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.

Monday, February 28, 2011

More on Future Therapies (Campath and Rituximab)

Campath is a drug currently used for the treatment leukemia.  Genzyme Corp., the makers of Campath are currently testing the drug, known as Lemtrada for MS, for use in the treatment of MS. 

Excerpts from a Bloomberg article:
Lemtrada is given once a year as an infusion. Patients get five doses over five days. More than 70 percent of patients with early disease given the drug in a study had no relapses or progression of disability for four years, compared with 35 percent of those given [] Rebif.
Side effects included infections in 72 percent of patients, thyroid complications and cancers. Most infections were in the respiratory or urinary tracts and cleared with treatment.
Lemtrada is in the third and final stage of tests generally needed for U.S. approval. Results from one of those tests, in patients without prior MS treatment, are expected mid-year, Genzyme said today in a statement. A second study of previously treated patients will be done by the end of 2011. Genzyme said it expects U.S. approval in the second half of next year.
While Lemtrada’s once-a-year treatment approach is convenient for doctors and patients, medical complications may go unnoticed and be difficult to treat. With daily pills, side effects may sometimes be eased by halting use. Genzyme’s medicine, by design, remains active in the body for a year.

Exciting initial results!  There is a possibility for serious side effects and, as with all new medications, there is no way to predict how it will affect a person ten years (or more) down the road.  Nice to know that all of this research is ongoing though!

Rituximab, administered by intravenous infusion, is a monoclonal antibody licensed to treat leukaemia and non-Hodgkins lymphoma.  It works by reducing the numbers of B-cells in the immune system. Most current treatments for MS interact with or deplete T-cells, so Rituximab provides a means for investigating the role of B-cells in the immunological changes in MS.  Side effects include progressive multifocal leukoencephalopathy (PML) and fatal infusion reactions, although these have not been reported in MS trials.  Rituximad is being studied for use in the treatment of relapsing-remitting MS; studies are also ongoing to see whether Rituximad would be a useful therapy in patients with primary progressive MS and secondary progressive MS.  Regarding the studies focused on RRMS, preliminary results show GdE lesions were reduced after treatment with Rituximab, with 74% of post-treatment MRI scans being free of GdE activity compared with 26% free of GdE activity at baseline.  Mean GdE lesions were reduced from 2.81 per month to 0.33 after treatment (88% reduction).

Next time I will discuss information about the use of Tovaxin and Apitope Vaccines as MS therapies.

Don't forget, tomorrow begins MS Awareness Month!!!  Thanks for reading!

Broken Promise

I know I promised that my next post would be more about future therapies, but I am going to break that promise right now (hence the post title).  There are a couple of things that I really need to tell you right now.

Number 1:  I played volleyball for the first time since my diagnosis and it went over very well!!!  This is very exciting for me!  I played volleyball in college and it has always been a passion of mine and a big part of my life.  From April to September last year, before I was diagnosed, I felt so off that I was unsure of my ability to be active (aside from walking and even that was difficult at times).  And since my diagnosis, I have experienced numbness in my feet and legs almost constantly which has made me feel a little uneasy about playing sports - I feared that I would twist an ankle or something but would be numb enough to not realize what had happened (may sounds silly, but that is how I felt).  Lately, however, I have been feeling pretty well, I still have some slight numbness and the L'Hermittes still bothers me, but overall I have been feeling better than I have since last April.  So, I was invited to sub in on a team and I felt up to the challenge, so I played and am happy to report that, while I am a little rusty on the court, I was able to play and the team I played with won!

Number 2:  If you download iTunes and/or shop online, you should really go through iGive.  I know I talked about this before in the "More Ways to Help" post, but I was looking at the site more and realized that iTunes is included in their "stores."  I think this is awesome because SO many people use iTunes.  I know quite a few people shop online these days too, but how easy would it be to go through iGive before buying a song.  It doesn't cost you anything and 2% of your purchase goes toward helping the National Multiple Sclerosis Society.  I realize that 2% of 99 cents isn't that much, but if 100 people buy 15 songs per month (at 99cents each) on iTunes, that would add up to over $350 per year.  Every little bit helps, so please consider using iGive for your iTunes purchases and other online shopping (they have a lot of great stores, including Amazon.com, Bloomingdale's, Crate & Barrel, DSW, eBay, Home Depot, J.Crew, Kodak Gallery, Kohl's, Macy's, Old Navy, Toys R Us, Victoria's Secret and much much more!).  To learn more, visit this website. Then start using iGive to benefit the NMSS!!!

Next post will be more on the Future Therapies (I won't break my promise again)!

Sunday, February 27, 2011

Future Therapies Continued (BG-12 & Estriol)

Unfortunately, I was unable to find much information on BG-12, but here is what I did find:
BG-12 is an experimental oral therapy in Phase III clinical development as a monotherapy for the treatment of relapsing-remitting multiple sclerosis (RRMS).  BG-12, bought by Biogen Idec, received Fast Track designation in MS from the U.S. Food and Drug Administration (FDA), which may expedite U.S. regulatory review.  BG-12 works by reducing the evolution of new enhancing lesions to T1-hypointense lesions in patients with multiple sclerosis.

