PatientsLikeMe : Natalizumab Treatment Report

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Natalizumab Treatment Report

Most Popular Brands: Tysabri

Generic Name: Natalizumab

See patients taking Natalizumab

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	# of patients	# of patients evaluated by
Slow my MS progress	599	160
Multiple Sclerosis (MS)	55	25
Other	33	11
General health	14	5
Fatigue	13	5
Stiffness/Spasticity	12	4
Mobility	8	5
Sensation	6	3
Weakness in legs	6	3
Don't know	5	1
Vision	4	2
disease-related symptoms	2	0
no energy	2	1
Pain	1	0
transfering	1	1
Walking & Balance Problems	1	0
Numbness in legs	1	1
walking problems	1	1
MS treatment	1	0
visual aura	1	0
Copaxone stopped working	1	0
iv, every 4 weeks	1	0
changing from avonex	1	0
Assistive communication	1	0
Recover some of functional loss	1	0
other tx weren't working	1	0
Leg weakness	1	0

See all 27 reasons taken ▼

See all 684 patients currently taking Natalizumab

Mouse over the table for more information

Side Effects

Side effects as an overall problem

Severe	13	7%
Moderate	23	12%
Mild	56	28%
None	108	54%

Most commonly reported side effects

tiredness	48	24%
Headaches	36	18%
fear of PML	24	12%
Head pain	14	7%
quick changes of mood	13	7%
Stomach pain	13	7%
Urinary Tract Infection UTI	13	7%
Allergic reaction	12	6%
rash and itching	8	4%
Nausea	5	3%
weakness	3	2%
Back pain	3	2%
Lethargy	2	1%
Infection	2	1%
hair loss	2	1%
euphoria	1	1%
Mouth sores/ulcers	1	1%
near blackouts	1	1%
Leg pain (both)	1	1%
Developed Antibodies	1	1%
muscle deterioration	1	1%
joint pain	1	1%
Pain	1	1%
Herpes	1	1%
Nausea/sickness	1	1%
Clear vision	1	1%
procressing of ms	1	1%
severe confusion	1	1%
fatigue, dizziness	1	1%
Chest tightness	1	1%
face breaking out mildly	1	1%
Dizziness	1	1%
Hair whiting	1	1%
heightened energy	1	1%
Possible upper respiratory infection	1	1%
profuse sweating	1	1%
balance became worse	1	1%
pustules/ lesions on legs	1	1%
Bladder problems/bowel	1	1%
easily get sick	1	1%
Bad taste in mouth	1	1%
Cough	1	1%
Better balance	1	1%
experienced several acute dizzy spells	1	1%
Bladder problems	1	1%
metal taste in mouth	1	1%
possible reaction	1	1%
Sinus problems	1	1%
Bladder infection (Cystitis)	1	1%
gums desolving	1	1%
Stomach ache	1	1%
chest/respiratory symtoms	1	1%

Mild
Moderate
Severe

See all 52 reported side effects ▼

Dosages

Top 10 dosages based on patients currently taking Natalizumab. See all 21 dosages ►

300mg/15mL as needed	300mg as needed	monthly	1 g monthly	1 mg monthly	1 monthly	4 mg monthly	5 mg monthly	20 mg monthly	25 mg monthly	30 mg monthly	50 mg monthly	100 mg monthly	200 mg monthly	200 mg every 4 weeks	300 mg/15 mL monthly	300 mg monthly	300 mg/15 mL every 4 weeks	2 x 300 mg/15 mL every 4 weeks	1000 mg monthly	300 mg/15 mL daily
3	1	157	1	2	4	1	2	1	1	2	1	1	4	1	245	42	186	1	1	14

Stop Reasons

Why Patients Stopped Taking Natalizumab (multiple reasons could be selected)
Reason	# Patients	Percentage of patients
Other	50	33%
Doctor's advice	46	30%
Side effects too severe	45	30%
Did not seem to work	42	28%
Expense	9	6%
Personal research	3	2%
Course of treatment ended	3	2%
Not indicated	3	2%

See all 145 patients who’ve stopped taking Natalizumab

Duration See details about how long patients take this treatment ▼

Currently Taking Natalizumab

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
7	30	43	71	114	92

Stopped Taking Natalizumab

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
15	27	26	39	31	6

Adherence, Burden & Cost See details from patient evaluations ▼

Adherence

Taking treatment as prescribed

Always	190	95%
Usually	8	4%
Sometimes	1	1%
Never	1	1%

Burden

Difficulty being on treatment

Very	13	7%
Somewhat	16	8%
A little	63	32%
Not at all	108	54%

Cost

Paid out of pocket

$200+	32	16%
$100-199	10	5%
$50-99	12	6%
$25-49	18	9%
< $25	57	29%

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

Patient Evaluations

See all 200 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 monthly

since May 13, 2009
Efficacy Major for Slow my MS progress
Side Effects None
See full evaluation

HopeLives

Sex: F

Flare-up: Moderate

Sensation: None

Overall: Mild

Cognition: none

Vision: moderate

Speech: none

Swallowing: none

Upper limb: mild

Walking: moderate

See profile
HopeLives

300 mg/15 mL monthly

since Sep 15, 2008
Efficacy Moderate for Slow my MS progress
Side Effects Severe
Advice/Tips Drink lots of water. Relax and watch tv or movie or read a book. See full evaluation

LadyMac

Sex: F

Sensation: Moderate

Overall: Mild

Cognition: none

Vision: mild

Speech: none

Swallowing: mild

Upper limb: mild

Walking: moderate

See profile
LadyMac

300 mg monthly

since Aug 18, 2008
Efficacy Can't tell for Slow my MS progress
Side Effects None
Advice/Tips Just be positive about the drug, that it's for you and what you need and want. Positive thinking can help more then one thinks. I'm looking forward to my n... See full evaluation