Living With MS

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

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

4 Comments:

  • At 6:19 AM, Blogger John said…

    Four years on Tysabri infusions?? Now I know how lucky I am that am healthy. It is most important that this medicine helps and your medical condition is better after taking it. Good luck!

     
  • At 9:07 AM, Blogger Lauren said…

    Thank you for your comments John, it has actually been more than four years on Tysabri.

    This medication has kept my MS stable and after having MS for more than 35 years, that's saying something!

    Thank you again John, have a wonderful holiday. All my best to you and your family during this holiday season -- Lauren :)

     
  • At 7:46 PM, Anonymous Courtney said…

    Lauren, your blog is inspiring. I was diagnosed in October and am currently waiting for my blood tests to be back next week to see if I can be on Tysabri. I found your blog when I was searching for info on Tysabri. The stories you tell about yourself and others on the drug have really helped me to see that the diagnosis last month was not a death sentence, but a bump in the road of life. Thank you so much for the info that you have put out.

    Courtney in Colorado

     
  • At 9:36 AM, Anonymous Angela Deely said…

    Hi Lauren,
    Are you still taking the Tysabri? And if so, what number infusion are you on? Have you had any difficulties lately? I have tons of questions because my husband with MS has been getting Tysabri infusions for almost 2 years and his neurologist has recommended switching to Gilenya to avoid getting PML. Nothing else has ever worked for him but the Tysabri and he's contimplating on staying or changing due to the risks. But there are risks of both so I would like to get some feedback from you. I know every case is wildly different but I would still love to hear from someone with so much experience.

    Angela

     

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