From the Multiple Sclerosis Resource Centre's website:
BG-12, an immunomodulatory agent, reduces frequency of new gadolinium-enhancing (Gd+) lesions in relapsing multiple sclerosis (MS). This study reports the effect of 240 mg BG-12 orally three times daily (tid) for 24 weeks on the evolution of new Gd+ lesions to T1-hypointense lesions.
Eighteen patients receiving BG-12 and 38 patients receiving placebo were included in the analysis. The analysis tracked 147 new Gd+ lesions in patients from the BG-12 group and 221 Gd+ lesions in patients from the placebo group. The percentage of Gd+ lesions that evolved to T1-hypointense lesions was 34% lower with BG-12 treatment versus placebo.
In addition to reducing frequency of new Gd+ lesions, BG-12 significantly reduced probability of their evolution to T1-hypointense lesions in patients with MS compared with placebo.
Estriol is an estrogen hormone.  Studies are ongoing to determine whether higher levels of estriol, as naturally produced during pregnancy, may treat MS.  Refer back to my "Definitely Good News!" post for more information on pregnancy and MS.  According to research, Estriol production in MS patients during pregnancy reduces the disease's symptoms noticeably. 

From an article on Life Extension's website:
The high levels of estriol during pregnancy have been known to alleviate some autoimmune conditions due to its ability to shift immune response. For instance, Sicotte et al. at the Reed Neurological Research Center in Los Angeles investigated the effects of pregnancy-level doses of estriol (8 mg/day) in non-pregnant women with multiple sclerosis (MS). Cerebral MRI images showed a significant reduction of gadolinium-enhancing cerebral lesions from multiple sclerosis. These lesions increased when treatment stopped and decreased when treatment was restarted. Gadolinium is a contrast agent used in certain MRI studies; gadolinium-enhancing lesions are associated with an increased inflammatory response marking disease progression in patients with MS. Lowered amount of these lesions seen on MRI with gadolinium contrast would equate to a decrease in disease progression.
This effect may also apply to men with autoimmune conditions. Another team of researchers from the Reed Neurological Research Center in Los Angeles found that estriol treatment ameliorates experimental autoimmune encephalomyelitis (EAE) in males, compared with placebo treatment. EAE is an experimental demyelinating inflammatory disease that shares numerous characteristics with MS. Estriol treatment also resulted in a decrease of proinflammatory immune markers. This is very promising news for patients and their doctors who are struggling to treat challenging neurological conditions associated with inflammation. 
From an article on Medical News Today's website:
Trimesta (oral estriol) has previously completed an initial 22-month, single-agent, crossover Phase I/II clinical trial in the US for the treatment of MS in relapsing remitting patients, with highly encouraging results. The results showed the total volume and number of enhancing pathogenic myelin lesions (established neuroimaging measurements of disease activity in MS) decreased during the treatment period as compared to a six-month pretreatment baseline period. The median total enhancing lesion volumes decreased by 79 percent (p=0.02) and the number of lesions decreased by 82 percent (p=0.09) within the first three months of treatment with Trimesta. Following a six-month drug holiday during which the patients weren't on any drug therapies, Trimesta therapy was reinitiated during a four-month retreatment phase of this clinical trial. The relapsing-remitting MS patients again demonstrated a decrease in enhancing lesion volumes of 88 percent (p=0.008) and a decrease in the number of lesions by 48 percent (p=0.04) compared with original baseline scores (1),(2).
Some very promising research going on right now!  Very exciting stuff!  My next post will discuss Campath and Rituximab.  Then I will finish up the future therapies discussion with Vaccination Strategies.  Thanks for reading!

Friday, February 25, 2011

As Promised, Information on Future Therapies (Laquinimod & Teriflunomide)

I will begin by discussing Laquinimod, which is currently in Phase III studies.  It is an oral therapy introduced by Active Biotech and Teva.  It would be administered once daily.  It is being studied for treatment of autoimmune diseases, including MS, Crohn's disease and Lupus.  Studies seem to show that it is able to reduce MS activity on MRIs.   

