Living With MS

2012-01-23T09:18:00.000-08:00

Hi everybody, I completed my 69th Tysabri infusion on Tuesday, and everything went fine. I did receive some sad news from one of my friends that receives her arthritis medication at the same time I receive my Tysabri infusion - her older sister passed away after suffering from complications due to having Parkinson's disease and being bedridden for over a year. She is such a sweet woman and I felt so bad for her, but she has now come to grips with it and indicated that her sister is no longer suffering and is now in a better place.

Well I'm off to have an early lunch, so take care everyone...,

Love, Lauren :)

2011-12-24T11:34:00.000-08:00

My Tysabri Diary...

Hi everybody, I completed my 68th Tysabri infusion, and all went well. I referred a new Tysabri patient to my infusion center, and they infused her two weeks ago, woohoo!

At this time, I would like to wish everybody a very joyous Merry Christmas and a Happy New Year too..., also, here is a link to a beautiful song entitled "Mary Did You Know"

http://www.youtube.com/watch?v=AQM2rszMAfY&feature=related

I truly hope you enjoy this song and you enjoy your holidays, including Hanukkah.

((((hugs))))

Love, Lauren :)

2011-11-23T10:48:00.000-08:00

My Tysabri Diary...

Happy Thanksgiving everybody! I completed my 67th Tysabri infusion yesterday, and everything went fine.

At this time, I would like to wish everybody a joyous Thanksgiving, with good food, spending quality time with your loved ones, family and friends.

In addition, I would like to share the following E-card from Jacquelin Lawson...,

http://www.jacquielawson.com/preview.asp?cont=1&hdn=0&pv=3111921&path=98301

Enjoy your holiday!

((((hugs))))

Love, Lauren :)

2011-10-28T10:46:00.000-07:00

My Tysabri Diary...,

Hi everyone, I completed my 66th Tysabri infusion on Tuesday, and everything went fine. I did find out that a woman who has had MS about as long as I have, has been on Tysabri since 2008, had an infusion last month and miraculously her optic neuritis clear up completely..., amazing huh? :)

Well I'm off to have brunch now, so take care everyone and have a wonderful weekend!

((((hugs))))

Love, Lauren :)

2011-09-29T09:40:00.000-07:00

My Tysabri Diary...,

Hi everyone, I completed my 65th Tysabri infusion on Tuesday, and everything went well.

My regular infusion nurse who had been out on sick leave was back, and she got me on the first stick, yaaay!

I'm still a little tired from my infusion, so I'll make this post short..., have a great weekend everyone...,

((((hugs))))

Love, Lauren :)

2011-09-03T10:09:00.000-07:00

My Tysabri Diary...

Hi everyone, I received my 64th Tysabri infusion on Tuesday and all went well, with the exception of my regular infusion nurse being out on sick leave, and with a new infusion nurse (who usually works in the chemo department of Kaiser), and even though she is certified to infuse Tysabri, I basically had to educate her about Tysabri (sheesh).

There is a really nice lady that comes in for an infusion of her rheumatoid arthritis medication on the same day I receive my Tysabri, and we always visit. She is the caregiver of her sister who is in a really bad situation, and I found out on Tuesday that hospice has been called in and she has only being given a couple of months to live (it's so sad). I told the lady that I would keep her and her sister in my prayers.

I had a recent MRI of the brain, and my doctor advises me that I have no new active lesions, woo hoo!

Have a very happy upcoming Labor Day holiday...

Anyway, I'm going to have an early lunch today and then take a power nap (heehee).

Take care everyone...,

((((hugs))))

Love, Lauren :)

2011-08-04T09:42:00.000-07:00

My Tysabri Diary...

Hi everyone, I received my 63rd Tysabri infusion on Tuesday. Everything went fine. I saw my doctor yesterday, and he is still pleased with my results. He ordered blood tests and a new MRI of my brain. I'm still a little tired from my infusion so I'll make this post short and sweet.

Have a great weekend everyone!

((((hugs))))

Love, Lauren :)

2011-07-06T09:39:00.000-07:00

My Tysabri Diary...

Hi everyone, I completed my 62nd Tysabri infusion yesterday, and all went well.

The dark mole on my leg continues to heal, and I'm still a little tired from my infusion yesterday, plus it's going to be well over 100° today, so I'll make this a short post.

Take care everyone and enjoy the rest of your week.

((((hugs))))

Love, Lauren :)

2011-06-08T09:40:00.000-07:00

My Tysabri Diary...

Hi everyone, I had my 61st Tysabri infusion yesterday, Tuesday, 6/7 and everything went fine, but the most amazing thing has happened..., I had a mole on my leg a little bit bigger than the size of a pea and it was dark, however now, it has almost disappeared, shrinking in size down to the size of an eraser on a small pencil, and it is now pink!

I am so shocked and amazed at this new development, and pleasantly pleased at the same time. I'm still a little tired after my infusion so I'm taking it easy for a couple of days.

Take care everyone...,

((((hugs))))

Love, Lauren :)

2011-05-11T11:54:00.000-07:00

My Tysabri Diary...

I completed my 60th Tysabri infusion yesterday, and all went well..., 60th - wow! I'm feeling pretty good right now, just a little tired, which is common for me.

I'm off to have an early lunch, so take care everyone and enjoy the rest of your week!

((((hugs))))

Love, Lauren :)

2011-04-15T11:16:00.000-07:00

My Tysabri Diary...

Hi everyone, happy upcoming Easter..., I completed my 59th Tysabri infusion on Tuesday, 4/15. My regular nurse was out, and I had a different nurse who only stuck me twice. After the line was in, everything went smoothly as usual. I did find out that there is another Tysabri patient that has been added to the total of patients receiving Tysabri at my small infusion center, 14 now - I believe?

Anyway, I'm off to have an early lunch, take care everyone!

((((hugs)))) Love, Lauren :)

2011-03-18T12:51:00.000-07:00

My Tysabri Diary...

Hi everyone, I had my 58th Tysabri infusion on Tuesday, 3/15. As usual, everything went fine. My infusion nurse was rather busy, so I did not get to visit with her.

I'm still feeling a little tired, so I'm off to have a late lunch - have a great weekend everyone!

((((hugs)))) Lauren :)

2011-02-18T11:10:00.000-08:00

My Tysabri Diary...,

I had my 57th Tysabri infusion on Tuesday, 2/15..., all went well as usual. Nothing new to report.

I'm still a little tired as I wait for my burst of energy to kick in.

Take care everyone, Lauren :)

2011-01-21T12:55:00.000-08:00

My Tysabri Diary...

I completed my 56th Tysabri infusion on Tuesday, 1/18, and all went well as usual. My small infusion center now has 13 Tysabri patients, and I got to visit with one of them on Tuesday (she was quite the chatterbox -heehee). I knew her neurologist and she mentioned that she has been on Tysabri for two years and her neurologist mentioned to her that there is an increased risk of developing PML after the two-year mark. I told her if she hasn't been tested for carrying the JC virus, choosing to go off of Tysabri was premature in my opinion. I explained to her that if she does not carry the dormant JC virus, she cannot develop PML because the activated and untreated JC virus is what causes PML. She said "oh I'm so glad you explained that to me!" She also mentioned that her doctor did not feel she needed to go off of Tysabri therapy, she just felt she had the obligation to mention this to her and discuss it with the patient if she so desired.

