Hello Aubagio!

I said a not-terribly-fond farewell to Avonex a month ago, and today I received my first shipment of Aubagio. I guess I should not have been surprised at the small package, but of course it is only a few pills. Exactly 28, to be highly exact. I find that annoying, because a prescription should be for 30 pills--30 days. With 28 pills in the pack, I will need to refill it more often, which means paying a bit more each year. Whatever, at least I have insurance.

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If any of you MSers stumbles across this blog, it took exactly three weeks for my insurance to approve Aubagio.

I am excited to begin taking this medication tomorrow! And I have an appointment at the MS clinic. Good timing. If I have any odd side effects, I will be there. But I doubt anything serious will happen, because Aubagio is not associated with serious, acute side effects.

My appointment tomorrow is the kind I like yet do not like. I will have neuro exams by my neurologist, Dr. Rick, and by someone else. I have not met him (or her?). I hope he is more personable than the Asian chick who freaked out because I told her that she had started her period... on her skirt. Hehe, that loosened her up a bit. I also have cognitive testing (brief) and the usual bloodwork. Also questionnaires. All of that will allegedly by done in two hours. Bulllll.....

I like to have the testing done, because sometimes I surprise myself with what I can and cannot do. I am introspective and analytical, so I nerd out on data. But I do not like this kind of visit, because they will probably make me do the walk. MSers know this one: walk until you go 500 meters or drop, whichever happens first. And I have made the 500 meters every time, but it is by the skin of my teeth. I am totally wiped out after that. That is when I CBT myself: I can stay if I am too tired to drive. But of course I never stay, because when I am worn out, I just want to lie on my couch at home.

Good-bye Avonex, Hello Aubagio

So much to say!

I went for my regular appointment last Friday and ended up dropping out of the study. Avonex was not a good fit for me--it is obviously not helping.

My neurologist gave me the choice of Copaxone and Aubagio as the next logical steps. Let's see...

Copaxone
-On the market since 1996
-Daily subcutaneous injection (although the manufacturer is applying for FDA approval of a higher dose given three times per week)
-Immunomodulator
-Commonly causes site reactions like pain, redness, and hard lumps
-Commonly causes fat breakdown under the skin, making your thighs and stomach dimply
-Can have cardiovascular side effects, along with many others
-May reduce relapses by about 30%

Aubagio
-On the market since October 2012
-Daily pill
-Can cause abnormal liver tests and hair loss (but apparently not a ton of hair loss)
-May reduce relapses by about 30%

I chose Augabio. Wouldn't you?

My neurologist is not confident that anything is going to work for me. He said that my disease characteristics are similar to a subgroup that do not respond well to anything. Tysabri is a possibility in the future. I am JC positive, which puts me at higher risk for serious complications, but I would still try it. Matter of fact, I would try it now. Some people actually feel better on it. The best I can hope for with other meds, including Aubagio, is to feel the same and get worse less quickly than I would otherwise. Another medication I could try is BG-12, which is an oral medication expected to be FDA-approved early next year.

That is not the only med change up for me. He is transitioning me from gabapentin to Lyrica, reducing my tramadol (I know: huh??), and trying Celexa instead of Cymbalta. I am still open to trying Cymbalta in the future if the start-up phase were slower. He did give me a low dose of Celexa, 10 mg. I started it yesterday. It makes me feel weird in a not-good way. And I think it makes me feel sick. But that is hard to say, because I also have...

New pain! In my face! It began on Wednesday or Thursday and was about a 6 until it suddenly shot up to 8-9 yesterday and 9-10 today. Seem to be trigeminal nerve pain. Ironically, it is commonly called "suicide pain." Like I need anything else to make me want to leave earth. Here is where the pain is...

See the orange lines? My pain is along the one going straight up, the one going to the eye and up to the forehead, and the one going along the cheek to the upper teeth. It feels like someone is stabbing me in the face with a hot poker. My right eye itself kind of hurts, but the really bad pain is above/behind it. It also hurts on the ganglion, the area where the white label line is pointing.

I drew on my face with eyeliner, showing where the pain is, and I emailed a picture of that to Dr. Rick and Alyssa. I know they are not working today, but maybe they will see it tomorrow. If not, I will call.

Otherwise I am the same. My burning pain is holding steady around 6-8. My left foot is killing me, has been all week. That might be getting worse, actually. It is not bad right now, maybe a 6, but it has been hanging around a 9. My walking is the same or maybe better. I had a sore throat this week, but it is tons better yesterday and today.

Today my hands hurt, but not the skin. Feels musculosketal, so I doubt it is from MS. Maybe from Celexa.

I am going to try icing my face...