From Active Biotech's website:
The Allegro study (assessment of oral laquinimod in preventing progression of multiple sclerosis), which is a global, pivotal, double-blind, Phase III study designed to evaluate the efficacy, safety and tolerability of laquinimod versus placebo in the treatment of RRMS, has been in progress since November 2007. The Allegro study was fully recruited in November 2008 encompassing 1,000 patients. The treatment administered is a 0.6 mg tablet of laquinimod once a day or placebo. The study is scheduled to continue for 24 months with the possibility to extend to 30 months.
A second pivotal Phase III study, Bravo (benefit-risk assessment of Avonex® and laquinimod), which is a global, multi-center, randomized, placebo-controlled 24 months study with parallel groups, was initiated in April 2008. The study will compare the effect of once-daily orally administered laquinimod 0.6 mg with placebo and also provide risk-benefit data in relation to treatment with a product presently established in the market and administered by injection (Avonex®). The Bravo study was fully recruited in June 2009 encompassing 1,200 patients.
This means that more than 2,000 patients are now participating in pivotal studies for this indication. The patients will be treated over a period of two years after which laquinimod's effect on disease progression will be determined. At the end of 2010, treatment of the final patient in the first Phase III study ("Allegro") will be complete.
Laquinimod received Fast Track designation from the U.S. Food and Drug Administration (FDA) in February 2009. Two global Phase III clinical studies, ALLEGRO and BRAVO, have completed enrollment and are currently ongoing, with results anticipated in [the first and third quarters of] 2011 respectively.
In September 2010, the results were presented of a 36-week active extension study evaluating two doses of laquinimod for the treatment of relapsing remitting multiple sclerosis (RRMS). The double-blind, multinational study demonstrated the sustained positive benefit/risk profile of laquinimod, which was shown to reduce Gd-enhancing (GdE) T1 lesions, while maintaining a good safety profile. These findings were published online by the journal Multiple Sclerosis.

The results of Phase II showed a 52% reduction of GdE T1 lesions.

One article, reported, "Laquinimod was safe and well-tolerated. The overall frequencies of adverse events were comparable to those observed in the placebo group. No deaths were reported in laquinimod-treated patients. Overall incidence of infections was similar between the two arms of the trial."

Next, some information on Teriflunomide, which is being developed by sanofi-aventis.  It works by inhibiting rapidly dividing cells, including activated T cells, which are thought to drive the disease process in MS. Teriflunomide may decrease the risk of infections compared to chemotherapy-like drugs because of its more-limited effects on the immune system.

From a Medscape article:
Results of a phase 3 trial of teriflunomide, an oral disease-modifying therapy, showed a significant reduction in annualized multiple sclerosis (MS) relapse rates with 2 doses of the drug of more than 30% vs placebo.
Disability progression was also significantly reduced by 30% with the higher 14-mg dose, and both doses were well tolerated, with a similar number of patients reporting treatment-emergent adverse events, including serious adverse events, in the treatment and placebo arms.
"Certainly it's safe and effective and is a potential new oral monotherapy for MS with relapses and, again, potentially a first-line treatment given its combination of efficacy and safety characteristics," Paul O'Connor, MD, director of the MS Clinic at St. Michael's Hospital, Toronto, Ontario, Canada, and principal investigator of the TEMSO study told delegates here.
Side effects that were more common in the teriflunomide groups were diarrhea, nausea, alanine transferase increases that were mainly mild and asymptomatic with no dose effect, and mild hair thinning and hair loss, which rarely led to treatment discontinuation.
More information can be found in this press release from October 2010.

Hope this is educational!  Sounds like there are some exciting new oral therapies coming soon!

For more information about ongoing clinical trials, visit http://www.clinicaltrials.gov/.

Tune in next time for "Future Therapies Continued."

Wednesday, February 23, 2011

Mommas Don't Let Your Babies Be Pale-Skinned

On February 17th, I wrote out the 9 things I learned from the Valentine's Day Teleconference.  The 8th topic I discussed was Vitamin D.  I wrote: "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)."

The next day (2/18/11), I was made aware of new articles discussing research that shows that sun exposure and higher levels of Vitamin D may have a role in preventing MS.  We have known for some time that people living closer to the equator have a lower MS incedence rate and there have been theories that this has something to do with sun exposure and vitamin D levels, but a new study from Australia is out which expands on this theory.

One article states, "Higher vitamin D levels and exposure to sunlight appear to be independently protective against multiple sclerosis."  A study done in Australia, found that "sun exposure and vitamin D levels each predicted disease risk."  Previous studies had linked low vitamin D levels with a higher risk for MS.  So, apparently, I should have spent more time outside during my youth and I should've worn less sunscreen.  On the one hand, you increase your risk of developing skin cancer, but on the other hand you may increase your risk of developing MS.  The study found that "people with the most evidence of skin damage from sun exposure were about 60% less likely to develop MS symptoms than people with the least sun damage."  Of course, the article warns against too much sun exposure due to the increased risk of skin cancer.

I felt like I got a decent amount of sun growing up - I remember many summer days spent at the pool, my family had a boat for a time and we spent quite a few weekends out on the lake.  Back then, I don't remember caring too much about applying sun screen either.  My sun exposure lessened as I grew older - between school, work, volleyball, and other obligations, I am sure that I no longer get as much sun exposure and I am much more conscientiuos about wearing sun screen.  Maybe it is time to get outside more and leave the sunscreen at home.  Since I have already been diagnosed, it may not help, but it certainly cannot hurt.  In addition, I intend to take Vitamin D supplements - again it cannot hurt to get a little more D (unless I develop kidney stones, but I will keep my intake at a reasonable level).

While, this is not a cure, it does appear that we have discovered one way to, possibly, lower the incidence rate of MS.  One thing is for sure, when I have children, they will definitely be spending a lot of time in the sun! 

