Living With MS

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

Friday, May 29, 2009

My Tysabri Diary.....,

Hi everyone, I received the following message from a new MS friend I made yesterday, and I have her permission to post this on my blog:

"I want to thank you for your Tysabri Talk thread. I know you get accused of being a "Tysabri cheerleader," but why wouldn't you be? I hope it works for me, and I'll don the mini skirt and be right next to you, shaking those pom poms! Since my dx 7 years ago, I have been watching every single development in MS medications very carefully, and when Tysabri came out I was excited, but I knew I wasn't really a candidate yet for such a new medication. It's scary how quickly I DID become a candidate, though. And I have never seen anyone accused of being a Betaseron, Copaxone, Avonex, or Rebif "cheerleader," because let's face it... at best they're merely tolerable and might help slow progression down a little, and at worst they're fraught with miserable side effects, and don't slow down progression at all. So this enthusiasm for Tysabri I've witnessed (on multiple different MS message boards I frequent) is really genuine, fairly rare among available treatments, and growing at a significant rate.

I've consulted two neurologists, one my regular "everyday" neuro, and one an MS specialist, and both concur this is the best medication out there, and I need to be on it. They quote the PML "official" risks, but both sort of rolled their eyes, "You're not gonna get PML." They have many patients on it, and have seen great success, so I trust what they say. And after being in a relapse for 6 months, I just refuse to keep going like this. Quality of Life, dammit! So I don't care how many times the Angel of Death posts the newest PML case on the board (I think you know who I mean; her name escapes me), I really have no fear of it. Honestly, the last 6 months have been really tough; I don't want to live like this anymore. PML is really the least of my worries. I mostly fear it not working... that would be the true tragedy for me. But I am optimistic!"

Enjoy your upcoming weekend!


Love, Lauren :)

Monday, May 25, 2009

A big, BIG thank you for all the wonderful comments left on my blog..., honestly, some of you are so thoughtful and encouraging!

Because it is Memorial Day today, I won't be online much but nevertheless, I wanted to wish you all nothing but the very best and hope you are able to share your time and love today and always with friends and family while you still can.


Love, Lauren :)

Sunday, May 24, 2009

My Tysabri Diary...

Happy Memorial Day everyone! I completed my 34th Tysabri infusion on May 13, and all went well.

Here are a couple of interesting observations I've made over the last two weeks:

1. There are some MS patients are still afraid of Tysabri (see the message below that I received from a MS patient);

2. A startling report from the Institute For Safe Medication Practices dated May 7, 2009 and you will specifically note pages 9 (see the chart below for the interferons: Avonex, Betaseron, & Rebif were the leading medications which caused serious, disabling, or fatal adverse events) as well as pages 11, 12, & 13 which specifically states the following:

"The interferon beta case reports for all three drugs, however, did suggest a possible additional risk of cancer—an adverse effect for which warnings do not currently exist. The latest quarter of data included 131 possible cases of cancer, including reports of cancers of breast, lung, prostate, ovary, thyroid, esophagus, colon, rectum, kidneys, brain, liver, kidneys, bladder and skin. Since the drugs were first approved we noted 1,338 reported cases of possible malignancies."

Here is the chart that I was referring to on page 9:

Table 1. Serious, disabling and fatal events in 2008 Q3
Drug Name Cases Rank

DIGOXIN 1023- 2
INSULIN 399- 8
10 (a.k.a. Rituxan)
FENTANYL 369- 11
DIANEAL 335- 14
NATALIZUMAB 319- 15 (Natalizumab/Tysabri rated last on this list)

Here is the full report:

Here is the comment/message that I receive via a PM from a MS patient that is going to start Tysabri next week, and she was scared to death (I get these all the time, and after I explain the accurate facts of Tysabri do them, their responses are usually the same as this one below):

Thank you for your post on Tysibri. I am going for my first infusion next week and I am scared to death. I have been so worried about the scary side effects. PML in paticular. I have done a lot of research and your post and the comments after have helped me a great deal. Thank you again!!!!!!!!!!!!!!!!!!!!!!!

Here was my reply to her:

Hi there! (Sorry, I don't know your first name)...,

I think it's wonderful that you're about to start Tysabri (I just had my 34th infusion a couple of weeks ago)..., in my opinion (and I'm not a doctor) you really don't need to be scared of PML unless your immune system is severely suppressed. The expert authors of the New England Journal of Medicine indicate that PML is caused by a diminished immune system, not by Tysabri.

And if your neurologist pretreats you with a Benadryl drip for 30 minutes just prior to your Tysabri infusion, or if you take a Claritin-D tablet (like I do) approximately 1 hour before your infusion, this can drastically reduce the possibility of having any side effects.

It's always best to speak to your neurologist.

Relax, you're going to be on the most effective MS medication we have to fight our MS, woo hoo!

Good luck and please let me know how your first infusion goes next week, okey-dokey artichokey?

All my best you, Lauren

Here was her final reply to me:

Thank you Lauren! My name is XXX by the way! I will let you know for sure. You have eased my fears a lot!
Have a great Weekend!!!!!!

As to this latest case of PML that just surfaced, I do not know this patient's past medical history with regard to medications that she was on.

I wrote to Biogen requesting this information, but I do not know whether or not they will release this information to me. Once I find out, I will post the information on my blog.

My guess is she was probably already immune suppressed and this could be due to being on prior medications such as Azathioprine/Imuran, Methotrexate, Novantrone, or regular pulse steroid use, etc.

In light of the unbiased current serious, disabling, and fatal/adverse events report of the interferons indicated above, I still don't understand why MS patients are so afraid of Tysabri when it is the
most effective MS medication we have to fight our MS. Maybe someday they will, I just hope it's not too late for them.

Have a safe & happy holiday weekend!

((((hugs to all))))

Love, Lauren :)