Jan 152005
 

There have been some comments to the blog that I have found interesting.

  • Sue posted about her Mannatech experience. Yes, this truly is the post of mine that is never going to die!
  • Anonymous posted that he has had good luck with Jolley Roger hard candy with the Solu-Medrol taste. While I am hopeful that I have taken my last dose of Solu-Medrol, I’m sure that isn’t the case; and I certainly hate the flavor in my mouth!
  • Kim chimes in on the Curry spice. Tumeric is what I’ve always heard should be taken for MS, but it is used in India so we know it must be good! Kim seems to confirm what I thought.
  • An anonymous post that their very first installment of Tysabri went very well. Hopefully anonymous will drop me an email and let me know how the treatment is working out.
  • MikeR wrote about the potential of taking Tysabri at home, but Biogen isn’t recommending that at the moment. Yes, I am interested if/when I start taking Tysabri; but why the heck aren’t they recommending home infusion, is there some danger with the infusion???

Well I guess these are the major highlights of recent comments on older posts.

  4 Responses to “Some Recent Comments”

  1. It is my understanding that the first several infusions of Tysabri are given in a medically supervised setting in case of anaphylactic shock. Once you have demonstrated you are not allergic, home infusions may be possible.

  2. Hi Erik,

    I have been lurking on your post for a few weeks. Thank you for sharing your MS experiences with the world. As a mother, it is refreshing to see that your MS diagnosis does not define you. For that I am happy.

    My 19-year-old daughter was diagnosed with MS in late April. She has had three flares since diagnosis and experienced elevated liver enzymes from Rebif, thus eliminating the use of the interferon meds. She was begun on Copaxone in September and currently will remain on this med.

    She has had two doses of Tysabri, both of which went well. She currently is looking and feeling well. This after experiencing a flare every two months up until this point. It has not been two months since her last flare – so we are guarded.

    I was thinking that for my daughter, it isn’t an infusion of Tysabri as much as it is an infusion of hope slowly dripping into her veins.

    I am also an RN and yes eventually the Tysabri may be available in the home, but initially you would really want to receive it in a health care setting. There is more to watch for with any type of IV infusion, especially initially.

    Good luck to you and others as you struggle to decide which medication is right for you.

    Donna(Mother of a 19-year-old with MS)

  3. Turmeric is an ingredient that is found in most curry spices. So if you eat curry (esp. indian curry), then there’s a good chance you are eating turmeric.

    http://www.apinchof.com/curry1008.html

    -matt

  4. Donna,

    I hope your daughter will get better very soon. I am so sorry to hear that she was diagnosed so young, but I am very hopeful that Tysabri will be a viable solution for her. The first while after being diagnosed is really hard. Hard for the person diagnosed, and for those around them who love them so much.

    I am saying a prayer for your family. Hang in there, and I know that things will get better soon.

    Brandy

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