She then asked me if I knew how Tysabri worked, and I said "yes, as a matter of fact I do know how Tysabri works" (heehee) and I explained that to her as well - I also mentioned that I had the opportunity to meet the brilliant Dr. Ted Yednock (the doctor who discovered Tysabri.

She is one of the lucky MS patients because Tysabri is working wonders for her (she has had MS for 10 years, but most of her prior damage from relapses had not become permanent yet). She was once in a wheelchair, but after 8 infusions of Tysabri and a lot of physical therapy, she no longer uses it, and she only uses a cane when she has to walk really long distances. She still has numb feet, but the neural connection from her brain to her legs has been restored, she just has to be careful when walking because of her numb feet. Pretty miraculous, huh? She told me that she has seen slow improvements in her optic neuritis and cognitive function. Almost back to 75% or so, but she's happy with the improvement she's showing (she was previously on Avonex, Betaseron, Rebif, and Copaxone - none of which really helped or stop/slow the disease process down).

Before I knew it, my time was up and I had to get going, but I'll see her again next month. I'm still a little tired, so I am going to sign off now..., have a great weekend everyone!

((((hugs)))) Love, Lauren :)

2010-12-24T14:47:00.000-08:00

55th Tysabri infusion report and a Christmas message from me...,

Hi everyone, I completed my 55th Tysabri infusion on Tuesday, all went well as usual and the infusion center where I go was rather busy..., what was interesting is that two new Tysabri patients were there when I was. Unfortunately, the one sitting closest to me was in a very bad mood (I got the feeling that she was being rather negative about her MS) and the other Tysabri patient was too far away for me to visit with her. The one patient in a bad mood had a very aggressive form of MS, and she was diagnosed only six years ago with the inability to walk and her tremors were rather severe.

When I told her that she might see some improvements in her symptoms between the fourth and sixth infusion, she seemed to have a little bit of hope, but I also believe that she was expecting to see miracles right away. When she asked me how long I have had MS and how many Tysabri infusions I had received, I told her I have had MS for almost 36 years (it will be 36 years on January 1), and that I have had 55 infusions so far and my MS has remained stable for more than four years, with no new relapses during that time. I also explained her that because I've had MS for so long, my damage was probably permanent, but she can always hold onto hope for improvements because she was still in the early stages of her disease. After that, I basically left her alone so she could think about what I had told her, and because she really did not feel like chatting. I tried to keep the conversation upbeat and short..., This disease can be so devastating emotionally for some patients that have a severe form of it and it makes me very grateful for what I do have and have had for so many years.

On a lighter note, I want to wish everyone a very Merry Christmas and a happy New Year -- may each of you hold your loved ones dear. Below is a link to a video by Rascal Flatts entitled "I'll be home for Christmas" which I am dedicating to all of our overseas servicemen and women..., as I am sure that they wish they were home with their families this upcoming holiday (I also hope you enjoy Rascal Flatts amazing harmonies).

Merry Christmas to all and to all a healthy and prosperous New Year!

Lauren

http://www.youtube.com/watch?v=iW8wMMIVBFM

2010-12-04T09:04:00.000-08:00

HUGE breaking news as it relates to Tysabri!

Hi everyone, I just saw this on a MS message board as it relates to Tysabri treatment/JC virus/development of PML:

"There's potential new treatment for PML that I haven't seen posted on the form yet that's good news for Tysabri users, in the patient treated with this new treatment that developed PML it “The combination therapy succeeded in eradicating the polyomavirus JC, the virus that causes PML, in less than two weeks following initiation of CYT107 treatment, and four weeks following the introduction of CMX001”. XXX/Jim

http://www.businesswire.com/news/home/20101130005169/en/Cytheris-Announces-Publication-Clinical-Case-Study-Combining

I then posted the following reply:

"Thank you Jim for posting that information, this could most definitely help MS patients that might develop PML from the JC virus being activated, and I also wonder if the treatment (which is an antiviral treatment) could be used to eradicate the JC virus altogether if a person tests positive for carrying the dormant JC virus by having antibodies to the virus show up (in other words, before it could even develop into PML). If so, this would put at ease the fears of any patient on Tysabri that tests positive for carrying a dormant form of the JC virus in their system. I can hardly wait for more data to be released regarding that matter."

Why hasn't Biogen posted anything about this before? Considering they already have a very sensitive test which can determine if a patient carries the JC virus (because it tests for JC virus antibodies), combined with the effective antiviral treatment mentioned above, can you imagine how many MS patients would no longer be afraid of using/starting Tysabri, would not longer be afraid of developing PML if they tested positive for carrying JC virus antibodies, and would not have to even consider stopping Tysabri up to the two-year mark, etc.? I'd be shouting this information from the rooftops!

Jmho..., Lauren

2010-11-24T14:57:00.000-08:00

54th Tysabri infusion report...,

Hi everyone, I completed my 54th Tysabri infusion on Tuesday 11/23, and I have been on this medication for more than four years, remaining relapse free all the time, with Tysabri slowing my disease process down, for I surely would be bedridden by now without Tysabri - and for this, I am extremely thankful, especially at this time of year.

Here is an interesting Tysabri information chart/statistics from patients on a very popular MS website (note the Adherence information below):

***

What is Natalizumab?

Natalizumab is a monoclonal antibody given by infusion and used in the treatment of MS and Crohn's disease. It has been shown to slow progression and reduce relapses in MS. It is currently sold under the brand name Tysabri.

Reasons taken & Efficacy

Reasons and Efficacy
Reasons taken	Efficacy # of patients Efficacy	# of patients evaluated by
Multiple Sclerosis MS	1043	373
Other	33	10
Fatigue	23	12
General health	22	5
Improve mobility	21	11
Stiffness/Spasticity	19	8
Neuralgia (sensation)	9	4
Weakness in legs	9	5
Vision	4	2
Don't know	4	1
Imbalance when walking	2	2
disease-related symptoms	2	0
Loss of energy (asthenia)	2	1
don"t care about anything	1	1
iv, every 4 weeks	1	0
changing from avonex	1	0
Multiple Sclerosis	1	0
Multiple System Atrophy MSA	1	0
Halt Progression, Allow Body to Recover	1	1
Transfering	1	1
Copaxone stopped working	1	0
Pain	1	0
Cognitive decline	1	0
Recover some of functional loss	1	0
other tx weren't working	1	0
Numbness in legs	1	1
crab drugs were not working	1	0
Cognitive Confusion	1	1
Other therapies were not slowing progression or decreasing relapses	1	1
Visual aura	1	1
Crohn's Disease	1	1
Unsteady gait	1	0
AVONEX WASN'T WORKING ANYMORE.	1	0
Improve communication	1	0
bring back mental focus	1	0
alleviate and ameliorate symptoms and decrease potential for more plaques.	1	1
this DMD better tolerated, BetaSeron and Avonex intolerable	1	1
Walking problems	1	2
Walking was getting worse	1	1
To prevent further relapses and slow the disease process down	1	1
Prevent Relapes	1	1
Slow MS progression and make exhasurbations less problematic.	1	0

