108 patient evaluations for Natalizumab

976 members have decided to share their profiles only with other members of PatientsLikeMe.

Sort by: Helpfulness

May 9, 2012 (Started Oct 16, 2006)

  • Effectiveness
    Major (for multiple sclerosis)
  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: After being our Tysabri for 5 1/2 years, I tested positive for carrying JC virus antibodies at the end of April this year (2012), so my doctor discontinued my Tysabri infusions against my vigor protests (we argued about him monitoring me for any signs of developing PML, changing my infusion schedule to eight weeks, checking my CD count regularly, having plasmapheresis exchange should I developed PML, etc.). I am now seeking a second opinion as Tysabri treatments have definitely worked for me.

Sep 28, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks
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, yeah! I am very happy with this treatment, and my adherence to taking this medication once every 28 days is so very easy.

Aug 3, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: I just completed my 50th Tysabri infusion, and I've noticed that most of my large beauty marks on my legs and tummy are fading, which is wonderful. I continue to have no side effects from Tysabri other than feeling a little tired for two days after my infusion, but then I get a burst of energy which lasts me almost through the date of my next infusion.

Jul 6, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: Most patients pretreat their Tysabri infusions by having a 30 minute Benadryl drip, or taking an OTC antihistamine such as Benadryl tablets, Claritin-D tablets, etc., which can greatly reduce any possibility of having side effects from the medication, or eliminating the possibility of having side effects altogether. Personally, I take a Claritin-D tablet approximately 2 hours before my infusion, and it works just fine. Any pretreatment with an antihistamine should be discussed with your doctor first. Not everyone will experience symptom improvements with Tysabri because more than likely the damage done from prior relapses has become permanent. Tysabri is not designed for patients to show symptom improvements, this is only an added benefit of Tysabri therapy if that patient's damages only temporary and Tysabri helps the body heal itself by blocking a majority of the inflammation T cells from entering the CNS where they can do damage to our myelin. Tysabri was designed to help patients remain relapse free for as long as possible, and to slow the disease process down, and sometimes even stopping it in its tracks. Even though I can no longer walk, I never lose hope with Tysabri because improvements can come at any time, and even if I never walk again, my Quality of Life has significantly improved with Tysabri therapy, and for that I am ever so grateful! One thing I've noticed is that most of my beauty marks are fading, which is a good thing because I'm very light-skinned. The impact of taking Tysabri has greatly eased my fear of waking up each day losing something else to MS. My MS has remained stable for more than three years, having completed my 48th Tysabri infusion in 06/2010; having no relapses throughout that time, with my recent MRIs showing no new lesions, yay! Not bad for having MS more than 35 years, huh?

May 15, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2010 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Oct 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Sep 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Aug 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jul 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jun 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

May 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2009 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Oct 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Sep 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Aug 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jul 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jun 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

May 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2008 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Oct 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Sep 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Aug 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jul 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jun 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

May 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2007 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2006 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2006 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: The emergence of progressive multifocal leukoencephalopathy (PML), a rare but deadly viral infection of the central nervous system (CNS) [is] associated with immunosuppression [NOT Tysabri], see the expert opinions from the authors of the New England Journal of Medicine: http://tinyurl.com/2mhn82. Every MS patient that has been diagnosed with developing PML had become a severely immune suppressed either by previously treating with medications such as Azathioprine/Imuran, Methotrexate, Novantrone, Remicade, etc., all of which can last in the body for a very long time (months and months-causing the immune system to become severely suppressed/compromised), even though some of the medications listed above were previously discontinued by the patient, or they received treatments such as monthly pulse steroids, IVIG treatments (which I can also severely suppress the immune system), or whose immune system was previously modulated (changed) by treating with one of the ABCRs, causing the immune system (which is extremely fragile) to become severely immunocompromised, or whose immune system was already suppressed for whatever reason, or became severely suppressed during Tysabri therapy and their neurologist never intermittently tested their immune system to make sure it was still strong and had not dropped too low where it could not fight off any proliferation of the activated JC virus. There is an assay called the ELISA test which is very sensitive and can be used to test the strength or weakness of a patient's immune system. If a patient is suspected of having developed PML due to activation of the JC virus, there are certain measures which can be taken to ensure the best possible outcome for the patient: 1) have additional MRIs taken and compare them with the MRIs taken prior to starting Tysabri therapy; 2) immediately stop Tysabri therapy; 3) if warranted, send a sample of the patient's CSF to Eugene Majors' lab at the NIH to have a very sensitive test for determining the presence of JC virus DNA, which can develop into PML; 4) initiate a course of plasmapheresis exchange (PLEX) to remove Tysabri completely from the patient's system. PML IS NO LONGER A DEATH SENTENCE if due diligence, awareness, and vigilance is undertaken by both the patient and their neurologist to watch for the development of any new symptoms which are indicative of PML and to act quickly. With over 60,000 patients worldwide on Tysabri therapy (as of June 2010), the risk of developing PML remains 1 in 1000, and is still well within the ratio listed on the Tysabri label.

