Living With MS

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

Thursday, September 27, 2007

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 :D
A very proud member of www.MSpatientsforchoice.org

11 Comments:

  • At 1:18 PM, Anonymous Anonymous said…

    Thank you for your time in writing this. I will be start Tysabri next month and am scared. All the information I can get eases my mind.

     
  • At 2:28 PM, Blogger Troy said…

    Lauren,
    Thanks for you comment on my blog. My infusion went very well yesterday. I have been a subscriber to your blog for some time. I've even told my wife about you as an "outstanding advocate" for Tysabri. Thanks for writing, you helped me decide to go ahead with my switch to Tysabri.

     
  • At 3:28 PM, Blogger Lauren said…

    Awww anonymous, there is no need for you to be scared, honest.

    If you are scared of developing PML, consider this: there are over 16,000 patients currently on Tysabri, and guess how many have developed PML? The answer is ZERO! So that leaves us with a current risk factor of zero in 16,000 plus or 0:16,000 plus :)

    The three trial patients that developed PML all had severely compromised immune systems due to drug interactions with both Avonex and Azathioprine, and here's another startling fact: neither one of them had MS!

    If you are truly still scared dearheart, please feel free to write me at LGLBGL2003@AOL.com and I will try my best to calm your fears..okey-dokey artichokey?

    Lauren ;)

     
  • At 3:33 PM, Blogger Lauren said…

    Wow Troy, I'm honored that I can help you in some way regarding your decision to switch to Tysabri.

    And I'm so very happy for you that your infusion went very well... please keep me posted on your progress okay?

    ((((((( many supportive hugs ))))))) for each person with MS reading my blog.

    Lauren :D

     
  • At 10:07 AM, Blogger Cyndee said…

    Thanks Lauren for the information on the conference.
    I will try and find the time to try and listen to it.
    I had my Tysabri infusion yesterday and I'm feeling SO GOOD today!!! Yeah!!

     
  • At 8:01 PM, Blogger Patti said…

    Thank you for your blog, I will be taking my 12th t infusion on October 4th, I was on T before it was recalled, I have noticed some marked changes all for the good I only wish there were some side effects like thicker fuller longer hair, decrease of face wrinkles or cellulite.

    I would like to pass on your blog site to the internet group I belong too.

    Thank you again
    Patti

     
  • At 8:08 PM, Blogger Lauren said…

    Yaaaay Cyndee! You go girl...

    Talk to you soon. Lauren :)

     
  • At 8:18 PM, Blogger Lauren said…

    Hi Patti! I was on Tysabri too before the recall...

    "I only wish there were some side effects like thicker fuller longer hair, decrease of face wrinkles or cellulite"

    Oh My Goodness Patti!!! Too funny! LMAOoooooooooooooooooooooooooooo!

    We can generally dream of those kind of side effects, huh? ;)

    "I would like to pass on your blog site to the internet group I belong too"... sure! The more who learn the truth about Tysabri, the better, in my humble opinion.

    Take care Patti, and I'm so happy Tysabri is working for you, and I'm honored that you shared your wonderful sense of humor with me.

    Lauren :)

     
  • At 12:34 AM, Blogger Blinders Off said…

    Sometimes I regret my decision of letting my fear of PML change my mind about Tysabri.

    Going back to my daily injections is painful and just the thought of having a once a month infusion is looking better.

    Maybe I will get the courage to try Tysabri, I know I will once my MRI show changes.

     
  • At 10:22 AM, Blogger Lauren said…

    Awwwwwww Dee,

    I completely understand, and I don't blame you. I only wish the very best for you, and I pray that Copaxone works for you.

    By the way, Biogen/Elan this morning released a PR statement, indicating that there are approximately 17,000 patients currently on Tysabri therapy with no cases of PML since its relaunch in 2006. There are also new studies which have just been released also indicating that plasmapheris exchange significantly and effectively removes Tysabri from the body in a very short period of time should PML ever be suspected in a patient, which will add an additional safety element for Tysabri use.

    All my best to you D, take care now.

    Lauren :)

     
  • At 8:50 PM, Anonymous Anonymous said…

    Hello Lauren

    I have been on Tysabri for 15 months I posted a comment just before my 12th infusion.

    I have a question, perhaps you or someone else out there might have an answer.

    My employer has changed insurance we now have a insurance supplement policy not a regular poslicy anymore and the new company will only pay upt $1520.00 Per year for this type of care, I have contacted Biogen and they are looking into helping with the cost of the drug, but my problem is also the actual hospital expense of the infusion, since I'm a middle income single working girl, my options it appears is limited.

    I was just wondering if you had heard of anyone else needing assistance.

    Thank you
    Patti

    PS I'm still waiting on those Good Side Effects

     

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