See all 42 reasons taken ▼

See all 1148 patients currently taking Natalizumab

Mouse over the table for more information

Side Effects

Side effects as an overall problem

Severe	26
Moderate	44
Mild	123
None	212

Most commonly reported side effects

Headaches	54	35 26 4
Tiredness	53	25 26 13
Fear of PML	25	13 12 5
Stomach pain	14	8 4 1
Head pain	14	4 6 3
Urinary Tract Infection UTI	14	9 7 1
Mood changes	12	9 4 2
Allergic reaction	10	1 3 7
Nausea	10	4 6 3
Itchy rash	9	5 3 1
Fatigue	8	2 6 3
Back pain	6	2 3 3
Weakness in legs	5	2 3 2
Weakness (general)	4	0 0 4
Joint pain	4	2 3 0
Hair loss (alopecia)	3	1 3 0
Bladder problems	3	1 3 0
Infection	3	1 3 0
Migraine headaches	2	2 0 2
Brain fog	2	1 1 1
Difficulty thinking	2	2 0 2
Elevated liver enzymes	2	0 1 1
Flu like symptoms	2	0 2 1
Metallic taste in mouth	2	1 1 1
Body Aches	2	1 1 0
Lethargy	2	0 0 2
Migraine	2	0 1 1
Insomnia	2	0 1 2
Chills/fever	2	0 2 0
Anxious Mood	2	2 1 0
Lose train of thought	2	1 1 2
Dizziness	2	1 2 0
Blurry vision	2	1 2 0
Loss of sex drive (libido)	1	0 1 1
Drowsiness	1	1 1 0
Joint soreness	1	1 0 0
Weakness in hip	1	0 1 1
Herpes outbreak	1	0 0 1
Easily get sick	1	0 1 0
Developed Antibodies	1	1 1 0
Yeast Infection (Candida albicans)	1	0 0 1
Diarrhea	1	1 1 1
Swollen tonsils	1	1 1 0
Shooting pain in head	1	1 0 0
Sinus infection	1	0 0 1
Thrush	1	1 0 0
Rash or skin problems	1	0 1 0
Nose infection	1	0 1 0
Myoclonus	1	0 1 0
Confusion	1	0 0 1
Numbness in legs	1	1 1 0
Hives	1	0 0 0
Pain in legs	1	0 0 1
gums desolving	1	1 0 0
Dry mouth (xerostomia)	1	1 0 0
feel more disabled	1	1 0 1
Pins and needles in hands	1	1 1 0
Immune system weakened	1	0 1 1
Pins and needles in feet	1	0 1 0
procressing of ms	1	0 0 1
Mouth sores (ulcers)	1	1 0 0
Cough	1	1 1 0
Abdominal cramps	1	1 1 0
Relapse MS (exacerbation)	1	1 0 1
Weight loss	1	0 1 1
Rash on legs	1	1 0 0
Cramps in calf muscles	1	0 1 1
Sleepiness	1	0 1 0
Tired and weak next day	1	1 1 0
a certain freshness	1	1 1 0
Hair whiting	1	0 1 0
Bruise easily	1	1 1 0
Tired after dose through next day	1	1 0 0
pustules/ lesions on legs	1	0 0 1
Pain in veins during infusion	1	0 0 1
Unexplained itching	1	0 1 1
Hypersensitivity reaction	1	0 1 0
Itching (pruritus)	1	1 0 1
lymphocytosis	1	1 1 0
Pressure headaches	1	0 1 0
chest/respiratory symtoms	1	1 1 0
Throat infection	1	1 0 0
Paranoia	1	1 0 0
Difficulty sleeping through night	1	0 1 1
Acute bronchitis	1	0 1 0
Arthritis	1	0 0 1
Vision problems due to fatigue heat and stress	1	0 0 1
Near blackouts	1	0 0 1
Bad taste in mouth	1	0 1 0
Nausea and vomiting	1	1 0 1
Emotional lability	1	1 1 0
Urticaria (hives)	1	1 1 0
Cold sores (fever blisters)	1	1 0 1
infusio sensitivity	1	0 0 1
Dizziness with nausea	1	1 1 0
Bronchitis	1	0 0 1
Stomach upset	1	1 0 0
Depression with suicidal thoughts	1	1 1 0
increased occurance of relapses	1	1 0 0
Cold hands and feet	1	0 1 1
"Out of Sorts" for approx. 1 day	1	1 0 0
Pain in right eye	1	1 0 1
Mental fatigue or exhaustion	1	1 0 1
Jaundice	1	1 1 0
Sinus problems	1	1 1 0
Abdominal pain	1	1 0 0
Fatigue post infusion for day and a half	1	0 1 0
Addiction	1	0 0 1
Bullous pemphigoid	1	0 1 0
Pain	1	1 0 1
Racing heart (tachycardia)	1	1 1 0
Depressed Mood	1	1 1 0
muscle deterioration	1	0 0 1
Better balance	1	0 1 0
Clear vision	1	0 1 0
Vivid dreams in first week	1	1 0 0
face breaking out mildly	1	1 0 0
Rashes (redness, swelling)	1	1 1 0
Muscle fatigue	1	1 1 0
Excessive daytime sleepiness (somnolence)	1	0 0 1
Loss of short term memory	1	0 0 1
Drugged feeling	1	1 0 1
Euphoria	1	0 0 1
Bladder infection (Cystitis)	1	1 0 0
Generalized muscle aches	1	1 1 0
Heartburn (reflux)	1	0 1 0
Possible upper respiratory infection	1	0 1 0
Cellulitis	1	1 0 0
Cold chills	1	0 0 0
Chest tightness	1	1 0 0
Mild & managable vaginitis sometimes for 5 or 6 days after infusion	1	1 0 0
Joint pain in elbows and knees	1	0 0 1
Sherman	1	1 1 0
Problems concentrating	1	1 0 1
Dizziness and feeling faint	1	1 1 0
Cognitive impairment	1	1 1 0
Progressive Leukocytosis	1	1 1 0
Weakness in left leg	1	0 1 1
Balance worsened	1	0 0 1
Painful lymph nodes (glands)	1	1 1 0
Dry eyes	1	1 0 0
Chronic Fatigue Syndrome	1	0 1 1
Chills	1	1 1 0
Several acute dizzy spells	1	0 1 0
Bruising	1	0 1 0
Sweating excessive	1	0 0 1
Increased energy	1	0 1 0
Breast Cancer recurrence on Tysabri	1	0 1 0
Acid reflux (GER gastroesophageal reflux)	1	1 1 0
Mood swings	1	1 1 0
Flushed	1	1 0 0
I was tired after in infusion but fine the next day	1	1 0 0
Difficulty walking	1	1 1 0

Mild
Moderate
Severe

See all 153 reported side effects ▼

Dosages

Top 10 dosages based on patients currently taking Natalizumab. See all 24 dosages ►

300mg/15mL as needed	monthly	1 monthly	200 mg monthly	300 mg/15 mL monthly	300 mg monthly	300 mg/15 mL every 4 weeks	300 mg every 4 weeks	2 x 300 mg/15 mL every 4 weeks	300 mg/15 mL every other day	300 mg/15 mL daily
8	142	1	2	4	2	1	1	2	1	1	2	1	4	1	371	40	537	2	1	1	1	3	13

Stop Reasons

Why Patients Stopped Taking Natalizumab (multiple reasons could be selected)
Reason	# Patients	Percentage of patients
Doctor's advice	88
Side effects too severe	84
Other	81
Did not seem to work	72
Personal research	20
Expense	19
Course of treatment ended	6
Change in health plan coverage	6
Not indicated	2

See all 259 patients who’ve stopped taking Natalizumab

Duration Hide details ▲

Currently Taking Natalizumab

A bar graph

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
4	18	43	90	111	187

Stopped Taking Natalizumab

A bar graph

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
28	38	40	55	59	29

Adherence, Burden & Cost Hide details ▲

Adherence

Taking treatment as prescribed

Adherence of Natalizumab

Always	383	95%
Usually	14	3%
Sometimes	3	1%
Never	5	1%

Burden

Difficulty being on treatment

Burden of Natalizumab

Very	19	5%
Somewhat	48	12%
A little	116	29%
Not at all	222	55%

Cost

Paid out of pocket

Cost of Natalizumab

$200+	69	24%
position: absolute;00-199	22	8%
$50-99	23	8%
$25-49	28	10%
< $25	136	48%

See more information, including instructions, precautions, side effects, and interactions.