For more articles/information regarding this topic, go to:

More sun and vitamin D may prevent MS risk

MS Less Likely With Plenty of Sun, Vitamin D

Vitamin D: The Multiple Sclerosis Connection

NMSS - News Detail

Now, the negative side to the sun (other than skin cancer).  Other new research suggests that warm weather may hurt cognitive skills in those with MS; "people with multiple sclerosis (MS) may find it harder to learn, remember or process information on warmer days of the year."  Other studies have linked warmer weather to more disease activity and we know that raising the core temperature of an MS patient can often worsen symptoms, but this is the first reasearch to focus on cognitive functioning.  A press release states that "40 people with MS and 40 people without MS were given tests that measured learning, memory and the speed at which they processed information."  The MS patients also underwent brain scans and daily temperatures on test days were also recorded.  "The study found that people with MS scored 70 percent better on thinking tests during cooler days compared to warmer days of the year. There was no link between thinking test scores and temperature for those without MS."

There is always good news and bad I guess.  Interesting stuff though. 

My next post (which may need to be broken down into 2 to 4 posts) will focus on my 2/17/11 post's 7th topic of discussion: 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.

Tuesday, February 22, 2011

MS is . . .

The Women's Fair seemed to go over pretty well, hopefully we were able to encourage people to join the Walk - new walker's are always a plus!

While working the booth at the Women's Fair, I was asked what exactly is MS.  It dawned on me that I have been blogging about how MS has affected me and the up and coming therapies for MS, but I never mentioned anything about what MS is.  For those who don't know, Multiple Sclerosis occurs when the immune system attacks the central nervous system.  Essentially people with MS have an overactive immune system that begins to identify the central nervous system (CNS) as a foreign invader and begins to attack the CNS.  If you think of the CNS as a set of wires that carry electrical impulses throughout your body telling your body what to do, how to feel, etc.  Then the wires are protected by an outer covering (called myelin).  In MS patients, the immune system attacks the myelin sheath.  When the myelin sheath is damaged then the CNS can no longer carry a clear signal because those electrical impulses can no longer be carried throughout the body without interruption.

I hope this helps some of you to better understand what MS is; for more information, you can click through the following links:





In my next post, I will begin to eleborate on the up and coming therapies that I discussed in the "Teleconference Update." 

Friday, February 18, 2011


Last night, I listened in on The Latest Updates in MS teleconference.  It was a little disappointing because I really didn't learn anything about any of the latest updates in MS.  The speaker mostly just glossed over everything, giving the names of the up and coming therapies, but little to nothing more.  Plus, anything additional that was said about any new therapies, I had already learned from the teleconference on Monday.  What I did take away from last night's teleconference was presented by Michael (an MS patient) who is active in the fight against MS (he has a facebook support group, "My MS Team," and a twitter following, @mymsteam).  He discussed his own experiences and one of the main things he talked about is the importance of exercise.  While discussing this topic, he mentioned how much Yoga has helped him both physically and emotionally (I have heard similar testimonials from others regarding yoga for MS patients).  He also provided a website, "You Can Do It Yoga for MS," which has information regarding Yoga for MS.  Michael talked about how MS affects your flexibility and balance, which yoga can help you maintain.  Also, yoga has a spiritual or emotional aspect that can be helpful for MS patients since depression often plagues those with MS.  This, I felt, was helpful information.  I haven't been great about exercising lately and I really need to start up a yoga routine!  Another website that I came across a few month ago is My MS Yoga; they offer a free Yoga for MS DVD. 

Now that I have listened to both teleconferences regarding up and coming therapies and things to look forward to regarding MS treatment, I have much research to do and will report back to you all soon!  Hope everyone has a great President's Day weekend!  If you are in the Wichita area, you should stop by the Women's Fair - I will be working the Walk MS booth.

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.

Wednesday, February 16, 2011

Valentine's Day Teleconference

Good thing my husband and I celebrated Valentine's Day on Sunday!  Our actual Valentine's Day was spent listening to the National MS Society's (NMSS) Teleconference Clinical Trials and Research on the Horizon and then watching K-State beat KU in basketballThe teleconference included a lot of information in a short amount of time.  The speaker, Dr. Mattson, provided about 35 - 40 minutes worth of information on everything from research to find the cause of MS, ABCR drug therapies, Gilenya (the oral drug available), CCSVI, other medications in the works, Vitamin D, to the Walking Pill.  With so many topics to cover in such a short period of time, his information was pretty generalized because he did not have time to go into depth on any one topic.  However, I did learn about what is up and coming, so now I can do my own research regarding all of that.  Soon, I will provide you with a summary of what I did learn from last night's teleconference, then I will do my own research about these topics and report back.

There is another teleconference tonight put on by Shared Solutions called "Latest Updates."  It is also about current research.  I am going to try to listen in on that one, then I can report back on all I have learned from these teleconferences at one time.  Hope everyone had a wonderful Valentine's Day!

Sunday, February 13, 2011

Teleconference Tomorrow

Since my husband and I are going to celebrate Valentine's Day this evening (dinner out and a movie in).  I am going to spend tomorrow evening participating in the National MS Society's Midwest Regional Teleconference Clinical Trials and Research on the Horizon, which "will discuss newly available or soon to be available immunotherapies - oral and infrequent infusion - that will provide new options in the treatments of MS."  I hope that the teleconference will be informative - I look forward to reporting to you all what I learn. 

