I intend this blog to be a mixture of my personal experiences with Multiple Sclerosis (MS) and news related to MS. Hopefully, I can shed an optimistic light on MS even though it is difficult to be an optimist living with MS.

Thursday, February 17, 2011

Teleconference Update

Ok, so I didn't listen to the teleconference last night (wasn't up for it).  Luckily, they are replaying it tonight - I will listen to it tonight and report back.  In the meantime, here is what I learned from the 2/14/11 Teleconference.

1.  Despite being called Relapsing Remitting MS, studies have shown that there is no true remission in MS (no matter which type of MS you have).  MRIs of MS patients show that even when you do not have symptoms (relapses/attacks), lesions are still forming and inflammation is still occurring.

2.  CCSVI:  White blood cell inflammation is secondary to a lack of blood drainage due to a narrowing or twisting of the vein in the neck - this is why there is some correlation between MS & CCSVI.  Roughly 60% of MS patients have this abnormality, suggesting that it may be a result of MS rather than a cause.

3.  ABCR (Avonez, Betaseron, Copaxone, and Rebif) drugs still do a good job, they are trusted and have been around for decades.

4.  Tysabri:  PML occurrence is about 1 in 1000.  Tysabri should be used for people with failures on or an intolerance to the ABCR drugs.

5.  Gilenya (new oral med):  Traps white blood cells in lymph nodes so they can't go into the brain; studies show that it reduces exacerbation rate by 53-55%.  It is more effective than ABCR drugs, but less effective than Tysabri.  Downside is that you must be monitored for the first 6 hours after taking your first dose due to a possible cardiac episode.  Other negatives are: possible swelling in the back of the eyes, fatal herpes brain infections (occurred more in higher doses & should not occur if you have had chicken pox because chicken pox is similar form of that particular herpes virus and if you had the chicken pox then you should be immune), and possible fertility issues (no way of knowing at this point how it affects fertility - may affect negatively; Dr. Mattson said that, for this reason, he would never recommend Gilenya to a young woman who wishes to start a family).

6.  Cladribine (new oral med on the horizon):  used currently with chemo for lymphoma.  It wipes out white blood cells (this means you are more susceptible to illness).  Studies have shown a 54-57% reduction in exacerbation rate.  Downsides: increased risk of infection (including shingles), can't get the white blood cells back once they've been wiped out with Cladribine, and may increase the risk of skin cancer.  Also, for some reason, Europe's FDA-equivalent has rejected Cladribine (so it is clear that they saw something that they didn't like).

7.  Future Therapies:  Loquinimod (currently in phase 3), Teriflunamide (currently in phase 3), BG-12 (currently in phase 2), and Estriol (currently in phase 2).  No other information was given about these four therapies, so I will do some research and report back.  Campath: consists of 5 infusions per year, has had an impressive phase 3, studies showing that it is 75% better than Rebif.  Rituximab is anti-B white blood cells and consists of infusions every 6 months; studies showing 50% reduction in exacerbation rate.  Vaccination Strategies (essentially allergy shots - there are theories that MS is like an allergic reaction) include Tovaxin and Apitope; these essentially desensitize the brain attack.  I know this may not make a whole lot of sense, but this is what Dr. Mattson discussed.  As I said before, there was not enough time for him to really delve into any one topic/therapy.  I will look into each of these further and post more information later.

8.  Vitamin D: studies have shown a correlation between MS and a Vitamin D deficiency.  Studies show that Vitamin D decreases incidence by 40% (this is not backed by any clinical trial).  We do know that MS patients tend to have low levels of Vitamin D, so Dr. Mattson suggested that a multivitamin with 400 IUs of Vitamin D cannot hurt.  He also mentioned that some researchers/doctors feel that 1000 or 2000 IUs may be appropriate (but too much can be a bad thing; can cause kidney stones).

9.  Walking Pill (Ampyra):  works by improving electrical transmissions through damaged nerve wires.  To be used for improving walking speed (30-40% of people respond to the medication and it takes about 1-2 months to determine if you are responding).  Studies have shown that it may also help with arm functioning, fatigue and stamina, but this is all unproven.  Downside: can cause seizures.

That is it (I am a little disappointed that I wasn't able to end up with 10 points, but oh well).  Again, I will do some further research on the up and coming therapies and report back about what I learn.  I will also listen to the Shared Solutions' Latest Updates teleconference tonight and let you know what I learn from that.

Hopefully, this was, at least, a little informative!  I'd love to hear your thoughts on all, or any, of this.

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