Patient Evaluations

See all 405 patient evaluations

msladyinca
Sex: F
Sensation: Moderate
Overall: Mild
Cognition: none
Vision: none
Speech: none
Swallowing: none
Upper limb: moderate
Walking: severe
See profile
msladyinca
300 mg/15 mL every 4 weeks
since Sep 28, 2010
Efficacy Major for To prevent further relapses and slow the disease process down
Side Effects None
Advice/Tips I'm still relapse free as of October 16th, 2006. My MS is still stable and my infusion next month will mark my treatment time being as more than four years,... See full evaluation

syl
Sex: F
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: moderate
Speech: mild
Swallowing: mild
Upper limb: moderate
Walking: moderate
See profile
syl
300 mg/15 mL monthly
since Jun 02, 2010
Efficacy Major for Multiple Sclerosis MS
Side Effects Mild
Advice/Tips My dr and I recently made the decision to switch my infusions from every 28 days to every 6 wks. We based this decision on the number of infusions I had tak... See full evaluation

teejaygrl
Sex: F
Sensation: Moderate
Overall: Mild
Cognition: mild
Vision: mild
Speech: mild
Swallowing: mild
Upper limb: moderate
Walking: mild
See profile
teejaygrl
300 mg/15 mL monthly
since Jul 20, 2010
Efficacy Major for Multiple Sclerosis MS
Side Effects Mild
Advice/Tips THIS DRUG HAS HELPED ME GET MY LIFE BACK. I DON'T FEEL SO DOWN AND USELESS. SO MANY PEOPLE HAS SEEN SUCH A DIFFERENCE IN ME AND SO HAVE I. I REALLY DO FEEL A... See full evaluation

See all 405 patient evaluations

Report created on November 24, 2010.

I would like to take this opportunity to thank everyone for the happy birthday wishes sent to me on Sunday via PM and e-mail and want to wish everyone a very happy and safe holiday tomorrow..., enjoy your family, friends, and loved ones.

Lauren

2010-10-30T10:59:00.000-07:00

(Golden Retriever ghosts? heehee, typical goofy and sweet breed -
Have a great & safe Holloween everyone!)

My Tysabri Diary...,

I had my 53rd Tysabri infusion on Wednesday, 10/26, and all went well. My infusion center was extremely busy because the infusion nurses were being trained on a new computer program (apparently, the new program was to input all patients, their treatments, their doctors, their medications, etc., online).

I currently have a lot going on at home and I'm still a little tired from the infusion, so this post will be rather short.

I love the fact that I have increased strength, and I'm feeling pretty good right now, with the exception of experiencing a little fatigue from the infusion, which is normal for me.

I am receiving more and more e-mails from patients that are contemplating going on Tysabri, and there is one girl I've been communicating with that is excited to be starting Tysabri soon (she was rather scared about PML at first, but when I explained to her about the immune system, the JC virus, etc., recommending that she also speak with their neurologist, she calmed down). She is going to keep me updated as to her progress when she finally begins her treatment with Tysabri. Again, she is rather excited now :)

Have a wonderful weekend everyone!

((((hugs))))

Love, Lauren :)

2010-09-30T12:30:00.000-07:00

My Tysabri Diary...,

I completed my 52nd Tysabri infusion on Tuesday, 9/28. Everything went well with the exception of having to be stuck three times in order to get a good line going for my infusion, owie ... :/

I ran into the young girl (she's been on Tysabri for approximately 1 year) and her mother when I was having my infusion, and she told me that her tremors started to return around the third week of the month (in other words, she could tell she was definitely due for her next infusion). It only took approximately 45 minutes into her infusion to observe that her tremors had slowed down considerably. It is one thing to see this kind of drastic improvement happen right before your eyes, and another just to be told about seeing this improvement happen. I'm still smiling when I think about how wonderful it is for some patients to have this medication available when treating their MS.

I'm still relapse free as of October 16th, 2006. My MS is still stable and my infusion next month will mark my treatment time being as more than four years, yeah! I am very happy with this treatment, and my adherence to taking this medication once every 28 days is so very easy.

Well, I'm off to have a late lunch, and I'll probably take a nap afterwards. I send all my very best to everyone..., take care everyone, and enjoy your upcoming weekend.

((((hugs))))

Love, Lauren :)

2010-09-01T12:04:00.000-07:00

(me and my beautiful Teddy - '97 or '98)

My Tysabri Diary...

Hi everyone, I had my 51st Tysabri infusion yesterday, and all went well..., I must say that my infusion nurse at Kaiser Permanente is probably one of the best infusion nurses that they have. She is able to just stick me once, and boom, the infusion needle is in, and I'm on my way to receiving my infusion..., I just love that!

I saw that young girl there again at my infusion center, as well as her mom, and she is really doing well! She left shortly after my infusion began, and she walks and talks beautifully..., you really could not tell she had MS, woo hoo!

I am still a little tired today, so I think I'll go take a power nap now..., take care everyone!

((((hugs))))

Love, Lauren :)

2010-08-04T11:19:00.000-07:00

(this was me in the mid-80s)

My Tysabri Diary...

I had my 50th Tysabri infusion yesterday (50th? Yep, that's right-50)..., I'm still a little tired so I'll make this post short and sweet...,

I met two other current Tysabri patients at my infusion center yesterday, one was a young girl of 22 and doing great on Tysabri (she has been on it for a year now), all of her prior symptoms of numbness and tingling in her hands, in her feet, terrible balance, slight optic neuritis in her right eye, and a complete numb right side from her rib cage down, and severe cognitive problems have all cleared up 100% - with the exception of her cognitive problems, they've only cleared up about 75% at this time, but she notices every day she seems to get better and better, she was so happy to be on Tysabri!

The other lady that I met there was on her fourth Tysabri infusion (she is 100% wheelchair-bound at this time), and she was around 45 years old (I don't know how long she has had MS), but she also had terrible tremors all over her body when I first met her in the morning. I really didn't get to talk to her because I was busy being interrogated (LOL) by the young lady's mother that was there, and both of them were so excited about Tysabri.

But back to the other lady that met there, when her time was up (infusion and observation time), her husband came to pick her up and had her wheelchair ready for her, and she stood up unassisted for about 10 seconds before she sat down in her wheelchair and her body tremors has significantly subsided. She was so happy, she started to cry and everyone else there in the infusion center was crying and clapping at her small achievement! Man oh man, I just cannot put into words how wonderful it was to see her smiling, crying, laughing, and the look of hope on her face was absolutely indescribable, and before they said goodbye, she yelled out "I can hardly wait until I get my 5th infusion!!!" (LOL-I definitely knew that feeling! LOL).

