Sunday, October 24, 2010

6 Month MRI

Friday was that time of the year again. Time to have an MRI.

In July 2008, I switched MS drug therapies. I now take Tysabri, a once-a-month IV, and I'm very happy with it. But it does have it's draw backs. Tysabri is an immunosuppressant, an the largest risk of taking it is contracting PML, a potentially lethal brain infection. While the chance of getting PML is relatively small, it's higher than the general population. The only way to monitor it is through MRI's. So I have one every six months.

The Results: No change. I saw the pictures myself. A bit depressing because I was hoping my body would have at least started healing the existing lesions by now. BUT the good news is that there are no new lesions and there haven't been since I've been on the big T. I can't complain really, because I can still function. I don't have any pain. I don't get too exhausted. There are some limitations, but overall, I'm doing good.

Because I'm doing so well, my Neuro and I talked about increasing the time between Tysabri infusions from once a month to every other month. Tysabri is the most powerful MS medication currently available. Because it's so strong, they're trying to determine if reducing the the number of infusions in those who are doing well will still allow the meds to offer protection while reducing the risk of PML. This decision will, of course, take into consideration the newest recommendations based on the most recent research. So we'll see if there are any changes in protocols over the next six months.  We may also change the frequency of my MRI's from every 6 months to once year depending, again, on the potential to get PML based on the newest research.

I'm now "participating" in a study to see if there's a link between having been exposed to the JVC virus (which causes PML) and getting the disease. I say "participating" because it's only a blood draw once a year for three years. But I hope it helps.

I also talked to my Neuro about the new MS pill that was recently approved. I like to keep on top of what's going on with MS. As excited as I am about the advances that are being made, the side effects of this new med is a reason for me to hold off (even thought I have no desire to switch drugs). I mean, if the first time you take the pill, you have to do it in the doctor's office so they can monitor you for SIX hours, well, the risk vs. reward seems a bit skewed to one side.

We also talked about stem cell research, but I think I'll post that discussion in another post. This one has gone on long enough.

3 comments:

  1. Adhesion molecules are promising candidates to establish surrogate markers for natalizumab treatment. [Mult Scler. 2010]
    http://www.ncbi.nlm.nih.gov/pubmed/20937631

    Has your neurologist advised you as to diet, MS, & Tysabri?
    Have you asked?

    ReplyDelete
  2. No, he hasn't. And no I haven't, but I will next time I talk to him. Thanks.

    ReplyDelete
  3. maggie.danhakl@healthline.comJuly 7, 2014 at 7:24 AM

    Hi,

    Healthline just launched a video campaign for MS called "You've Got This" where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.

    You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this

    We will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos we'll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.

    We would appreciate if you could help spread the word about this by sharing the You've Got This with friends and followers or include the campaign as a resource on your page: http://heysus74.blogspot.com/2010/10/6-month-mri.html

    Please let me know if this is possible and if you have any questions. And, if you know anyone that would be interested in submitting a video, please encourage them to do so.

    Best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

    ReplyDelete