Written by: Stuart Schlossman-RRMS
Each week I receive questions from many with MS or others affected by MS (caregivers, family or friends). Earlier this week I received the following question, followed by my reply and then a reply from a well known local (in South Florida) MS Neurologist.
Question:
I have been using Tysabri for almost a year and do not know if it has been working for me. Stuart, have you heard this from others and do you know if I can safely stop using it?
Di - in Nebraska
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My reply:
I told Di that I would have to ask a medical professional. I also asked her if she spoke with her neuro and she said that she had, but did not like his response.
So, this led me to ask myself also How a patient is weaned off of Tysabri?
IS there an answer?
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And the Doctors' Reply:
Your response is correct...a question like this should be addressed to their personal physician. If the person is unhappy they should seek a second opinion.
But, in general, the effects of Tysabri will wear off after 3-4 months, at which time the disease may become more active. So if the person is convinced the med. is ineffective they could stop but should have alternative plans in place. How do they know it is not working?
Are they having relapses, is there disease progression or is the MRI worse.
Finally, if these items are borderline Tysabri antibodies could be checked. If present they do reduce efficacy, and may contribute to the overall decision.
-- Dr. S.
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3 comments:
I can only speak from my personal experience, but I haven't had any exacerbations after going off Tysabri. My last dose was this past May and I've been off it for six months now. I had an MRI done earlier this month and it showed no new activity! I'm quite pleased.
Now, I will say I started a new treatment in the iterim: low dose naltrexone (LDN). My neurologist put me on it after I asked her about it. I have had excellent results. It's not an FDA-approved medication for MS. If others are interested, please visit http://www.ldners.org/ or http://www.ldninfo.org.
Sherri
I need to quibble with the first statement from the medical person - "The effects of Tysabri will wear off after 4 months". ?? Perhaps he or she meant "IF the effects of Tysabri wear off after 3 or 4 months, then.."
It doesn't wear off for everyone. I was on it for two years with zero progression and zero new plaques on the MRI.
Like Sherri, I'm hoping to go with LDN as my next treatment of choice.
I also can only speak from personal experience, but i was recently abruptly withdrawn from my Tysabri due to problems with insurance coverage, and with 3 weeks i could feel the difference. My legs were more painful, my daughter commented to me about having to pick up my feet when i walk and getting me 'walking sticks' to go for a walk with her. But for me, the medication was definately working. Within 2 months, i was able to stand on one foot for the first time in 15 years, and now i can do a perfectly beautiful 'stork stand' which is the way to show that you can stand on one foor, according to my 6 yr old duaghter. i received my dose of Tysabri today, courtesy of TCP, and by the time i finished the infusion, my legs felt better and i had more energy. i can't praise the effects of this drug enough
Deborah
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