Lastly, I received the following information from my friend Andre that created the "Fly for MS" website:

"I think you will be excited: in less then four weeks, we have managed to gain the official, active support of the National MS Society, the MS International Federation, and of virtually all the MS societies in the 28 countries we plan on visiting. Together, these countries account for 1.4 million people with MS, or 70% of all people with MS worldwide. "Fly for MS" stands to be one of the most impactful MS awareness events ever organized.

Just a week after launch, our website (www.flyms.org) received visits from 41 countries around the world, as far as Australia and Indonesia, without any advertising or even a press release.

Also, we are now incorporated as a non-profit charity, with 501(c)(3) Federal tax exempt status filed.

Also, the NMSS will feature us on their webpage, which generates 500,000 hits a month, once we have the dates firm."

Pretty neat, huh?

Because I'm still a little tired, I'm going to go have a late lunch, so that's all for now..., until next time everyone, take care of each other...,

((((hugs))))

Love, Lauren :)

2010-07-21T10:28:00.000-07:00

My Tysabri Diary...

Hi everyone, I recently had the pleasure of speaking with the founder of "Fly for MS", Andrei Floroiu, and I am proud to inform anyone interested in MS awareness (i.e., MS patients, caregivers, family members of MS patients, friends of MS patients, the medical community, etc.) that there is a fantastic site entitled "Fly for MS" which can be found by going to:

http://www.flyms.org/index.html

"Fly for MS" is a record-making endeavor meant to raise awareness for multiple sclerosis (MS) in the US and Europe. Their pilots will take off from New York aboard a small plane for a trans-Atlantic journey spanning 20,000 miles (32.000 km), almost enough to circle the globe, taking them to 27 countries in five weeks. The undertaking will be very challenging for both man and machine: fewer than 300 people have flown a small plane for such a distance on a single journey, compared to over 4,100 successful climbs on Mt. Everest.

Also, their FaceBook group is up as well; just search for "Fly for MS", click "like".

During the journey, they will fly for treatment MS patients who cannot reach distant MS centers, and share the joy of flying with other patients.

Also, they will offer broader audiences concomitant online broadcasts and traditional media coverage of the fascinating sights and diversity, the happiness and human drama, and the very real challenges and risks they will encounter. The endeavor will be recorded in real-time by one of their crew, a noted photographer, journalist, and director.

Their website goes on to state: "MS is in dire need of increased awareness. It is an "invisible" disease caught in a vicious circle: public ignorance forces MS sufferers to withdraw, thus becoming invisible to the rest of us, perpetuating the ignorance. Our headline-grabbing endeavor will generate the public opinion impact needed to inform and to get governments, employers and society in general to change their attitudes towards MS sufferers. We will also inspire and give hope to those touched by MS."

I would highly encourage everyone that has been touched by MS to visit their website. They now have all the largest MS organizations in both the US and Europe, at the highest levels, supporting their effort.

God bless those that actually cared enough to take on this endeavor of "MS awareness" for those of us living with MS.

((((hugs to all))))

Love, Lauren :)

2010-07-07T10:07:00.000-07:00

My Tysabri Diary..., I just posted the following on a very popular MS board:

Congratulation Sean, I was sick every weekend from Avonex, and Copaxone did nothing for me, so I'm glad to be rid of the shots altogether.

I just completed my 49th Tysabri infusion yesterday, so I'm a little tired, and will probably just have a light dinner and turn in for the evening.

SaLe: I'm so sorry that this happened to you, but temps can sometimes do really stupid things such as what happened to you. Just let your husband complain to the infusion Center's administrator and then let it go, because you don't need any additional stress in your life, nor do you want to develop the "reputation of being a difficult patient" at the infusion center. Of course, this is only my opinion from being a certified paralegal for more than 26 years.

To Eagle:

You asked, "- What happens if after I begin the Tysabri, my body begins to produce antibodies to the Tysabri too? "..., if that should happen, your neurologist will probably take you off Tysabri, but to be honest with you, Copaxone is the least effective of the different DMDs (Avonex, Betaseron, Rebif, and Tysabri).

"- Does anyone else have a port to receive the medication through? I was told I might be a good canidate for a port because of all the steroids I have received in the past six months have messed up my veins and I am considered a "hard stick patient."..., I don't have a port, but some people do, and they love it

"- How in the world am I going to be able to afford it? I have just landed my first job. I will be starting in August! I will be a Second Grade Teacher. I will barly be able to pay for my medical bills and the general cost of living. So is Tysabri really as expensive as I am scared it will be?"..., first of all, Tysabri is not expensive-it's less than twice the cost of the different DMDs-it is the infusion which can be expensive-plus,Biogen has different programs to assist patients that cannot afford Tysabri. Once you enroll in the "Touch" program, you should discuss these different programs with your assigned Tysabri Case Manager. Also, if you have "Major Medical" on your insurance policy, the medication and the infusion should be covered 100% under that provision.

"- I am only 22 years old. Do I really want to risk taking a medication that may cause PML?"..., you will only be at risk for developing PML if your immune system drops too low and cannot fight off the "activated" JC virus [which is what causes PML], if you actually carry the dormant JC virus. There are various tests [the ELISA test] which can be run to check the status of your immune system, and there is also a test which can determine whether or not you carry the dormant JC virus, and a test through Eugene Majors' lab at the NIH to determine whether or not you carry the PML virus. There is also plasmapheresis exchange to rapidly remove Tysabri from your system should you carry the PML virus.

But it is always best to discuss these different options with your treating neurologist. I hope that some of this information helps calm your fears.

All my best to everyone here, Lauren

((((hugs to all))))

Love, Lauren :)

2010-07-05T11:44:00.000-07:00

(heehee)

My Tysabri Diary... A very happy belated Fourth of July to everyone...,

I watched the entire HBO series "John Adams" over the weekend, and it really brought to light the true meaning of the doctrine "The Declaration of Independence", and it honestly gave me a new appreciation for celebrating the Fourth of July holiday.

Hopefully, everyone had a safe and glorious holiday..., tomorrow I go for my 49th Tysabri infusion (gosh, have I really had that many already?). Seems like I just started this therapy only a few months ago, and yet, I've been on this therapy for more than three years, whoa! :)

I'll report back later this week after my infusion..., take care everyone!

((((hugs to all))))

2010-06-09T10:32:00.000-07:00

My Tysabri Diary...,

Hi everyone, I just posted this on a very popular MS website:

Congratulations to you Jan, MSchick, and anyone else I forgot (LOL)...,

I had my 48th Tysabri infusion yesterday, and I'm a little tired (which is the only side effect I ever feel), and that wears off in a couple of days, then I get a burst of energy, yay!

Nothing new to report other than our little infusion center has a new Tysabri patient, yay again! I hope that he is able to feel some symptom relief with the help of Tysabri, as I wish for all of you as well!

Good luck everyone, and take care--Lauren

((((hugs))))

Love, Lauren :)

2010-05-31T10:37:00.000-07:00

My Tysabri Diary.....,

Happy Memorial Day to everyone! Let us take this day to not only enjoy our families and friends but to also remember those [soldiers] who had placed their lives in danger---fallen heroes that paid the ultimate price of giving their lives..., no words could ever express how much we all appreciate our veterans.