Until I am able to report back on the teleconference, I hope you all have a Happy Valentine's Day!

Saturday, February 12, 2011

More News - Interesting Stuff

My husband and I plan on having children at some point in the future.  Also, I find it interesting that pregnancy suppresses the immune system and doctors are researching ways to utilize that information to find a cure.  So I decided to read the "Baby Time?" article in last month's "Momentum" magazine (from the National MS Society).  The following are excerpts from the article (the parts that I found most interesting).

First, a bit more about the immune-suppressing effect of pregnancy.

Pregnancy hormones are such a potent suppressor of MS symptoms that Rhonda Voskuhl, MD, director of UCLA’s Multiple Sclerosis Program, has been investigating whether they might work as a treatment for the disease. So far, the results have been promising. When Dr. Voskuhl’s team gave estriol—a hormone produced by the placenta—to women with MS, the size and number of inflammatory lesions in their brains dropped by 80%. Clinical studies of estriol are continuing.

Next, the after-effects of pregnancy on someone with MS.

After nine months of pregnancy, you might think the hard part is over.  But about 40% of women find that the symptom reprieve they enjoyed during pregnancy comes to an abrupt halt after their baby is born. They have
what’s known as a “catch-up” relapse. Their MS comes back with a vengeance.

“Postpartum, the immune system seems to recover and become even more active than it is normally, and this appears to increase the risk of MS attacks,” said Stephen Hauser, MD, neurologist, immunologist, and chair of neurology at the University of California, San Francisco. Although doctors don’t know exactly why women face a higher risk for relapse in the postpartum period, they suspect that hormones released during this time,
such as prolactin (which stimulates milk production), reactivate the immune response.

Relapses are most common in the first three months after the baby’s birth. Research finds that women are more likely to relapse during the postpartum period if they experienced relapses the year before they got pregnant and during their pregnancy.  Ordinary MS symptoms can add more strain to the demands of new motherhood.

Next, information regarding making a decision about breastfeeding.

Experts say, hands down, breast milk is the best food during the first year of a baby’s life, but the decision to breastfeed is complicated. Breastfeeding can be tiring. It is hard to hand off the 3 a.m. feeding to get a little extra sleep. Producing the milk takes energy, too. These are big considerations for a new mother with MS. More importantly, just as in pregnancy, doctors usually recommend staying off disease-modifying drugs while you breastfeed. (You can take steroids while nursing, however.)

If you decide to stay off your meds and breastfeed, there is some evidence that nursing might protect you. “The protection afforded through breastfeeding can be as beneficial, or more so, than the immune-suppressant drugs,” said Elsie E. Gulick, PhD, RN, FAAN, professor emeritus at the Rutgers University College of Nursing, Newark, N.J. When she studied new mothers with MS, Dr. Gulick discovered that women who did not breastfeed were three times more likely to have relapses than mothers who breastfed during the first three
months of their baby’s life. In other research, 87% of women who didn’t breastfeed had a relapse in the first two months after delivery, compared with only 36% of women who breastfed exclusively.

These were just a few things that the article discussed, a lot to think about!  To read the full article, click here.

On another note, interesting information regarding the correlation between Vitamin D deficiency & MS:

"Higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of having a first demyelinating event that can be the first indicator of multiple sclerosis, in a comprehensive study undertaken in Australia, called the Ausimmune Study. (A first demyelinating event, in this study called FDE, is also known as clinically isolated syndrome (CIS), a first neurologic episode caused by inflammation/demyelination in the brain or spinal cord.)"

"The findings provide additional support for previous suggestions that sun exposure and vitamin D may help protect against developing MS. It remains to be seen whether safe and effective strategies can be developed that utilize this potential protection without the risks involved in overexposure to the sun or overdoses of vitamin D supplements, and whether these findings have relevance for individuals who already have MS."

To read the full article, click here.

Time to go take my shot - bye for now! 

Thursday, February 10, 2011

Definitely Good News!

As promised, the information my sister sent me is detailed below.

First, McGill/JGH researchers successfully reverse multiple sclerosis in animals.  According to the article, "A new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans, say researchers at the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal."  Essentially, the treatment puts MS into remission by suppressing the immune response.  Very exciting!  Maybe we are on track to a cure! 

Second (for the women in the crowd), there is new research that may help to explain why pregnant women with MS tend to not have attacks/relapses during pregnancy.  We have known for some time that this occurs, but since pregnant women don't tend to volunteer to be research guinea pigs (rightfully so), we have not known why this is the case.  But, this article, helps to explain it.  The gist of the article is that
the expression of an enzyme known as pyruvate kinase is reduced in immune cells in pregnant women compared to non-pregnant women.  This study is "significant because the newly discovered mechanism points to a pathway that could be targeted for treatment. 'It may be possible to design drugs that mildly suppress pyruvate kinase activity as a means of replicating the immune status of normal pregnancy,' says Petty."  Exciting stuff going on here! 
Both of these articles give me hope that we may be working toward a cure!  At least we are learning more about the disease and trying to come up with plausible solutions!  This is good news - definitely more so than the info in the last post!

