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Natalizumab Treatment Report

Category: Prescription Drugs

Most Popular Types: Tysabri, Antegren

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46 patient evaluations for Natalizumab taken for the purpose of 'MS (Multiple Sclerosis)' with a side effects rating of NoneNoneNoneNoneNone

  • CaineMan
    Sex: M
    Data Quality: 2 stars
    MS: 8 yrs
    Type: Relapsing-Remitting
    Sensation: Moderate
    Overall: Moderate
    Cognition: moderate
    Vision: moderate
    Speech: moderate
    Swallowing: moderate
    Upper limb: moderate
    Walking: moderate
  • 13282-thumb
  • See CaineMan's full Natalizumab history
Purpose: MS (Multiple Sclerosis) (Started Aug 27, 2012)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Dec 15, 2012 300 mg/15 mL every 4 weeks Led_efficacy_1Led_defaultLed_defaultLed_defaultNone NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways SomewhatSomewhatSomewhatSomewhatSomewhat
  • Icon_thumb_off 0 helpful marks
  • Jazz1982
    Sex: F
    Data Quality: 2 stars
    MS: 6 yrs
    Type: Relapsing-Remitting
    Sensation: None
    Overall: None
    Cognition: none
    Vision: none
    Speech: none
    Swallowing: none
    Upper limb: none
    Walking: none
  • 44931-thumb
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Purpose: MS (Multiple Sclerosis) (Started Oct 18, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Nov 14, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 23, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jul 23, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 26, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
May 16, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Apr 15, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Mar 16, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Feb 13, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 11, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Dec 15, 2011 300 mg/15 mL Monthly Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 10, 2011 300 mg/15 mL Monthly ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
Nov 14, 2012
Advice & Tips
Today I have no MS symptoms :D
Date
Aug 23, 2012
Advice & Tips
The pain is just getting worse from yesterday.
Date
Jul 23, 2012
Advice & Tips
Make the drip slower so instead of taking 1 hour, let it take 1.5 or more hours and for me, I got no side effects at all :)
Date
Jun 26, 2012
Advice & Tips
Quality of life gets better every month. Every time I think, no way can this month be topped, it gets hit on the head and high kicked to the side from how exponentially significant the change is :)
Date
May 16, 2012
Advice & Tips
I had to go in after 5 weeks due to an UTI so I was on antibiotics and that's the protocol here in Sweden. What I noticed was my body was still comfy and functioning normally, what seemed to make a difference was the speed of infusion rate. It was slower than usual and voila! Not a single side effect. Will try it again next month and see if this theory holds up.
Date
Apr 15, 2012
Advice & Tips
If you have low bp, load up on the sodium.
Date
Mar 16, 2012
Advice & Tips
It's a miracle drug.
Date
Feb 13, 2012
Advice & Tips
Clear head and loads of energy
Date
Jan 11, 2012
Advice & Tips
Energy and a big difference in mood towards the positive.
Date
Dec 15, 2011
Advice & Tips
I had a difficult 2 days after therapy the first 2 infusions, as in I would feel tired, some lower back pain. the 3rd infusion felt as if I had not taken anything at all and i cud go about my day normally, such a relief!
  • Icon_thumb_on 4 helpful marks
  • melippa
    Sex: F
    Data Quality: 3 stars
    MS: 11 yrs
    Type: Relapsing-Remitting
    Sensation: Mild
    Overall: None
    Cognition: mild
    Vision: none
    Speech: none
    Swallowing: none
    Upper limb: mild
    Walking: mild
  • Portrait_default_thumb
  • See melippa's full Natalizumab history
Purpose: MS (Multiple Sclerosis) (Started Nov 15, 2006)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jun 19, 2012 300 mg/15 mL Every 6 Weeks Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
  • Icon_thumb_off 0 helpful marks
  • baebae
    Sex: F
    Data Quality: 2 stars
    MS: 6 yrs
    Type: Relapsing-Remitting
    Relapse: Moderate
    Sensation: Moderate
    Overall: Mild
    Cognition: moderate
    Vision: mild
    Speech: mild
    Swallowing: mild
    Upper limb: mild
    Walking: mild
  • 2510-thumb
  • See baebae's full Natalizumab history
Purpose: MS (Multiple Sclerosis) (Started Aug 15, 2008)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jun 16, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
May 23, 2011   Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 09, 2010   Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Nov 18, 2009 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Side effects:
Dry mouth (xerostomia), Dry eyes, Headaches, Fear of PML
Date
Jun 16, 2012
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/.
Cost
< $25 monthly
Date
May 23, 2011
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
Date
Nov 18, 2009
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
  • Icon_thumb_on 3 helpful marks
  • msladyinca
    Sex: F
    Data Quality: 2 stars
    MS: 38 yrs
    Mentor
    Type: Secondary Progressive
    Sensation: None
    Overall: Mild
    Cognition: none
    Vision: none
    Speech: none
    Swallowing: none
    Upper limb: moderate
    Walking: severe
  • 908-thumb
  • See msladyinca's full Natalizumab history
Purposes: MS (Multiple Sclerosis) and To prevent further relapses and slow the disease process down (Started Oct 16, 2006)
Date Dosage MS (Multiple Sclerosis) Perceived effectiveness To prevent further relapses and slow the disease process down Perceived effectiveness Side Effects Adherence Burden
May 09, 2012 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 28, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 03, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jul 06, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
May 15, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Apr 15, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Mar 15, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Feb 15, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 15, 2010 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Dec 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Oct 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jul 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