On a different note, I responded to a post on the Health Talk blog from a woman/sister of a MS patient who recently passed away from PML..., below is her post and my reply to it--enjoy, remember, and love the ones you hold dear to your heart while you still can...,

((((hugs))))

Love, Lauren :)

Here is the post from this sister to which I responded:

http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/new-information-from-the-fda-on-tysabri/?comments_page=6&cmt_sort=0&nkr=1

56. Mar 18 2010
9:33 pm Hi all. I apologize for taking so long to get back to you - I’ve needed some time…talking Tysabri and PML is so painful. Tonight is good for me because I have been able to research more and get in touch with my feelings about everything that happened to Jenni. She was diagnosed with MS 6 years ago and it was very aggressive. I know she tried several different MS drugs (forgive me for not knowing names and more details) and they were not controlling the lesions and exacerbations for the first 3 1/2 years. After much research, education and prayer she decided to take Tysabri. She had excellent quality of life and was lesion free for 2 1/2 years! She was registered with the TOUCH program and in frequent contact with her doctors. In November she started experiencing symptoms (numbness, vision and hearing problems on the left side; forgetting what she just said, difficulty finding the word to say, she would also say that she just didn’t feel like herself…it was like someone else was in her body) If I understand correctly, she contacted her neuro every day in november trying to get an MRI b/c she knew something wasn’t right. The office wouldn’t return her calls and her neuro kept putting her off and telling her it wasn’t time for her MRI. Jenni complained about all her aches/pains frequently so I’m thinking the neuro might have blown her off a bit. Finally, she sat herself in their office until they scheduled an MRI for her. She got her results at the end of January and sure enough they found many “suspicious lesions”. They didn’t look like typical MS lesions and didn’t look like typical PML lesions so they ordered the lumbar puncture to look for the JC Virus….those results took over a week to get. By now, her symptoms had gotten increasingly worse (almost within a week’s time). She was still very numb on the left, speech was very childlike - few words per statement - some speech was unclear - she would not be able to find the right word - she felt “dumb” and knew her mind wasn’t working right but couldn’t control it - she had difficulty understanding what we were explaining to her. As soon as they finished the lumbar puncture they talked about starting her on steroid doses while they wait for results. They gave her one dose and said if her symptoms didn’t improve by the 2nd dose they would admit her. After no improvement from the first steroid dose they went ahead and admitted her. While in the hospital, her vitals remained stable but her disposition became quite irritable. She was a smoker (which is discouraged in hospitals) so this made her irritable. Basically all her symptoms remained the same or slightly worse. After about a week or so they discharged her since they were just keeping her for monitoring while they waited for the JC Virus results and she was so irritable. A few days later they got the call that she tested negative and had PML. They started plasma pheresis the next morning and remained in the hospital for 2 weeks while receiving all the doses. She was discharged the day after her last treatment. She was still just as symptomatic but there was nothing else they could do but wait to see how her body responded to. We all sat back and waited for those “good weeks” I kept hearing about and then suspected IRIS to come where they would then give her several steroid treatments. Anyway, a few days after being home she started becoming very confused, discouraged, irrational upset and was experiencing a lot of pain in her head. They re-admitted her and within a few days she deteriorated severely: limited eating, dragging left foot, stopped talking by Friday night. Saturday afternoon I received a call that the doctors felt she might not make it through the night. We rushed down and she had been experiencing twitches and was now posturing. She was bruised from all the posturing. She was not talking, but could visually lock onto you and track you around the room. By Sunday night she was no longer posturing b/c the morphine and Valium were controlling her pain and she would no longer look and track you….she would just stare straight ahead almost blankly. That night they admitted her into a wonderful in-patient hospice facility. The admitting doctor noticed her pupils weren’t dilating properly and suspected her brain had started swelling. Monday she was having trouble swallowing and was very rattly. They gave her meds to clear her up. That afternoon was probably the last time I witnessed her being able to show some sign of being aware of what was going on around her. After that I am not sure what she was aware of b/c she showed no signs. Her eyes remained slightly closed from this point on, her breathing fluctuated and by wednesday afternoon she passed. It was devastating and all happened so quickly. I am not sure how I feel about Tysabri at this point. I am grateful for the 2 1/2 years of time it gave her. But am so upset that it did not give her the time she needed in the end to get her affairs in order and properly prepare and say goodbye to her 3 young daughters and husband. It was truly horrific and a terrible way to die. I thank all of you for your words of support and kindness and if there is ANYTHING I can do to help you in your decision/journey with Tysabri I would be more than happy to. Our family did consent for an autopsy so I am anxiously awaiting those results to hopefully get more information. One of the most frustrating things throughout this experience was the lack of information out there both on the internet and from her very own doctors. I can’t tell you how many times I heard “we don’t know….we’ll just have to wait and see….we just have to hope and think positive…” If there is anything I can do to prevent any of you from having to go through that I will. Just ask any questions you may have and I will do my best at answering them. Take care… Posted by Tawnya

Subsequently, I was able to calm the fears of most patients on Tysabri therapy who reviewed the post, and here was my reply:

Dear Tawnya:

Please accept my condolences for the loss of your sister, I am so very sorry to hear that she passed away.

I read your post and I discussed this with a neurologist friend of mine who has patients on Tysabri. He practices out of one of the largest MS clinics in Atlanta, Georgia, and is quite familiar with Tysabri, the trials, etc. I will paraphrase below most of his comments to me regarding Jenni who recently passed away from PML -- ***please keep in mind that you did not know which medications Jenni was previously on or for how long, but you did state that she previously was on medications, so for all we know she could have previously been on Azathioprine/Imuran, Methotrexate, Novantrone, CellCept, etc., all of which remain in the body for a long time even though previously discontinued by the patient prior to starting Tysabri, and they can severely suppress the immune system, so she could have already been immune compromised.***

Here is what my neurologist friend told me: "I don't know where the ladies doc [Jenni's doc] sent the test[the CSF/lumbar puncture spinal fluid to test for the presence of JC virus], but it likely was not NIH. When a suspected PML case comes up they are supposed to notify BIIB and send samples to NIH. [this is laboratory where the specific sensitive test was developed by Eugene Majors and is JC virus sensitive], not all laboratories use this specific test. It can take a bit of time for the confirmatory test. I hear up to a week.There may be a small number of PML patients initially misdiagnosed as MS, but I have real doubts it would take many months to further manifest symptoms. I think what actually happens is PML develops and it is confused with a MS flare up. I am still am inclined to believe that the family is a bit confused about the information. We see that all the time at our clinic."

He further gave me the following information which I looked up:

"DIAGNOSTIC CONSIDERATIONS"

“Rapid diagnosis of PML is critical due to the aggressive nature of this potentially lethal condition, but symptoms of PML are often mistakenly assumed to be exacerbations of MS,” Dr. Clifford said. “At present, new neurological disease should be considered PML,” he said. Symptoms of PML include neurobehavioral changes, motor symptoms, changes in language, and new visual symptoms; seizures can also occur.

PML is caused by the JC virus detected in the CSF. However, a negative CSF PCR for JC virus assay does not rule out PML, Dr. Clifford said. The sensitivity of the assay depends on the test used and the disease setting.

“The viral titers are so low that many commercial or local PCR assays are too insensitive to detect the virus. Expanding the availability of reliable and ultrasensitive assays like the one available through Eugene Majors' laboratory at the NIH is necessary to detect the virus routinely in this condition,” he commented."