Oct 16, 2006 (Started Oct 16, 2006)

  • Effectiveness
    Major (for To prevent further relapses and slow the disease process down)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: Tysabri is for relapsing forms of MS, which include Relapsing/Remitting (RRMS), Progressive Relapsing (PRMS), and Secondary Progressive WITH relapses (SPMS)..., all three forms listed above are in the inflammation stage of MS. And because Tysabri works by blocking a majority of inflammation T cells from crossing the Blood Brain Barrier and entering our CNS where they could have destroyed more myelin, to date, Tysabri is only available for relapsing forms of MS. There is no current data supporting Tysabri therapy for Primary Progressive (PPMS) and Secondary Progressive WITHOUT relapses as these two forms of MS are in the demyelinating stage of the disease, not the inflammation stage of MS.
  • 6 helpful marks

May 3, 2012 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: Course of treatment was ended by Neuro due to associated risks and that my MS had stabilised with no new scars/lesions and no active ones. I have to wait 3 months before starting next treatment (Gilenya) to ensure any side effects are isolated to the drug I am taking.
Cost: < $25 monthly

Mar 30, 2012 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Mar 6, 2012 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Feb 2, 2012 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: Had another MRI with GAD in January and after visiting the neuro - all lesions have been stopped dead in their tracks. No new lesions! No active lesions! So he decided that I should continue for another six months before getting off it for three months and then starting Gilenya.
Cost: < $25 monthly

Jan 5, 2012 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Dec 8, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Nov 10, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Oct 13, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Sep 9, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Aug 4, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Jul 7, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Advice & Tips: This treatment has certainly stabilized the MS, I have not had any attacks since I started taking it. My vision has been improving but still susceptible to Uthoff's Phenomenon.
Cost: < $25 monthly

Jun 7, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

May 6, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Apr 7, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly

Mar 10, 2011 (Started Mar 10, 2011)

  • Effectiveness
    Can't tell (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL every 4 weeks
Cost: < $25 monthly
  • 4 helpful marks

May 17, 2011 (Started Aug 31, 2008)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    Mild (for Overall) (lethargy)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: For people who have been advised that their symptoms to not warrant the risks associated with Tysabri, I would encourage them to expect more from their MS treatment. I have not had any worsening of my symptoms since starting the drug 2 1/2 years ago, and gained back some of my energy! I started taking it due to adverse reactions to my prior medication, not because my symptoms were uncontrolled. I am so glad I made the switch and that my Dr. was behind it. I don't believe that I have to be struggling with this disease day to day or have an expectation that it will get worse. When I meet other people with MS who say they aren't "bad enough" to go on Tysabri, it really bothers me b/c my personal goal is to be as symptom free as possible. If you can't work due to your illness, struggle to do normal physical activities, or take a ton of other medication to lessen your symptoms, I think you should consider another form of treatment!
Side effects: lethargy
  • 4 helpful marks

Jul 25, 2011 (Started Dec 01, 2007)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: I have been on Tysabri for several years now and I am totally happy with my therapy. I did have to get a port last summer, however it makes my infusions so much easier! It is working well for me.
Cost: $200+ monthly

May 18, 2009 (Started Dec 01, 2007)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: The expense is my only complaint. I have pretty good insurance and it's still expensive for me. I have friends who don't pay quite as much though???
Cost: $100-199 monthly
  • 3 helpful marks

Oct 18, 2011 (Started Feb 09, 2007)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    Severe (for Overall) (pancreatitis, elevated liver enzymes, affected pancreas, liver)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Cost: < $25 monthly

Jan 16, 2009 (Started Feb 09, 2007)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: Give it time, and refrain from taking a lot of other prescribed drugs for pain issues, or over-the-counter treatments for other MS-related physical problems. I believe the purity of the the Tysabri should be kept intact so as not to affect the potency and effectiveness of this treatment. A positive mental attitude and the desire to overcome this illness couldn't hurt, either. I will overcome.
Cost: < $25 monthly