Thanks to everyone who has contributed to my fundraising efforts for Walk MS 2011!  I have raised $2000!  Very exciting - this money can really make a difference!  Although, I have "reached" my goal, I would still really appreciate more donations!  It would be so great if I could go above and beyond my goal!  Any amount, great or small, is MUCH appreciated!  If you are interested in learning more, please visit my personal page!

Tuesday, February 8, 2011

Good News???

Shortly after being diagnosed with MS, I signed up for a number of newsletters, magazines, etc. that provide information regarding MS in some way, shape, or form.  I got an email newsletter today from the MS International Federation (these emails generally include ongoing research updates).  One of the "updates" said:

Untreated patients with MS are generally thought to have a lower risk of cancer than the general population. The authors aimed to assess the effects of disease modifying therapy on cancer risk in patients with MS.

There was no increased risk of cancer among patients treated exclusively with Immunomodulatory drugs (Interferon beta-1a, -1b, and glatiramer acetate) but those treated with immunospressant treatments (azathioprine, cyclophosphamide, mitoxantrone, mycophenolate mofetil, natalizumab, methotrexate, fingolimod, cladribine, and teriflunomide) showed an increased risk which was greater with duration of exposure (p<0.001).

The authors suggest knowledge of these results may influence the attitude of the medical profession with respect to the benefit to risk ratio when proposing DMT to MS patients.

Why are people researching this?  I understand that people may be concerned that medications could cause cancer, and I suppose it is good to know that some medications do not correlate with an increase in cancer and others do, but couldn't these people spend their time researching a cure for MS?  It just doesn't make a whole lot of sense to me.

Although, the above "update" didn't make me feel that research was being done in a useful way, the following information that my sister found and emailed to me, does give me some hope that, at least, some productive research is being conductive. 

GeneTalk with 23andMe: Multiple Sclerosis

Multiple sclerosis (MS) is a chronic disorder of the central nervous system, which causes unpredictable and varying symptoms. MS usually strikes between the ages of 20 and 50 and is more common in women than men. Recently, a number of research groups have found genetic variations associated with increased risk for MS.
23andMe corresponded with Dr. Lawrence Steinman about the complex interplay between genes and environment—and how this affects a person’s risk of developing multiple sclerosis (MS). Dr. Steinman is Professor of Neurology and Neurological Sciences, and Chair of the Stanford University Program in Immunology. His laboratory utilizes novel technologies to study the pathogenesis of autoimmune diseases, particularly MS. Dr. Steinman is a clinician at the Stanford University Medical Center, where he treats patients with MS and other autoimmune diseases.
23andMe: How does a person’s genetic makeup affect their risk of developing MS?
Dr. Steinman: There are now three genes that show an association with susceptibility to MS. The magnitude of these associations is not especially high for any given individual. Even if you had an identical twin with MS, the probability that you too would have the disease is only about one in four. If your twin is fraternal rather than identical the risk that you would have the disease drops to somewhere between 1 in 20 and 1 in 50. Therefore, there are stronger influences other than the versions of genes that you inherit governing whether you develop MS.
23andMe: Historically, how have doctors used genetics when predicting a patient’s risk of developing MS?
Dr. Steinman: At present doctors do not use genetics for predicting a patient’s risk of MS. The riskier versions of the three genes now associated with the risk of MS do not confer a very large increase in risk. The risky version of HLA-DRB1 confers a relative risk of only three- to four-fold, so it is not overly helpful for estimating a risk that on average is approximately one per one thousand in the United States.
The higher-risk versions of the other genes associated with MS, IL7RA and IL2RA, carry a much lower relative risk than HLA-DRB1*1501. [Note: 23andMe does not report genotype at IL2R.] These two genes explain only about 0.2% of the risk for MS. The higher-risk versions of IL-2R and IL-7R are found in about 70 percent of those without MS in the population.
23andMe: Recent genome-wide association studies have enabled scientists to identify genetic markers associated with increased risk of MS. How do you think this information can be put into clinical practice?
Dr. Steinman: Right now, this information is more useful as a research tool to identify clues to the pathological mechanisms involved in the disease. Other analyses look at what genes are actually switched on in the MS lesions in brain tissue from MS patients; these studies are revealing some remarkable clues on how the disease attacks the white matter of the brain.
For instance, we recently reported that the gene encoding the major protein in the lens of the eye is switched on in brain tissue from MS patients. While this may be the brain’s response to the damage caused in MS, the immune system also attacks the newly produced protein, preventing it from exerting its full protective activities.
23andMe: If I had a collection of the riskier versions of the SNPs known to be associated with MS, what would you suggest that I tell my personal physician?
Dr. Steinman: There would be no need to worry about the riskier versions of these SNPs. These SNPs are found in a high percentage of normal individuals in the population.
The reason that this is good, in my opinion, is that research is going toward possible genetic links to MS.  
My sister forwarded me some other information that I have, unfortunately, not had a chance to read yet.  I will report to you all when I have read the other information she sent.  Also, yesterday I received my first "Momentum" magazine from the National  MS Society and I am excited to read through that and report what I learn. 
Had a good day today, but I am still very busy at work.  I will try to post again very soon.  Hope all is well! 