My neurologist friend went on to say: "My guess is that the original test performed checking the CSF for the JC virus was not sensitive enough to detect it, combined with the fact that her neurologist initially "blew off" her reporting the symptoms early on, plus his failure to act promptly. A definite malpractice case for sure, and a disaster just waiting to happen.

If the sister has her story straight, there is a damned good case for malpractice as there would have been at least two and maybe three more infusions during the time she was concerned.

As you know ANY neurological changes should be reported at an infusion check. How she was unable to see a doctor is beyond me.

Many things known and unknown can trigger PML, I think it is now fairly clear that vigilant Docs are required. It is unbelievable she could not get in for two months and if they continued Tysabri during that time they were killing her. Biogen should be notified of her early warning and lack of attention."

I then went on to say: So in essence, it was her doctor's failure to: 1) act promptly which caused the delay in obtaining the MRI; 2) immediately discontinue Tysabri therapy; and 3) have her CFS tested for the JC virus at Eugene Majors' lab at the NIH.

Because those of us on Tysabri all know the risk of developing PML (even though it is still a very small risk), both our doctors and us have the responsibility to stay aware and vigilant of any possible signs which could lead to developing PML.

I have had 47 Tysabri infusions so far, and have been on this treatment for more than three years..., my MS is now stable and I have not had one single relapse since October 2006.

Again XXX, my sincerest condolences for your loss.

Lauren

2010-05-12T12:06:00.000-07:00

My Tysabri Diary...

Before I discuss my 47th Tysabri infusion, please note what I have posted on a popular MS website, where one person was looking for a "guarantee" with Tysabri therapy, and another person answered their questions, but I added the following post to the website on that thread:

"I would have to agree with XXXs' answer in her post to you XXXX, with the exception of this statement "in fact it is, strictly speaking, only supposed to prevent further deterioration or exacerbations, not improve current function"..., Tysabri was designed to prevent further relapses and slow the disease process down, and there is proven data which supports the claims that Tysabri has sustained effect on relapses for up to three years, demonstrates the improvement in a MS patient's Quality of Life, reduces vision loss, demonstrates improvement in cognitive function, demonstrates improvement in function (providing the prior damage is not permanent), demonstrates significant reduction in steroid use & hospitalizations, promotes re-myelination, and provides greater treatment satisfaction as reported by MS patients. All of these claims are backed up by data which I have posted here on this thread numerous times.

There are no "guarantees" with any medication on the market, no matter which medication you are at asking about. If any medication to treat MS comes with a "guarantee", that is nothing more than false advertising, because nothing in life is guaranteed other than eventually death.

So going on better things to discuss, I completed my 47th Tysabri infusion yesterday, and even though I'm still a little bit tired today, I slept really, really good last night and probably will sleep well again tonight..., I get my "burst of energy" approximately 3 to 4 days after my infusion. And I must say this infusion went really well because not only did my infusion nurse get a good vein on the first stick, there were two new infusion nurses being trained to be "Touch Certified", and were asking all kinds of questions about Tysabri & MS (guess I was in the right place at the right time, huh? - heehee)."

Have a great day everyone - Lauren

2010-04-29T12:09:00.000-07:00

My Tysabri Diary...

Whoa, new data just released, enjoy..:

http://newsroom.elan.com/phoenix.zhtml?c=88326&p=irol-newsArticle&ID=1413976&highl...

"16 April 2010

Patient-Reported Outcomes Study Shows Improvements In Quality of Life Among Patients After One Year of Treatment with TYSABRI®

Data also showed reduced fatigue and improved cognition

TORONTO – April 16, 2010 – Biogen Idec (NASDAQ: BIIB) and Elan Corporation, plc (NYSE: ELN) today announced results from a one-year, longitudinal health outcomes study (n=324) in which patients with multiple sclerosis (MS) who received 12 infusions of TYSABRI (natalizumab) reported improvements in quality of life (QoL) measures, as measured by validated tools. The goal of the study, which was performed in conjunction with HealthCore Inc., a health-outcomes research company, was to assess patient experiences with TYSABRI in a real-world setting. This research was presented in three posters at the American Academy of Neurology’s (AAN) 62nd Annual Meeting in Toronto, April 10 - 17, 2010. The AAN Annual Meeting is the world’s largest gathering of neurologists.

“Because MS is such a debilitating disease that affects patients physically, cognitively, psychologically and socially, it can have a significant impact on their quality of life,” said William Stuart, M.D., Medical Director of the Multiple Sclerosis Center of Atlanta. “These analyses, based on patient-reported outcomes, are critical to understanding the benefits of treatment with TYSABRI over the long term and in a real-world setting.”

The one-year longitudinal study assessed health outcomes from the perspective of the patient using validated patient-reported outcome (PRO) measures prior to treatment initiation and after the third, sixth and 12th infusion with TYSABRI in a real-world setting. A majority of the patients in the study were female (77.8%) with mean age of 46.7 years and mean years since diagnosis of nine years.

Quality of Life Study Results

After one year of treatment, patients reported statistically significant improvement in:

general health-related QoL, as measured by the 12-item Short Form Scale (SF-12v2), with higher scores indicating better QoL
MS-specific QoL, as measured by the 29-item Multiple Sclerosis Impact Scale (MSIS-29), with lower scores indicating better QoL

Both scales report the physical and psychological aspects of QoL in two summary scores. For both scales changes in mean scores from baseline through the 12th infusion were evaluated after adjusting for baseline patient-level and treatment characteristics.

SF-12v2 Physical Component Summary (PCS) scores improved significantly from baseline (BL 34.25, 12th 36.66; p<0.001)>.

Similar improvements were observed in the Mental Component Summary (MCS) scores, which also improved significantly from baseline (BL 43.13, 12th 46.77; p<0.001).

After controlling for covariates, a statistically significant improvement was also observed in MSIS-29 physical impact scores (BL 47.38, 12th 40.43; p<0.001).>(BL 42.01, 12th 34.09; p<0.001)>

The results of these findings are consistent with results from pivotal clinical trials and show the beneficial impact of TYSABRI on QoL in MS patients. Results show that improvements were seen as early as three months and were sustained for 12 months.

The poster titled Improvement in Health-Related Quality of Life in Multiple Sclerosis Patients Receiving Natalizumab in the United States (P02.166) was made available for viewing on April 13 from 3-7:30 p.m. EDT. The poster titled Effect of Natalizumab on Disease-Specific Quality of Life after One Year of Natalizumab Treatment (P02.164) was made available for viewing on April 13 from 3-7:30 p.m. EDT.

Fatigue and Cognition Study Results After one year of treatment, patients reported:improvement in cognitive function lower impact of fatigue on daily functioning.

Cognitive function was measured by the six-question Medical Outcomes Study Cognitive Functioning Scale (MOS-Cog Scale, score range 6-36) with higher scores indicating better reasoning skills, memory, concentration, ability to start several actions at one time and ability to react. Fatigue was measured by the five-question Modified Fatigue Impact Scale-5 (MFIS-5, score range 0-20), with lower scores indicating lower impact of fatigue on physical, cognitive and psychosocial functioning.

After controlling for covariates, on average MOS-Cog scores increased significantly over time (BL 25.12; 12th infusion score 26.19, p=0.0006), indicating improvement in cognitive function, and MFIS-5 scores decreased significantly (BL 12.36; 12th infusion score 11.16,p=0.001), suggesting lower impact of fatigue on daily functioning.