Aug 19, 2008 (Started Feb 09, 2007)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: No more cane, a lot less pain!
Cost: < $25 monthly

Aug 18, 2008 (Started Feb 09, 2007)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: Your Immune system needs to be typically too large to be on Tysabri, as it reduces your immune system towards the normal spectrum.
Cost: < $25 monthly
  • 3 helpful marks

Jun 16, 2012 (Started Aug 15, 2008)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: I just received my 39th infusion on 6/13 (my 35th birthday) and I'm still going strong. Tysabri is still currently the best and most aggressive treatment available for me. The impact is small, only once per month for 2 hours and I love my nurse so that helps a lot. Some unexpected benefits would be that I am still doing great up to this point. I have a new neurologist as of October 2011 and she does not advise drug holidays. Her proposed approach is to consider getting infused every 8 weeks instead of every 4 weeks which equates to every other month and cuts my infusions in half to 6 per year instead of 12. This is an attempt to avoid the most dangerous side effect PML. The longer you take Tysabri, the greater your risk for developing PML if you are positive for the JC Virus which I am. For details about this, see my blog at http://didimentionmyms.blogspot.com/. 04/11/14-Today I am receiving my 62nd Tysabri infusion and I'm still going strong and relapse free, thank you Jesus!!
Cost: < $25 monthly
Side effects: dry mouth, dry eyes, headaches, fear of PML

May 23, 2011 (Started Aug 15, 2008)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: I love Tysabri. I take drug holidays to give my immune system time to bounce back per doctor advice. I seriously recommend Tysabri for anyone whose disease is on the agressive side but has a decent and strong immune system since it is very aggressive. It works for me and really adds to my quality of life.
Cost: < $25 monthly
Side effects: dry mouth, dry eyes, headaches, fear of PML

Jan 9, 2010 (Started Aug 15, 2008)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    Mild (for Overall) (headaches, fear of PML)
  • Adherence
    Always
  • Burden
    A little hard to take
Cost: < $25 monthly
Side effects: dry mouth, dry eyes, headaches, fear of PML

Nov 18, 2009 (Started Aug 15, 2008)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    Mild (for Overall) (headaches, fear of PML)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: I was on Tysabri for 18 months, now I plan to take a "drug holiday" for 6 months per doc's advice. My experience with Tysabri has been mainly positive. I hope and pray that I do well for the next 6 months. Before Tysabri, my lesions were multiplying at a fast pace. It was crazy.
Cost: < $25 monthly
Side effects: dry mouth, dry eyes, headaches, fear of PML
  • 3 helpful marks

Dec 18, 2013 (Started Sep 10, 2008)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Every 6 Weeks
Advice & Tips: ON 12/18/2013, I WENT ON A 7 week schedule. MS got worse. Went back to 6 weeks on 5/2/2014
Cost: < $25 monthly
Side effects: breast cancer recurrence on Tysabri

Nov 20, 2011 (Started Sep 10, 2008)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Every 6 Weeks
Advice & Tips: heLps with SPMS
Cost: < $25 monthly
Side effects: breast cancer recurrence on Tysabri

Jun 11, 2010 (Started Sep 10, 2008)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Every 6 Weeks
Advice & Tips: I started Tysabri to stop the progression of MS, Secondary Progressive, and becoming inexhorably worse over time. I was effectively diagnosed with MS in 1982. Starting Tysabri in 2008, 26 years into MS, was a last-ditch effort. Even though Tysabri is targeted at RR, one might as well throw anything one can at it (all of my neuros use this approach.) I was going down hill. I started Tysabri using 4 week intervals between infusions. After two months, an old cellulitis infection returned, and I just did not feel "well" - like I was always coming down with something. I changed to Tysabri every 4 weeks, and had no further problems. Cipro for about 5-6 weeks cured the cellulitis infection. Although I started Tysabri to stop the progression of MS, I was surprised to find that some neurological function, gone for some 10 to 20 years, returned. Oh, it was minor and subtle, but ientifyable. For example, my "bad" left hand got a little stronger and I could move my fingers better. In my right hand, my stronger, normal hand, the ability to feel vibrations, long gone, returned a little. I can now feel vibrations in that hand, not as strongly as in the left hnd, but discernable. My QOL has improved 100% on Tysabri. Tysabri slowed, but did not stop the MS progression. earlier this year, I did get a little worse - bad left leg is weaker and clonus is much more of a problem. However, Tysabri has helped, overall. I have a personal neuro (a woman) who prescribed Tysabri, and a Tysabri neuro (insurance hoops). My Tysabri neuro, who tightened up his department's Tysabri protocol insisted that he take over issuing my prescription. I saw him for the first time in April 2010. He started to make noises about Tysabri being for RR, etc. He concluded that I was SP. He then saw the data on how well I had done on Tysabri and he kept quiet. He was also mollified when he saw that I took Tysabri every 6 weeks, not every 4. However, if he will not continue to prescribe my Tysabri, I will go somewhere else!!!!!!!
Cost: < $25 monthly
Side effects: breast cancer recurrence on Tysabri

