msladyinca
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msladyinca
Sex: F
Data Quality: 2 stars
Sensation: None
Overall: Mild
Cognition: none
Vision: none
Speech: none
Swallowing: none
Upper limb: moderate
Walking: severe
I am: g
I have:
MS

See msladyinca's full Natalizumab history

May 9, 2012 (Started Oct 16, 2006)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2010 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2010 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2010 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2010 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Oct 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Sep 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Aug 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jul 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jun 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

May 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2009 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Oct 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Sep 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Aug 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jul 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jun 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

May 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2008 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Oct 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Sep 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Aug 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jul 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jun 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

May 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Apr 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Mar 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Feb 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Jan 15, 2007 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Dec 15, 2006 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg/15 mL every 4 weeks

Nov 15, 2006 (Started Oct 16, 2006)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for To prevent further relapses and slow the disease process down: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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.

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