MS and You – Hey Baby, what’s your Med?

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I am involved in a Clinical Trial for a drug based on Retuximab. According to Wikipedia:

Rituximab, sold under the trade names Rituxan and MabThera, is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. It can therefore destroy B cells. Rituximab is used in the treatment of many lymphomas, leukemias, transplant rejection and some autoimmune disorders. [http://en.wikipedia.org/wiki/Rituximab]

As a double-blind trial, even if I started out in the placebo group, I would eventually be moved to the real drug anyway. Every six months for a year and a half I went to the hospital for a full-day infusion treatment, starting with an MRI, then a steroid infusion, then the drug. I’ve never had a reaction to the trial drug, but the first time I had the steroid infusion I went straight into shock – I remember telling the nurse my ears were sweating! They ended up loading me up with saline and putting me on a VERY slow drip for the steroid, so my 8-hour infusion day took like 13 hours. I am incredibly grateful for the nurse, Shae, who stayed with me to make sure all was well for the whole treatment. It seems to work pretty well, with no side effects that I’ve noticed. Before treatment I was having episodes or attacks (what do you call them, anyway?) every three months or so that were severe enough that I missed work, or (my personal favorite) just scrambled my brain enough I couldn’t actually understand spoken sentences. I heard syllables but not words, and the first time it happened I was convinced I was surrounded by people who were not speaking English… but they were.

I am now in an observation phase of treatment, and I haven’t had a major attack (I generally got Optic Neuritis and tremors) for two years or so. I really hope this drug makes it to market, but I’ve heard the process can take years.

I hate taking pills, so I’m not taking as many supplements as my doctors would like. I generally take a multivitamin and a calcium/vitamin D supplement daily. A friend of mine just gave me Maca to start taking, but I haven’t noticed a change in my energy levels from that yet. It’s only been a couple of days.

So what about you? What are your experiences with treatments? What treatments, allopathic or naturopathic, are you using? Does it seem to work? What side effects does it have? Would you recommend it over other treatments you’ve used?

Please share! Click on the “comments” link below to get started.

Talk to me about Multiple Sclerosis

 

After my initial diagnosis I felt … shocked and isolated and VERY glad I didn’t have a brain tumor. I was told MS was an autoimmune deficiency that is different for every person. Can you imagine my surprise when I came across this video with another lady describing MY LIFE?

Please leave me comments on how you reacted to your initial diagnosis, and what you think of this video. I was terrified at first because I didn’t know what to expect, and I don’t want you to feel like that – you’re NOT ALONE in this, there are other people who have been where you are and WANT TO TALK ABOUT IT!

So please share.