My Tysabri Diary...Yesterday September 26, 2007 I listened to the national teleconference presented by MSActiveSource Re: Tysabri and the speaker was Dr. Heidi Crayton...here are a few of the notes that I took and if they happen to replay the telecast, I'll post the link for it. When I listened to the conference yesterday, I called 1-866-955-9999 to register for it and then I was given number 1-800-399-5094 and the code 13218633 to listen to it, so I am not sure if it is still available, but here are my notes: (remember these are her opinions, not mine):

She indicated that there are over 16,000 patients worldwide currently on Tysabri therapy, with more doctors and more patients feeling comfortable using Tysabri. More and more patients are asking to be placed on Tysabri therapy, especially because the infusion starts to work within weeks, as opposed to the ABCRs which can take up to months for them to start working. She said that most of these Tysabri patients start to feel better after their Tysabri infusions, i.e. she attributed this to the patients feeling they had a better Quality of Life.

She said she has had many success stories using Tysabri, and usually patients feel its effectiveness after the second infusion or approximately 6 weeks from the first infusion. She does not normally pretreat, but if she does, she use an antihistamine such as Claritin because Claritin does not make the patient drowsy.

She indicated that the patient's MRI results are good also, specifically in relapsing remitting and secondary progressive MS. Tysabri shows 67% efficacy (two thirds) over the ABCRs which only show a one third efficacy. Avonex at Rebif are the only injectables which show a reduction in relapses.

Regarding the patient's MRIs, Tysabri shows 76% reduction in black holes, which the ABCRs cannot address.

When discussing PML, she indicated that it was caused by Avonex plus Tysabri, and not Tysabri alone (she was adamant about this). She disagreed with the risk of 0.1% and stated it was actually much lower than that (she believed) when used as a monotherapy.

She went on to discuss the Touch program, indicating that patients are watched very closely and their health is monitored once a month because of the Touch program. All patients receiving Tysabri are watched better than patients that inject any of the ABCRs, so in actuality, the patient receives excellent care when it comes to their therapy.

She indicated that Tysabri was for relapsing forms of MS, which include relapsing remitting, progressive relapsing, and secondary progressive with relapses, which can be used as either a first line or second line therapy.

She discussed the fact that all of the treatments for MS have risks, including liver damage and depression from the interferons.

When discussing the options of Novantrone versus Tysabri, she indicated that she was very happy to have the option of using Tysabri over Novantrone, especially in younger patients because Novantrone causes infertility. She also indicated that Novantrone has risks of its own including cardio risks, permanent heart damage (to the heart muscle), leukemia, etc.

She also discussed Tysabri's mechanism of action against MS, but my numb hands were too tired to try to write anymore (besides, I could hardly read what I wrote to begin with- LOL!).

All in all, this was an excellent, informative program and I hope that many MS patients were able to listen to it.

Wooooohoooooo, it's about time!

Take care everyone...,

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org