February 3, 2007 Newsletter
Yes, no, yes, no …what to do, what to do. Thanks to Todd Provence from Rebif, Dr. Andrew Woo, Santa Monica Neurology Consultant and Clinical Assistant Professor at UCLA, was our guest speaker offering his insight on MS.
It seems that most Neurologists have conflicting opinions about whether to take or stay on existing therapies. Dr. Woo strongly believes in getting on an injectible therapy and if you have done well with it to stay the course. Not all lesions show up on MRI scans which doesn’t mean that they don’t exist, only that current technology cannot penetrate all of the brain layers to reveal it’s secrets. Many people show no new brain activity yet continue to progress which concludes that MS is still active and current therapies have research to support that they slow progression nonetheless.
He gave us a handout illustrating diagnostic tests, prognosis, symptoms, factors, clinical types, possible pathogenesis and current treatments available for varying symptoms. Among his highlights are Reasons to Consider Injectable Medications for Prevention of MS:
1) MS is likely to have at least some progression, even if you feel fine and have no symptoms now.
2) Prognosis: people may need some sort of walking assistive device by 28 years after diagnosis.
3) New pathologic studies show not only demyelination of nerves, but also “Axonal Transection”, the wiring itself is affected, not just the myelin covering; this is irreversible.
4) There is proven brain atrophy (shrinkage) over 2 years, found by volumetric MRI studies if untreated; this may have no symptoms at all.
5) Up to 40-50% of MS patients may get cognitive changes that can be helped by injectable medications.
6) CHAMPS, ETOMS, BENEFIT studies: After one clinical event + some spots on the MRI, treatment can delay the onset of MS.
7) Even patients with Secondary Progressive MS get benefit from treatment.
8) Treatment with one of four injectable medications has been the standard of care recommended by the American Academy of Neurology and National MS Society since 1999
The injectable immunotherapies for reduce attack rate are: Betaseron (4 times/wk), Avonex (once weekly), Copaxone (daily), Rebif (3 times/wk). Novantrone for Secondary Progressive only (DNA intercalating Chemotherapy has a lifetime limit) Tysabri (once monthly infusion), Acthar Gel for acute attacks with the same efficacy as Prednisone but can be self administered.
As can be seen, strides are being made as well as many new future treatments. Again, every individual has different needs that can best be decided by your neurologist and you. Dr. Woo also discussed a compounded drug called 4-AP which is used for leg spasticity, heat sensitivity and improved nerve conduction.
In light of all of this heavy drug talk, Dr. Woo’s slide presentation included a humorous look at MS and actually had us laughing out loud often.
Towards the end of the meeting we drew a name from our brain teaser winners and Sally Rossiter won a $25 gift certificate to Country Entrees. By the way, the answer was “noon”.
Stay tuned for our next brain teaser to be awarded at our next meeting Saturday, March 3rd. Also, watch for the questionaire in your mail box requesting your opinions on future events for HOPE 4 MS.
Until next time,
Patricia & Beth
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