A Change Of Plans

Well, I didn’t get this post out a few weeks ago as I had planned but here is it so let’s get right down to the good stuff. I will not be going on Gilenya as I had originally planned at the beginning of this year. I went through all the testing, specialists and doctor’s visits that everyone needs to do to go on Gilenya to find out at the end that my EKG found a first degree AV block. Sounds a little scary but turns out it is not that uncommon and usually is not even treated. Mine was actually probably caused by all my endurance training. Even though mine is probably harmless there have been at least 11 people now that have died while on Gilenya. At this point they are not sure how much Gilenya played a factor in the deaths so my neurologist wanted to just play it safe and said no to Gilenya. Which I appreciate but did make my month of February a little rough.

Of course my neurologist wanted me to come back in to discuss other options of treatment since I do not want to continue on Tysabri even though it stopped my progression for a year.  I just don’t like my chances of getting PML. So the choices they gave me were:

1) interferons – however since Copaxone didn’t do anything for me, in their opinion, it is pretty likely that interferons won’t either plus I have heard about not so fun side affects of interferons so I didn’t really like that option.

2) Rituxan – another infusion which is mainly used for RA and chemo however it is not FDA approved for MS so can be hard to get the insurance company to cover it. Plus side is it’s only four infusions a year, down side there is still a chance of PML but seems to only occur on Rituxan when the patient is on another immunosupressant at the same time.

3) IVIG – A infusion of donated antibodies that sounds like it was from a scifi movie. I got the impression that they wanted me to consider it as a very last resort.

I knew when I left the doctor’s office that I was fairly sure I was going to go with Rituxan however I wanted to think about it. Well, the next few weeks I sort of went into my own world. I guess I just started pretending everything was ok and ignoring my dilemma at hand. Whenever I did think about it I was always sure I wanted to go on Rituxan but just didn’t want to tell my doctor’s office. Guess I had to have time for it to sink in or something. I did have some “melt downs” about it, I think I just wasn’t dealing well with my plans being changed on me. For a whole year my plan was to be on Tysabri then probably switch to Gilenya and that had all just blown up. Now my options were still not great if I wanted to continue on treatment. This was probably one of the first times I had even somewhat considered not being on a treatment or at least more understanding of why some people might not be on a treatment. For me I still feel I need to be on a treatment. I am 28 years old and without medication my left side would be fairly painful and numb. Just not acceptable to me if I can do something to help it. I did end up confirming a few weeks ago that I would go on Rituxan and even then I really had to make myself do it knowing it wasn’t good for me to be off a treatment for very long. I don’t know when I will start yet because it is still in the insurance approval stage but hopefully will happen in the next few weeks so doesn’t get too close to my marathon on April 28 in Louisville, KY. I did 15 miles this past weekend and suppose to do 16 this Saturday so have been staying on the training schedule fairly well. Just hoping my allergies start doing better soon so the run goes well. My body has really been dragging this week on runs.

Going to end this long post, this was a lot of information to go through so didn’t say some things I wanted to but sure I will add them in a later post. Feeling a little better about the situation so was finally able to actually sit down and write about it without trying to ignore it.

7 thoughts on “A Change Of Plans

  1. That is tough when it feels like there are no good choices! For what it’s worth, my dad hated Interferons. Said that treatment was worse than the disease. For Crohn’s we have the antibody infusions, called Remicade. Originally for RA, Remicade is considered “the biggie” in treatments. Doc tells me it is serious stuff. Would mean no pills for me but after today’s checkup, doc wants to keep me on good ol’ Imuran. I’m on a relatively high dose for my body weight but it’s done right by me for six years and I am off mesalamine so no worries I guess. Imuran also got cheaper last year! Knock on wood I’ll keep doing well. I hear ya about the allergies! Stupid dogwood trees… Keep kicking!

  2. You are so correct to be concerned about medicines. I will capsulize it. You already “know”. In my book, “I’m Not Drunk…I Just have MS”, I talk extensively about the choices. In short, no available med even purports to cure the disease. They each claim to treat some symptom. I explain in my book why this is such a farce. The pharmaceuticals continue to make billions. They are no closer than they were when I first saw my neurologist in December of 1992. Like then, “the cure is just around the corner”. All of them have side effects, some more serious than others.

    I never took meds. I worked hard, walking over eight thousand miles. My symptoms are gone along with the plaque on my brain. It has not returned for years now. That is why I wrote the book. Go to http://www.myMScure.com to read the first chapter and order if you like it. My path to MY cure is laid out in great detail. I have been under the care of a top neurologist all of this time. I did not use meds..

  3. I hope that you got my comment last evening. I can’t tell. Once more. None of those meds will cure you (and probably won’t make you better). They definitely will have side effects, all of them. Be true to you, don’t take any of them. Keep running. I have done over 8,000 miles and my MS is gone, including the plaque from my brain. And never any worthless MS meds.

  4. Hang in there. Choosing a treatment (or no treatment) is so stressful, but it sounds like you’re at peace with your decision; which is most important. And good luck with your marathon! I’m running the Chicago one again, but will start training in May… and then I’ll be putting in those 16 mile days like you 🙂

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