education, events, medication, ms, multiple sclerosis, treatment
Several weeks ago W and I attended an MS dinner program in Charlotte. It was put on by MS News and Views and instead of being sponsored by a single drug company, it was sponsored by several which means that the information provided to us was largely unbiased. There were two presenters: Jessica Thomas, a social worker and MS advocate who spoke about MS and its impact on the family and Dr. Jeffrey, an MS Specialist in the area who spoke about emerging therapies.
My major takeaways from Dr. Jeffrey’s talk:
- Although there are an estimated 400,000 people in the US with MS, those numbers are based on 1994 data and the true number is likely much higher
- MS is the leading cause of disability in young people in the US today
- the etiology is unknown – it is guessed to be auto-immune or may be triggered by a virus in individuals with appropriate genetic susceptibility
- It was thought that Epstein Barr Virus may be the culprit; however, it has not be found in the brains of patients who dies from MS complications
- When MRIs are completed with contrast dye (gadolinium), the dye is picked up into areas of active inflammation
- “Silent explosions” are lesions that are shown as enhancing lesions on MRI that may not be physically noticeable (no symptoms), but over time will lead to cognitive decline
- There is typically a pre-clinical phase when patients experience silent explosions and patients generally do not feel good (this definitely happened to me)
- For every non silent attack (spinal cord lesions or optic neuritis for example), there are typically 5-10 new silent lesions
- In absence of treatment, Relapsing Remitting MS transitions to Secondary Progressive in 50% of cases and typical time to walking with a cane is 15 years (average)
- The goal of treatment is to keep the lesion load to zero because you don’t want a lesion to hit at a strategic location (one spinal lesion can equal a wheelchair)
- Ocrelizumab/Ofatumumab – Should be FDA approved in 2016. Humanized form of Rituxan/Rituximab (monoclonal antibody) with positive outcomes in clinical trials. 80% decrease in relapse rate at 6 months and a 97% decrease in gadolinium enhancing lesions. In a two year time period, only 2 of 200 patients had new lesions.
For those who are interested, the entire program was video taped and it is available online for viewing in two parts. The first presentation below is Dr. Jeffrey’s talk followed by the Q&A. For those who are evaluating MS treatments, I would highly recommend watching it. His presentation goes through each of the newer medications in detail and he introduces several new drugs that are coming to market. Of particular interest to me, Dr. Jeffrey talked about Rituxan (Rituximab) briefly – the drug that I am on. You can hear that portion if you skip ahead to 1:10 or so and around 1:14 I ask about switching from Rituxan to one of the new medications in 2016.
The second video is Jessica’s talk about MS and the family. Although we don’t have children and are not planning to have any, I think her talk would be hugely helpful for anyone who has MS and has/is around small children. I appreciate many of her comments about adjusting to the disease.
If you have MS (or any chronic illness for that matter), I would suggest seeking education events like this one that is not sponsored by any individual drug company. Unless you are specifically interested in the drug being promoted, this type of event will offer a much better, more balanced learning experience.