Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Friday, July 11, 2008

My Tysabri Diary...

A very happy belated Fourth of July wish for all of you, I hope your holiday was safe and filled with good food (heehee). I made my famous barbecued chicken wings recipe, no-mayonnaise potato salad (the potatoes are parboiled and then grilled for a smoky flavor, mixed with grilled onions, bacon, blue cheese dressing and balsamic vinegar), and then I made my delicious carrot & raisin salad...., oh my goodness, everyone stuffed their faces...soooooooo yummy!

As I watched the spectacular fireworks display out here, I couldn't help but remember my MS friends who were never able to see the fireworks on Friday the 4th because they had lost their vision (or a majority of their vision) due to their MS. Because of this, I wanted to post the following link on my blog which is a short 3 1/2 minute video that explains How Tysabri Works. I thought it was fitting considering that not only does Tysabri prevent worsening of vision loss in patients with relapsing MS, Tysabri is also associated with significant reductions in the likelihood of sustained vision loss.

How Tysabri Works:

So, on to better is my 23rd Tysabri infusion report: I had my 23rd Tysabri infusion on Wednesday, 7/9... all went well, no problems, no surprises, and no terrible multiple "sticks"... one stick and my regular infusion nurse had a line in. I asked my infusion nurse how the other Tysabri patients in our small infusion center were doing, and she said they are all doing very well. So I really have nothing new to report.

In the interim, someone asked me a question regarding a friend of theirs that was recently diagnosed with MS, and their neurologist placed him on Avonex, which his friend really didn't want to go on, so he asked me this question: "Can my friend go directly onto Tysabri as a first line therapy? Or does he have to fail on a CRAB first? I just don't know what the TOUCH protocol is"..., my answer is yes, he can go directly onto Tysabri as a first-line therapy IF his neurologist recommends it (which obviously, his neurologist doesn't); there is also the issue of whether or not the patient's insurance would question Tysabri as first-line therapy, and the neurologist really has to convince the insurance company that 1) the patient cannot tolerate the other therapies [the patient is needle phobic], or 2) the patient has a highly aggressive form of MS and the neurologist does not want to wait and try the other ABCRs first.

The FDA clarified their response to Tysabri's use as a first-line and/or second-line therapy for MS...see:

Clarification article by the FDA regarding Tysabri's use as a first-line AND/OR second-line therapy for MS patients

First-line Tysabri therapy in some MS patients



SUBJECT: Errata to FDA Background document for the Tysabri (natalizumab) Advisory Committee on July 31, 2007
In the reviews, Tab 1 (FDA Clinical Review) and Tab 2 (Office of Surveillance and Epidemiology Review), it was stated that the MS population to receive Tysabri should be those “unable to tolerate or with an inadequate response to other available MS therapies” and it was stated that the indication was revised to “relegate it [Tysabri] to a second-line therapy for relapsing-remitting MS.” The indication in the current label states “…Tysabri is generally recommended for patients who have had an inadequate response to, or are unable to tolerate, alternative multiple sclerosis therapies.”

FDA would like to clarify to the reader that the MS indication for Tysabri was carefully written by FDA and the Sponsor to indicate that its use is
generally recommended for patients who have had an inadequate response to, or are unable totolerate [i.e., needle phobic patients] alternative multiple sclerosis therapies (e.g., as second-line therapy).

However, the indication statement
does not explicitly preclude the possibility of first-line therapy in some MS patients as part of the approved use. FDA recognizes that the health care provider needs to consider its use based on the unique circumstances of each patient.

So as you can see, it really depends on the neurologists' recommendation. If the newly diagnosed MS patient feels that a second opinion is in order (I mean really, Avonex is a once a week shot into the muscle and is only 32% effective at preventing further relapses/slowing the disease process down with horrible flulike side effects, whereas Tysabri is 67% effective with only minimal to no side effects for most of the MS patients, has proven data showing an 83% reduction in the accumulation of new or enlarging lesions over two years, as well as 92% fewer lesions during Tysabri therapy after both one and two years)..., he should contact MSActiveSource at 1-800-456-2255 and request three names and numbers of Touch certified neurologists near him so that he can make an appointment with one of them...he only needs to provide his ZIP code to them.

I hope that this information was of some help to that new MS patient. I also told him that if he decides to go with Avonex first, I suggested that he take a liquid Advil approximately 20 minutes before the shot, and ice the injection site (place an ice cube wrapped in a washcloth) for approximately 5 minutes before the injection as this will help with the pain of the needle going into the muscle...and I also suggested that he do his shot just before he goes to bed (hopefully he can sleep through the majority of its flulike side effects) and has the next couple of days to recuperate from its side effects. And I also reminded him that I was not a doctor, the above is only my opinion, with the exception of the proven Tysabri data that I mentioned (proven data is not my opinion, it is fact).

I was pretty tired Wednesday after my infusion so I ate a small dinner of pizza & pasta, accompanied by a mudslide or two, and then turned in.

I have a ton of new e-mails that I need to answer, and I hope to respond to some of your comments left recently on my blog... until then, have a wonderful weekend everyone.


Love, Lauren :)


  • At 3:22 PM, Blogger Vic said…

    I am glad that it went well, Lauren.

    The information that you provided in this post will prove invaluable to many people considering Tysabri.

    I hope that the a/c is keeping you cool.


  • At 2:41 PM, Anonymous Keli said…

    Hi Lauren. I had the same thoughts while watching fireworks. And thanks for your comments on my blog. I felt like I had helped her somewhat, so I hope she felt better. She was taking Copaxone. I told her about my success w/Tysabri and our doctor is a huuuuge advocate of Tysabri so I assume she'll be on it soon. I too will be getting my 24th injection next month. We're like junkies! : )

  • At 8:15 PM, Blogger ms'er faith said…

    This is very good information. My neurologist said "with my neurologist hat on, I would recommend you take Rebif. If I take that hat off, I would see why you would consider Tysabri."

    Of course, that was before I had a bunch of MRIs showing no new lesions since I was diagnosed with MS 18 years ago, and the lesions there are not active even though I have RR MS and use a wheelchair a lot, so I'd look great in any clinical trial.

    Neurologists seem a bit trapped right now, first by medication recommendations, then by med costs, and then by insurance companies' unwillingness to pay.

    Glad your infusion went well, and hope they continue to go well! I always look forward to your monthly postings!

  • At 1:11 PM, Blogger Denver Refashionista said…

    Good to find another "Living with MS." I just added you to my blog list. I am Living! with MS. I appreciate the good info on your blog.

  • At 9:52 AM, Blogger jen said…

    i agree with ms'er faith that neurologists seem to be in a weird place right now. my neuro also seems to recommend tysabri only as a last resort, but when i told him that i wanted the most effective treatment available and if in his expert opinion tysabri was the most effective, then i wanted tysabri. he put me on it.

    i think for the time being, people are going to have to be proactive if they want tysabri. neuros are still cautious about recommending it, but i think most of them are open to a discussion from patients who want to consider it.

    just because the doctor recommended avonex for the recently-diagnosed friend doesn't mean he wouldn't prescribe tysabri if the friend initiated the discussion.

  • At 10:07 PM, Blogger Blinders Off said…


    You are certified Tysabri veteran and I am happy that it is working for you. If Tysabri were around when I was first diagnosis with MS, it would have been my choice because I DID NOT want to inject myself with needles everyday or three times a week. That is why I started with Avonex, but the side effects were unbearable.

    I would be on Tysabri today had my immune system been stronger, but that is life. The suggestion you gave me about the auto injector has made a HUGE difference when I take my Copaxone injection. THANKS


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