May 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Apr 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Mar 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Feb 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 15, 2009 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Dec 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Oct 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jul 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
May 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Apr 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Mar 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Feb 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 15, 2008 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Dec 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Oct 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jul 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
May 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Apr 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Mar 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Feb 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 15, 2007 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Dec 15, 2006 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 15, 2006 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Oct 16, 2006 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
May 09, 2012
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.
Date
Sep 28, 2010
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.
Date
Aug 03, 2010
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.
Date
Jul 06, 2010
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?
Date
Nov 15, 2006
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.
Date
Oct 16, 2006
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.
  • Icon_thumb_on 6 helpful marks
  • Mikhali
    Sex: M
    Data Quality: 2 stars
    MS: 4 yrs
    Type: Relapsing-Remitting
    Sensation: Moderate
    Overall: Mild
    Cognition: moderate
    Vision: moderate
    Speech: mild
    Swallowing: mild
    Upper limb: mild
    Walking: moderate
  • 29088-thumb
  • See Mikhali's full Natalizumab history
Purpose: MS (Multiple Sclerosis) (Started Mar 10, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
May 03, 2012 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Mar 30, 2012 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Mar 06, 2012 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Feb 02, 2012 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Jan 05, 2012 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Dec 08, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Nov 10, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Oct 13, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Sep 09, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Aug 04, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Jul 07, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Jun 07, 2011 300 mg/15 mL every 4 weeks Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
May 06, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Apr 07, 2011 300 mg/15 mL every 4 weeks Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Mar 10, 2011 300 mg/15 mL every 4 weeks ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Date
May 03, 2012
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
Date
Feb 02, 2012
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
Date
Jul 07, 2011
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
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  • loisa
    Sex: F
    Data Quality: 2 stars
    MS: 20 yrs
    Type: Relapsing-Remitting
    Sensation: Mild
    Overall: None
    Cognition: mild
    Vision: none
    Speech: none
    Swallowing: none
    Upper limb: none
    Walking: none
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Purpose: MS (Multiple Sclerosis) (Started Mar 07, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Apr 05, 2012 300 mg/15 mL Monthly Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Date
Apr 05, 2012
Advice & Tips
extremaly good in controling my MS bless God it is still relapse remitting, because the treatments are working despite I have symptoms for 20 years...
Cost
< $25 monthly
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  • ciachef
    Sex: M
    Data Quality: 2 stars
    MS: 10 yrs
    Type: Relapsing-Remitting
    Sensation: Moderate
    Overall: Moderate
    Cognition: moderate
    Vision: moderate
    Speech: moderate
    Swallowing: moderate
    Upper limb: moderate
    Walking: moderate
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Purpose: MS (Multiple Sclerosis) (Started Nov 02, 2009)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Mar 22, 2012   Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways SomewhatSomewhatSomewhatSomewhatSomewhat
Date
Mar 22, 2012
Advice & Tips
I really hated coming off of this drug. Some of my MRI's actually showed repair to my system. In the end the risk of PML got to be too great and I had to stop, but man, what a great treatment.
Cost
< $25 monthly
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Purpose: MS (Multiple Sclerosis) (Started Sep 10, 2008)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Nov 20, 2011 300 mg/15 mL Every 6 Weeks Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 11, 2010 300 mg/15 mL Every 6 Weeks Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 10, 2010 300 mg/15 mL Every 6 Weeks Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Side effects:
Breast Cancer recurrence on Tysabri
Date
Nov 20, 2011
Advice & Tips
heLps with SPMS
Cost
< $25 monthly
Date
Jun 11, 2010
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
Date
Jun 10, 2010
Advice & Tips
MORE EFFECTIVE FOR AFRICAN AMERICANS THAN THE BETA INTERFERONS
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  • arkk
    Sex: M
    Data Quality: 1 star
    MS: 26 yrs
    Type: Progressive Relapsing
    Sensation: Mild
    Overall: Mild
    Cognition: moderate
    Vision: none
    Speech: none
    Swallowing: moderate
    Upper limb: moderate
    Walking: moderate
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Purposes: Other and MS (Multiple Sclerosis) (Started Oct 27, 2008)
Date Dosage Other Perceived effectiveness MS (Multiple Sclerosis) Perceived effectiveness Side Effects Adherence Burden
Oct 19, 2011 300 mg/15 mL Monthly Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 15, 2011 300 mg/15 mL Monthly Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone NeverNeverNeverNeverNever Not at allNot at allNot at allNot at allNot at all
Jan 17, 2009 300 mg/15 mL Monthly ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Side effects:
Headaches, Head pain, Fear of PML
Date
Jan 17, 2009
Advice & Tips
PML concerns..
Cost
< $25 monthly
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