Living With MS

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

Saturday, May 26, 2012



My Tysabri Diary... 

I received very sad and disturbing news from my neurologist..., he ordered a JC virus blood test to see if I carried the JC virus antibodies... well it came back positive that I carried the JC virus antibodies and he advised me that none of his Tysabri patients that were JC virus positive were on Tysabri, he was not willing to take the risk of me developing PML, and that he was discontinuing my infusions.  He wanted to put me back on Avonex or Copaxone (both of which I was on  before and both did not work for me) or he wanted me to try Rebif or Betaseron.  When I told him no to all that  he suggested, advising him that interferons and glatimer acetate do not work for me, he suggested that I receive monthly infusions of Solumedrol (are you kidding me?).

When I started arguing with him that he was not willing to risk me developing PML (we started arguing about monitoring any new symptoms I might develop, checking my CD count, plasmapheresis exchange) but was willing to risk putting me on pack on interferons, glatimer acetate or suffer the side effects of monthly steroids, I told him absolutely not and that I wanted a second opinion.

All of this was very upsetting to me because I worked so hard along with other MS patients to get the FDA to reapprove Tysabri, struggled so much with Kaiser to get back on Tysabri to begin with, and more than likely none of their neurologists would be willing to continue Tysabri infusions if their MS patients were carrying JC virus antibodies, then to be left with no treatment options that work for me, and hope that I can find a numerologist within their network that will put me back on Tysabri before I have another bad relapse, I feel like I'm back at square one all over again.

So I won't be posting again unless I get some good news..., it has been wonderful knowing all of you and I will never forget your friendships and the support you have shown me over the years.  From the bottom of my heart, I will miss you all.

Take care everyone --

Love, Lauren

Sunday, April 08, 2012

(LOL)


My Tysabri Diary...

I wanted to take this opportunity to wish everybody a very blessed and happy Easter Sunda...,

I'm off to go visit my sister and her family.

Take care everyone...,

((((hugs))))

Love, Lauren :)

Sunday, March 25, 2012




My Tysabri Diary...,

Hi everyone, I completed my 71st Tysabri infusion on the 13th, and everything went fine. My nurse informed me that they have two new Tysabri patients, woo hoo!

I hope everyone had a happy and safe St. Patrick's Day, I also hope that everyone has a very nice upcoming week..., bye for now everyone --

((((hugs))))

Love, Lauren :)

Saturday, February 18, 2012




My Tysabri Diary...,


Hi everybody, I completed my 70th Tysabri infusion on Tuesday, and everything went fine..., nothing new to report. I'm off for an early lunch, and I hope that everybody had a wonderful Valentine's Day and has a wonderful upcoming week.

Bye for now --

((((hugs))))

Love, Lauren :)

Monday, January 23, 2012




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 :)

Saturday, December 24, 2011




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 :)

Wednesday, November 23, 2011




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...,


Enjoy your holiday!

((((hugs))))

Love, Lauren :)

Friday, October 28, 2011

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 :)

Thursday, September 29, 2011




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 :)

Saturday, September 03, 2011






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 :)

Thursday, August 04, 2011




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 :)

Wednesday, July 06, 2011




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 :)

Wednesday, June 08, 2011




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 :)

Wednesday, May 11, 2011




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 :)

Friday, April 15, 2011




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 :)

Friday, March 18, 2011




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 :)

Friday, February 18, 2011




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 :)

Friday, January 21, 2011




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 :)

Friday, December 24, 2010

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!

Saturday, December 04, 2010

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

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

Wednesday, November 24, 2010

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
Major
Major
Moderate
Moderate
Slight
Slight
None
None
Can’t tell
Can’t tell
# 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 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

Dosages

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

All dosages based on patients currently taking Natalizumab. See top 10 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 Number of Patients: 8 142 Number of Patients: 142 1 Number of Patients: 1 2 Number of Patients: 2 4 Number of Patients: 4 2 Number of Patients: 2 1 Number of Patients: 1 1 Number of Patients: 1 2 Number of Patients: 2 1 Number of Patients: 1 1 Number of Patients: 1 2 Number of Patients: 2 1 Number of Patients: 1 4 Number of Patients: 4 1 Number of Patients: 1 371 Number of Patients: 371 40 Number of Patients: 40 537 Number of Patients: 537 2 Number of Patients: 2 1 Number of Patients: 1 1 Number of Patients: 1 1 Number of Patients: 1 3 Number of Patients: 3 13 Number of Patients: 13




Stop Reasons

Why Patients Stopped Taking Natalizumab (multiple reasons could be selected)
Reason # Patients Percentage of patients
Doctor's advice 88
Doctor's advice: 33%
Side effects too severe 84
Side effects too severe: 32%
Other 81
Other: 31%
Did not seem to work 72
Did not seem to work: 27%
Personal research 20
Personal research: 8%
Expense 19
Expense: 7%
Course of treatment ended 6
Course of treatment ended: 2%
Change in health plan coverage 6
Change in health plan coverage: 2%
Not indicated 2
Not indicated: 1%

See all 259 patients who’ve stopped taking Natalizumab

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

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

Adherence, Burden & Cost See details from patient evaluations ▼ 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
  • 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
  • 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
  • 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

Forum

See 324 topics tagged with Tysabri

See 5 topics tagged with Natalizumab

Related tags: PML, Copaxone, Tysabri and PML

There are 13412 posts in our forum about Natalizumab. Join now and see what people are saying.

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