Living With MS

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

Friday, January 25, 2008

My Tysabri Diary...

I just had an interesting telephone conversation with a Team Leader of Biogen/MSActiveSource with regard to Tysabri infusions being scheduled prior to the 28 day interval (every four weeks-the 'recommended' dosage time between infusions per the Tysabri label, see page 3 under Full Prescribing Information and he told me [paraphrasing] that if the prescribing physician recommends a prescribing interval of 21 days (every three weeks) for the MS patient, this is not a violation of the Touch program, and only needs to be cleared with the 'payor' a.k.a. the insurance company (this might be a big obstacle to overcome).

You can bet your bottom dollar I am going to be contacting my neurologist first thing Monday morning to discuss this with her as usually going into the third week after my infusion, I can feel that Tysabri's benefits have worn off. You can disagree with me all you want, but unless you feel the same way I do, you cannot understand.

If there are other MS patients that are on Tysabri therapy, and they are in the same boat as me (Tysabri wearing off after three weeks), I would strongly suggest that you contact your neurologist and advised them of the above. I am not sure how Kaiser Permanente will react to this news, or how other payors will react, but I'm definitely going to call my neurologist first thing Monday morning and discuss this with her.

I also mentioned in my conversation with him how very disappointing it is to see that Biogen is not even promoting Tysabri's superior efficacy (67%) over Avonex (32%); that MS patients are being kept in the dark regarding the above; Biogen doesn't even have a Tysabri patient story on their website for other MS patients to see; not even anything about Tysabri never having been linked to PML when used as a monotherapy in a MS patient with a strong immune system.

Nothing at all regarding these issues on the Biogen website. All Biogen is doing is promoting an inferior MS medication (Avonex), and promoting Rituxin which has been linked to 24 cases of PML, including two deaths. It's rather disgusting if you ask me.

Good luck to all MS patients!

Love, Lauren :)

Wednesday, January 23, 2008

My Tysabri Diary...

I had my 17th Tysabri infusion today, and it went smooth as silk. No problems, no allergic reactions, basically boring (I'm enjoying being bored regarding my infusions-gives me a chance to get all caught up on my court shows like Judge Mathis, Judge Joe Brown, Judge Christina, Judge Millian, etc., heehee). The other lady that I met last month had to reschedule her Tysabri infusion because she was sick. No one else was having Tysabri today, just me. The other two patients that were there were having chemotherapy.

The infusion center was pretty quiet today because it was pouring rain outside. Same thing happened last month, just a lot of rescheduling (although last month it was pretty busy and jammed packed because it was the day after Christmas).

I did learn that two additional Tysabri patients will be going to my infusion center (these are in addition to the other two patients that were added last month), so Tysabri use is picking up.

I'm going to go check my e-mails, and then I am headed off for pizza and mudslides for dinner (Yum!), and then I'm hitting the hay early because I'm pretty tired right now. I'm sure looking forward to tomorrow!

Have a great evening everyone, all my best-

Love, Lauren :)

Sunday, January 20, 2008

My Tysabri Diary...

A young MS patient that I have been communicating with (Lauren Parrott-she has been keeping a UTube video diary of her Tysabri experiences), posted a video last night regarding some answers that I gave her (my opinions) to some of the questions that she was asking me. What a total surprise! I can tell that she is feeling pretty good about doing that video as she is helping other MS patients have a little bit better understanding of Tysabri. Comments left have encouraged her tremendously.

She sent me the link for the video, and after viewing it, I wrote back to her telling her what a fantastic job she did.

I did point out one teeny-weeny itsy-bitsy omission that she made, which was corrected by her in a short subsequent video.

When I wrote her, I had indicated the following: "You stated in your video that Tysabri does not cause problems with your organs. I believe I wrote to you that"...Tysabri does not cause problems with organs like steroids do" (kind of a big difference between the two), and I gave you the Tysabri label as a reference (specifically, page 13 that states 'abnormal liver function tests') - which were pretty much equivalent to the placebo percentage, so no real difference there (again, only my opinion). I just don't want anyone thinking that there is no risk whatsoever, because there is always a risk with any drug that a problem could develop in a patient, even when using aspirin. You might want consider correcting that in your next video so as not to mislead other MS patients. (I think I worry too much - laughing at myself)".

I had also mentioned to her that Tysabri was approved by the FDA on January 14, 2008 for moderate to severe Crohn's disease, and she mentioned that in her short subsequent video.

She is such a sweet and delightful young lady with an extremely positive attitude, which will take her far beyond anything that she could ever imagine. I wish her nothing but the best.

If you haven't seen the video yet, she sent me a link for it (you might even leave her an encouraging comment too because she's trying to educate and help other patients [with a little bit of my help and knowledge] by providing them with accurate Tysabri information like I am):

She also mentioned to me that she received a message from a lady that had MS and was going to start Tysabri therapy as soon as possible, and the young lady had a son that had Crohn's disease so she is going to talk to her son's gastroenterologist about Tysabri. How cool is that ?!?!

All my best,

Love, Lauren :)

Friday, January 04, 2008

My Tysabri Diary...,

This e-mail is from my friend Lynn, who is having her 60th Tysabri infusion on the 15th (Yep, you read that right, 60th Tysabri infusion)...I have her permission to post this, and the link within her e-mail from the Mountain Region Advocate Regional Trainer (She Without Arm, He Without Leg) will blow your mind. Anyone that puts limits on themselves should see this video. If you would like to read about these two dancers, scroll down a bit on the page, and their entire story is there.

By not limiting oneself as to what you can accomplish, you will be able to see yourself in a brand-new light, even though you saw yourself "crippled" at one time....You define your dreams, so be brave and dream them.

No limits limits = strength, confidence, beauty, stamina, and hope. Just trying to accomplish a task, is an accomplishment in itself, and if you don't try, you will never know what unbelievable strides and beautiful changes you can make in your life.

What a way to start the new year off! Enjoy, Lauren :)

Subj: Happy New Year!
Date: 1/2/2008 4:32:40 PM Pacific Standard Time
Sent from the Internet (Details)
Dear Lauren,

Thank you so much for your words of encouragement you give to each of us. I love reading your diary and hearing how things are going for you. I had difficulty posting a reply to your latest update so I am just sending you an email. I absolutely loved the song that you referenced by Celine. I love her music. Yes, another year has gone by, but we are still enjoying Tysabri! I go in for my 60th infusion on the 15th. And yes, I can still say that I have not had a single relapse since I began in 04/02 even despite the ups and downs of all those days. I shared with you before about all the many stressful times I had experienced, but I can now add that I have ridden on the back of a Harley Davidson motorcycle for over 200 miles too! And my precious granddaughter will be 9 months old on the 24th.

I loved the recipes you talked about for your Christmas dinner. I would love to get them sometime. And I am so happy that you got a new kitty. I loved the pictures you posted with the words of encouragement that you gave us for this New Year. I can't wait until I read about the one small step that Lauren took, a giant step for the MS community. You are going to walk some day, girl! I just know it. Attitude is such a big part of that and you are always so positive. Life is going to be great in 2008!

Thank you again for all you do and for the wonderful messages that you share with everyone. We are so blessed. I was also blessed by the inspirational ballet that was forwarded to me by the Mountain Region Advocate Regional Trainer. This is awesome. It is found at,htm.

Have a wonderful new year! I love you, Lauren.