Saturday, February 5, 2011

Busy Month

The month of February promises to be a busy one.  I have a lot going on at work this month, plus I have a lot to do for the Walk MS Committee.  At the end of the month, I have to go to South Carolina for a week for some training deal for work.  How sad is it that I am already looking forward to March and February just began? 

On the bright side, I think I finally got everything figured out on the pharmacy front!  Plus, I downloaded the iGive.com toolbar that benefits the National MS Society's NYC Chapter (I talked about this program in the "More Ways to Help" post last month.  For more information on the iGive program, go to the NYC Chapter's website.  I hope to begin using that to give back every time I make an online purchase.  I think this is such a great idea and a simple and no-cost (assuming you already shop online) way to give back.  The sad thing is that this program has been in place since 1999 and has only benefited the chapter $963.19.  Eleven to Twelve years running and not even $1000 has been raised - hopefully we can get the word out about this program and it can start doing more good!  If you make online purchases, please consider going through iGive.  I am going to talk to my local chapter about trying to put something like this in place! 

Well, I better get some work done to lighten the load that this month is piling on.  Hope you all are well!

Thursday, February 3, 2011

The Saga Continues

So, guess what showed up today?  Stumped?  My prescription order from the old pharmacy was delivered to me today.  Since I was told that they were no longer in my insurance network, I was concerned that by receiving this, I would be billed for the meds (assuming insurance was not covering them).  Therefore, I wanted to find out what to do - whether to return it to the old pharmacy; whether, since it was their mistake, they would just "write it off;" etc.  So, I ended up spending about 4 hours (including hold time listening to elevator music) today talking to 7-10 people (from insurance reps to the old pharmacy reps to the new pharmacy reps and a few people in between).  I was able to talk to a couple of people that actually cared to listen and help me solve the problem.  In the end, I found out that the old pharmacy has, at least two locations.  One of their locations is still in my network, so they were able to have my insurance approve their shipment and proceeded with shipment (hence the package that showed up in my office today).  The last call I made (after I learned that the old pharmacy had my insurance's approval to send me the meds) was to the new pharmacy to cancel the order through them.  I am now in love with the new pharmacy.  They have been super helpful every time I have called them, they are competent, efficient, and downright awesome people.  The woman I spoke with said that they can view all of my insurance activity so she offered to double check to make sure that my insurance had, in fact, approved the shipment from the old pharmacy.  She said that they had, offered to cancel my shipment, but told me from now on, to be safe, I should go through them for my meds.  SHE DID NOT NEED TO TELL ME THIS!!!  I told her that I definitely would be going through them from now on.  I wanted to tell her that there was no way I was going to deal with the idiots from the old pharmacy anymore.

I am sure I could have elaborated much more on this story and you could have really felt my pain and frustration, but I will spare you (and me).  I am exhausted from dealing with elevator music and customer service reps who are not helpful at all (I hate to say that because there were a couple of people that were able to help me, but overall today was a CLUSTERF***).

I wish my experience upon NO ONE!  Have a good night (I think I will go relax with a bottle, I mean glass, of wine).

Wednesday, February 2, 2011

Frustrations and Busy Days Ahead

With the snow piling up outside, work seems to be piling up in my office.  I have a very busy schedule over the next few weeks (practically all of February).  I will do my best about posting, but I may only get around to posting a couple times a week. Now for the frustrations . . .