TYSABRI is approved in more than 45 countries. In the U.S., it is approved for relapsing forms of MS and in the European Union for relapsing-remitting MS.

Data from the Phase III AFFIRM trial highlights TYSABRI’s powerful efficacy. According to that data, which was published in the New England Journal of Medicine, after two years, TYSABRI treatment led to a 68 percent relative reduction (p=0.001).

TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), an opportunistic viral infection of the brain. The risk of PML increases with increasing duration of use. Other serious adverse events that have occurred in TYSABRI-treated patients include hypersensitivity reactions (e.g., anaphylaxis) and infections, including opportunistic and other atypical infections. Clinically significant liver injury has been reported in patients treated with TYSABRI in the post-marketing setting. Common adverse events reported in TYSABRI-treated MS patients include headache, fatigue, infusion reactions, urinary tract infections, joint and limb pain and rash.

TYSABRI is co-marketed by Biogen Idec Inc. and Elan Corporation, plc. For more information about TYSABRI, please visit www.tysabri.com, www.biogenidec.com or www.elan.com, or call 1-800-456-2255"

((((hugs))))

Love, Lauren :)

2010-04-18T12:07:00.000-07:00

My Tysabri Diary...,

Whoa, the latest press release regarding Tysabri & the possible link to PML is now out..., the entire press release can be found at:

http://newsroom.elan.com/phoenix.zhtml?c=88326&p=irol-newsArticle&ID=1412100&highlight=

When I carefully read the press release, I noted the following information in same which I found extremely interesting: (the bold and italicized type is mine)

'AAN platform presentation shows MS patients treated with TYSABRI experienced no substantial changes in the presence of JCV DNA, and second platform shows that patients who developed progressive multifocal leukoencephalopathy (PML) had evidence of antibodies to JCV that suggests prior infection.

One platform presents data suggesting that treatment with TYSABRI does not have a substantial effect on the presence of JCV DNA in MS patients. In the Dose Suspension Safety Assessment (n=1397) and STRATA (n=1094), JCV DNA was detected in less than 1 percent of all patients, approximately 50 percent of whom were TYSABRI naive.

The second platform presents data indicating that patients who developed PML had evidence of prior infection with JCV, as measured by the presence of anti-JCV antibodies. Investigators evaluated serum samples from TYSABRI patients who developed PML where blood samples had been collected at least one year prior to the diagnosis of PML. Most of these samples were collected prior to beginning treatment with TYSABRI. In all of these patients, serum samples were positive for JCV antibodies prior to onset of PML, suggesting pre-existing JCV infection in these patients.

Even though I'm not a doctor, this suggests to me what I believed & have been posting here and on the different MS boards all along -- that being the patients who developed PML and were previously immune compromised due to being on previous medications such as Azathioprine/Imuran, Methotrexate, Novantrone, Remicade, etc., and then became Tysabri patients, when they already had the JC virus which was no longer dormant--this is when Tysabri started getting the bad rap for causing PML, which has been proven NOT to be the case--it was the prior medications which left them immune compromised and with them already having the dormant JC virus (and we now know this because they showed antibodies to the virus in the testing/trials) which became activated because of this prior condition, thus causing PML.'

Somehow, I feel vindicated as a patient on Tysabri therapy.

Have a good day everyone.

((((hugs))))

Love, Lauren :)

2010-04-15T13:32:00.000-07:00

My Tysabri Diary.....,

Hi everyone, there has been much discussion and confusion regarding whether or not the test/assay is available for patients to test for the JC virus.

A neurologist friend of mine that is Touch Certified, and has many patients of his on Tysabri, informed me of the following with regard to the JC assay/test:

"The blood assay/test is not a direct test for JC Virus, but a test for antibodies to the JC virus. The theory being 'all previously exposed to JCV will have developed antibodies to the JC virus. No exposure, then no antibodies and then no risk for PML', that is the theory anyway. It is my understanding that all TOUCH facilities may request to join the trial. The first 9000 current Tysabri patients will be given the tests at no charge, and Biogen will pay the doctor/infusion center for the extra time involved."

Once I get more information as it becomes available from him, I will post it.

Have a good day everyone!

Lauren

2010-04-14T13:36:00.000-07:00

Hi everyone, I completed my 46th Tysabri infusion yesterday. I wish I could say it went without a hitch, but after being stuck three times with a needle to get an open line-I was left bruised and battered. I now have three different bruises on my arm, two the size of thumbnail prints on my left arm and one bruise the size of a softball on my right arm which is really hurting today, but at least I got my Tysabri yesterday.

I have been discussing Tysabri with a current Tysabri patient and she asked me the following questions via an e-mail. I need to go rest my arm now as it is starting to hurt again, take care everyone-Lauren

Subj:	Re: Tysabri
Date:	4/14/2010 12:51:29 PM Pacific Daylight Time
From:	LGLBGL2003@aol.com
To:
Sent from the Internet (Details)

Hi again XXX,

It respond to your questions:

In a message dated 4/13/2010 11:10:13 PM Pacific Daylight Time, XXX@aol.com writes:

I wanted to ask you...
have you heard whether or not they have a test.. blood test??? to determine whether or not we are positive for the JC Virus??? cuz after being on Ty for over 2 years or so I know "they" are somewhat more concerned about the possibilities for the dreaded... PML
my doc said he thought it was developed and available but he was not sure what to actually "order" so I could be tested...
also how do you feel about "drug hoidays" from tysabri...
I do not want to take a drug hoiday... I want to continue taking it with no break...
How do you feel about this???

Yes, there is a blood test available to check for the JC virus, but I am unsure whether or not it is available to the general public or whether or not it is only available through a trial where it is being tested..., I am also unsure whether or not the test is for a dormant version of the JC virus you may or may not be carrying or an activated version of the JC virus-your neurologist needs to call Biogen himself & request further information as to what he needs to " order" for you. I'm sorry I don't have the exact information you need, but your neurologist needs to get this information directly from Biogen.

As to "drug holidays" my neurologist does not believe in them because there is no scientific data supporting drug holidays. In fact, the Tysabri label states at the end of page 6 & the beginning of page 7:

"Experience with monoclonal antibodies, including TYSABRI, suggests that patients who receive therapeutic monoclonal antibodies after an extended period without treatment may be at higher risk of hypersensitivity reactions than patients who received regularly scheduled treatment. Given that patients with persistent antibodies to TYSABRI experience reduced efficacy, and that hypersensitivity reactions are more common in such patients, consideration should be given to testing for the presence of antibodies in patients who wish to recommence therapy following a dose interruption. Following a period of dose interruption, patients testing negative for antibodies prior to re-dosing have a risk of antibody development with re-treatment that is similar to TYSABRI naïve patients".

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/includes/redirect.xml&resource=/en_US/tysb/site/pdfs/TYSABRI-pi.pdf ..., in other words, my neurologist is not willing to put me at a higher risk for developing hypersensitivity reactions, antibodies to Tysabri, and then experience a reduced efficacy of the medication should I interrupt my dosing schedule and then recommence my Tysabri therapy.

I just completed my 46th Tysabri infusion yesterday, have been on this medication for more than three years, and both my neurologist and myself are quite pleased that I have not had a relapse nor any new active lesions for more than three years, so neither one of us plan on stopping Tysabri for a so-called "drug holiday".

Hope this information is of some help to you. Take care dearheart--

Lauren :)

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