every month. After this, you are still monitored every month for 4 yrs total. And, that’s it. Forever, hopefully. With the other drugs, a couple relapses a year is normal. They don’t stop the symptoms, just the progression (or slow it down).
I was pretty excited about this. I asked who was a good candidate for that one. He said “You. You are the perfect person. They are only using it on severe cases, and yours was pretty bad. The FDA though doesn’t want it to be the first course of action, because there are some pretty nasty possible side effects, but that is why we watch you so closely. They want you to try and fail at one or two other meds first.” I said “Well, then I guess I better pick something to start failing while I do my research on this other drug.”
The course of treatment is $160,000…so, see, plenty of time to fail at all the other drugs while we try to convince insurance to cover this. Unfortunately, that most likely means a couple relapses, because the lesions aren’t just in my brain, they are in my neck and all down my spine.
I came home in a much better mood than I left in. I started some research, I thinkI decided on what meds I’ll start out on. But, again, price is a concern. Brad started looking up the info…and it’s our regular copay. Thank God.
So, my options are (worst case scenario here)
injections with a side effect of suicide, but they work well while you are alive.
Pills that don’t work as well and make you look worse (acne, flakey skin, hair loss, weight gain)
An IV treatment that will either make the MS stop or kill me.
Or nothing, and hope for the best, with the side effects of paralysis and/or feeding tube.
More research is needed.