Jun 10, 2010 (Started Sep 10, 2008)

  • Effectiveness
    Moderate (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Every 6 Weeks
Advice & Tips: MORE EFFECTIVE FOR AFRICAN AMERICANS THAN THE BETA INTERFERONS
Side effects: breast cancer recurrence on Tysabri
  • 3 helpful marks

Jul 20, 2010 (Started Nov 02, 2009)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    Mild (for Overall) (tiredness, fear of PML, mood changes)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
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 ALIVE AGAIN AND NOT AS NERVOUS TO TAKE CHANCES TO DO THINGS. I KNOW I AM NOT "CURED" BUT EVEN FEEL SOME WHAT BETTER IS AND HAS BEEN SO WORTH THE WAY I FEEL.
Side effects: tiredness, fear of PML, mood changes

Nov 2, 2009 (Started Nov 02, 2009)

  • Effectiveness
    Can't tell (for multiple sclerosis)
  • Side effects
    Moderate (for Overall) (tiredness, fear of PML, mood changes)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg/15 mL Monthly
Advice & Tips: We don't know unless we try things. There are side effects to even taking an asprin so it all comes down to choice of the person.
Side effects: tiredness, fear of PML, mood changes
  • 3 helpful marks

Aug 20, 2010 (Started Oct 15, 2008)

  • Effectiveness
    None (for multiple sclerosis)
  • Side effects
    Severe (for Overall) (generalized weakness (asthenia), excessive daytime sleepiness (somnolence), brain fog, losing train of thought, loss of short term memory, addiction, vision problem due to fatigue heat and stress, difficulty staying asleep)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Make sure that you have taken the new test to see if you have a chance of getting pml. I have been sick since October of 2009 with severe side effects if Tysabri. I had twenty four monthly treatments and shoul have had no more than 20 without a 6 month "vacation". From October through june of 2010 I spend most of every day in bed. I virtually have no memory of the eight months and was offered no assisatnce from Biogen or their partners it was as if I did not exist. every morning I awoke I felt blessed by GOD. I know that God healed me from the severe effects of Tysabri.
Cost: $200+ monthly
Side effects: difficulty staying asleep, addiction, vision problem due to fatigue heat and stress, excessive daytime sleepiness (somnolence), brain fog, losing train of thought, generalized weakness (asthenia), loss of short term memory

Jan 11, 2010 (Started Oct 15, 2008)

  • Effectiveness
    Major (for multiple sclerosis)
  • Side effects
    Severe (for Overall) (generalized weakness (asthenia), excessive daytime sleepiness (somnolence), brain fog, losing train of thought, loss of short term memory, addiction, vision problem due to fatigue heat and stress, difficulty staying asleep)
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: The treatment was effective for the first 23 monthly treatments. However the treatments have lost their effectiveness. I now have every side effect attributed to PML. I would not recommend this treatment side effects to dangerous to consider and fatal.I am still alive but been extremely sick since October of 3009, I understand a tet will soon be available that will tell if you can take Tysabri by testine for the antigens. positive test dont take negative test ok.
Cost: $200+ monthly
Side effects: difficulty staying asleep, addiction, vision problem due to fatigue heat and stress, excessive daytime sleepiness (somnolence), brain fog, losing train of thought, generalized weakness (asthenia), loss of short term memory
  • 3 helpful marks

Aug 18, 2008 (Started Aug 12, 2008)

  • Effectiveness
    Can't tell (for multiple sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg Monthly
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 next infusion next month. August '08 was my first infusion and I was happy with the TOUCH program. Was a very relaxing experience.
  • 2 helpful marks
Last updated:
Showing 10 of 108 patient evaluations for Natalizumab