The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Friday, January 19, 2007

Thanks for everyone's concern in what's going on (except Roger's Market--dang comment-marketers!)

I completed 5-days of IVSM (outpatient, going in once a day). I am now on a 10-day taper dose of prednisone. My mood sucks. While I am not the calmest person and can have a temper, I find myself boiling mad--with my husband, drivers, people at the grocery store, etc. I understand this can be a side effect, and I am not using it as an excuse; just trying to manage it. So, I am using my Ativan (usually for anxiety) to manage that.

I don't think I have optic neuritis, per se. But I was having double vision and now feel kind of out-of-focus. I got so frustrated while grocery shopping last night (which doesn't help the mood swings) because to read things was difficult. My husband said the wrong thing to me when I said, "I can't see!" He said, "Then do something about it!" I screamed, "I CAN'T do anything about it." He finally got it, but I think that is what makes it frustrating, that it isn't as simple as going and getting a new RX for my contacts.

As for switching to Tysabri. I know it is a huge decision, one I am not taking lightly. I am having my MRIs mailed to me and will likely see another doctor to look over them. The nurse was encouraging about this, but also warned me that it could become confusing, seeing as I could visit 5 doctors and get 5 opinions.

The risks of Tysabri don't freak me out, really. My questions revolve around how long is Tysabri for? My doc mentioned short-term, maybe a year, but this sounds atypical. How long does it have to flush out of my body before I say...start a family. There's no big rush on that one, but I want to make sure it's not like waiting two more years to even talk about it, after stopping. Also, regarding the other drugs, I want to ask about if the other CRABS would be more effective. I mentioned Copaxone, and was told no, since it's not an interferon (hence, why I thought it might be more fruitful). My understanding is that Avonex and Rebif (which I am on now) are the same interferons, so I don't know how much of a switch we would see.

So, as I said, I have a lot of questions, and it's not like I am starting the big T tomorrow, or next week, for that matter.

Today, I am going to my family doctor to talk about bone density. I don't think I am having any issues, but I know a few people lately whose bones have had adverse reactions to steroids--and not tons and tons of them, but to an IVSM treatment or two. Osteopeania, osteoporosis, and AVN (dead bones). Since I have had steroids twice in 10 months, I want to make sure we are keeping an eye on this.

So, that's all for the update. Today, I am on day two of the prednisone taper. I am trying not to be Miss Piggy, realizing that all the food in the world will not make me feel less hungry. And I have yogurt, apples, strawberries, etc to hopefully help along the way. (But wouldn't pizza taste so much better?!)

Thanks again all.

4 Comments:

  • At 9:45 AM, Blogger mdmhvonpa said…

    "oday, I am on day two of the prednisone taper. I am trying not to be Miss Piggy, realizing that all the food in the world will not make me feel less hungry."

    Yeah ... that's a tough one. I found that there is such a thing as TOO MUCH fruit and veggies in my attempt to squelch my raging hunger. What a disaster!

     
  • At 10:46 AM, Blogger Heather said…

    Oh yeah, that can hurt. I wasn't on steroids, but ate nearly a whole pineapple. One word: burning!

     
  • At 5:31 PM, Blogger Lauren said…

    Hi Heather, my name is Lauren and I have a running Tysabri Diary (up to infusion #4, woohoo!) on my Blog: http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/
    (Charles and mdm post there too - heehee)

    A friend of mine and I were helping a "newbie" on a MS board re: IVSM treatments, we were reminising and laughing about our rollercoaster emotions, that's in my Blog too..'roids suk, but when they are out of your system, you really gotta look back and laugh at yourself (wink).

    I'm not a dr (nor do I play one on TV-lol), but if you have a lesion near your optic nerve, are having blurred and/or double vision, in all probability, it's optic neuritis...but the steroids should help that temporarily.

    "As for switching to Tysabri. I know it is a huge decision, one I am not taking lightly. I am having my MRIs mailed to me and will likely see another doctor to look over them. The nurse was encouraging about this, but also warned me that it could become confusing, seeing as I could visit 5 doctors and get 5 opinions."

    If your treating physician is recommending Tysabri to you, it's probably because he's seen your MRI's, knows of the new lesions, and that you're failing the interferons - and therefore need Tysabri's 68% superior efficacy in stopping the relapses with accumulating disabilities, and stopping the disease progression.

    "My questions revolve around how long is Tysabri for? My doc mentioned short-term, maybe a year, but this sounds atypical" There is three year data to support Tysabri's efficacy - See: http://www.elan.com/News/full.asp?ID=910437.

    How long does it have to flush out of my body before I say...start a family.

    Tysabri leaves the body between 7-12 day after being infused, but it's long-lasting benefits have been sustained in some patients for up to 4 months. There is no current data re: Tysabri and pregnancy...See the Tysabri label-pages 10 & 11.

    "..regarding the other drugs, I want to ask about if the other CRABS would be more effective. I mentioned Copaxone, and was told no, since it's not an interferon (hence, why I thought it might be more fruitful). My understanding is that Avonex and Rebif (which I am on now) are the same interferons, so I don't know how much of a switch we would see.

    Actually, Rebif is stronger (higher dosage) than Avonex - even though it's the same beta-1a interferon. Copaxone is usually prescribed due to the side effects of the interferons, but Copaxone takes about a year to become effective (if at all), and since you are having new lesions now, you'll be at risk for having even more while waiting for it to kick in, if it does at all. Seems to me Heather, your MS is either highly active or aggressive now :(

    "But wouldn't pizza taste so much better?!" You betcha girl!

    No matter your choice of therapy, I wish you much love, improved good health and happiness Heather, now and in the future..., (((hugs))) Lauren :)

     
  • At 5:23 AM, Anonymous Anonymous said…

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