Back in November, my husband and I switched insurance because my husband got a new job and we had previously been on insurance through his work.  When we made this switch, I had only been taking my medicine for about a month and I had a 90 day supply.  I updated all of my insurance information with everyone that I thought needed it for purposes of getting my meds.  I learned that a new pharmacy would be delivering my meds.  Lucky I had that 90 day supply because it took them a MONTH to get the prior authorization all squared away.  It seemed like I was talking to someone (doctor, insurance provider, pharmacy representative, etc) almost daily.  Finally, that all got squared away and in December I called to order a new supply of medicine.  I think I had about 10 days worth of meds when I called.  They told me the delivery date and it was 5 days from the day I called (I thought this was kind of crazy since the other pharmacy had taken one day).  I asked whether I needed to be present to sign for delivery and was told no, so I thought everything was good to go.  Then, the day that delivery was supposed to occur came and went with no medicine.  That evening, I called asking where my meds were.  They didn't know anything, but re-ordered the delivery and gave me a new date of delivery (I started thinking how lucky I was that I called when I did, had I waited any longer I may have been without meds for days).  The day before the new delivery date, I got a call from the place that would actually be sending the meds.  They told me that their state law required that the meds be signed for; since my husband and I work during the day, I ended up having to have them ship the medicine to my work address (I really didn't want to do that, but really had no choice).  The next day, I got the delivery at work with no hitches.  I then realized that I had only gotten a 30-day supply (I didn't know why that had changed, but was happy that I had gotten my meds so didn't worry too much about that).  Fast forward to last week Thursday.  I, again, had 10 days worth of medicine left when I called to re-order.  They set everything up and tell me that delivery will be made on Tuesday (yesterday).  Then, on Monday, I got a call from the pharmacy telling me that the insurance company was reporting that coverage had terminated (WHAT!?!?!  not possible).  I came to find out that, somehow, they still had all of my old insurance information (not sure why they ever had that since I never used this pharmacy with the old insurance).  We got everything updated, I ended up talking to 3 different people until they finally got everything updated and taken care of and set up a new order for delivery (shipment was to be on Thursday - tomorrow).  Then, last night (after getting stuck in the snow at the foot of our driveway and having my amazing husband shovel me out) I had a voicemail from the pharmacy telling me that they were now out of my insurance network and my prescription would now be taken over by ANOTHER pharmacy company. 
Apparently my insurance provider switched to a new pharmacy company and somehow I did not know this.  So, I called the new pharmacy.  The woman I spoke with explained that they would get everything transferred over to them, that they would get the prior authorization and then could set up an order.  I then voiced my concerns about not getting my medicine on time and how it took a month for the last pharmacy to get the prior authorization, etc.  She eased my concerns explaining how their company works and that there should not be any problem.  She said that they would put out all of the transfer and prior authorization requests as urgent and then delivery would take place the day after an order was made (barring weather problems of course, which with the weather we are having doesn't make me feel a LOT better).  She told me that the whole process shouldn't take more than 72 hours, but that if I didn't hear anything within 24 hours, I should call (today) to check on the status to try to speed up the process as much as possible.  I called this evening and the woman I spoke to said that everything was ready for delivery (unfortunately, due to the weather, the earliest I can get delivery is Friday).  I think I run out of meds on Saturday (cutting it close).

Although, I have been frustrated about this whole situation and I am somewhat worried that I may not get my meds on time, I do feel as though this new pharmacy knows what they are doing and I feel confident that I will not have the same or similar problems as I had with the last pharmacy.  The woman I spoke with last night explained to me how their company works and I started to feel better.  Then, the woman I spoke with tonight told me more about what the company does and she said that they will call me when I have 2 weeks left of my prescription to begin setting up delivery (something that the last pharmacy would never have done).  So, overall, I am feeling pretty good about this new company.
Now, I just hope that I am able to get the new order delivered before I run out of my current supply.  FINGERS CROSSED!

Tuesday, February 1, 2011

God's Plan

My brother left a comment yesterday regarding his own struggle with his diagnoses (asthma and a minor case of Klippel Feil Syndrome) and his relationship with God that has helped him to appreciate the blessings God has bestowed upon him.  He then stated, "The Lord never gives us more than what we can handle. You are a strong woman--look at what you have accomplished. MS may be your biggest cross to bear, but God believes you can handle it where someone else may not have been able. God has faith in you!!! The question is 'Do you have faith and trust in him?'" 

Although, I have questioned God and wondered "why me?," I have never stopped believing in and putting my faith in God.  In fact, I have come to believe that I was diagnosed to make a difference.  I have yet to figure out, exactly, how I will accomplish this, but I believe that I can and will.  I am only 27 and believe that I have a long life ahead of me, and I am dedicated to making some difference in the lives of those with MS during this lifetime.  As you know, I have already become more involved - working with the National MS Society on the Walk MS Committee and continually looking into more ways to help/get involved.  I believe that this is God's plan for me.

I appreciate my brother's wisdom and agree that God never gives us more than we can handle.  Like I have said before, I consider myself to be very lucky overall.  I have amazing people in my life to help me and support me in every way that they can.  I am a smart, educated person, and I used my mad research skills to practically diagnose myself before actually being told by the neurologist that I had MS.  I knew that there was a good chance that MS would be my diagnosis (even though I had hoped for something else).  This knowledge helped me significantly.  I was better prepared to cope with the news (depression can often be a problem for people with MS, but this has not been a problem for me).  Also, I was familiar with the disease, knowing people who had been diagnosed, so I had people to talk to who knew what I was going through.  I have co-workers who have been diagnosed and am very lucky to work with people who understand the disease and have been very supportive.  This is especially great because many workplaces view MS as a disability and many people have suffered in their careers because of that.

Had this diagnosis come at another time in my life, I am not sure I would have been able to handle it (at least not as I have).  There were a number of things going just right in my life that have made this diagnosis much less devastating.  This helps me to believe that God never gives us more than we can handle.  My brother is right and I believe that wholeheartedly.  I cannot say that I am happy that I was diagnosed with MS, I may complain at times, and I may not always understand it, but I know that God has a plan for me and I believe that I was diagnosed to help, which is what I intend to do.

Thank you for your comment (hope you don't mind that I used it as a topic for this post).  I love you very much, I am sorry that you were upset with God at one time about your own setbacks.  Although, I have known about your struggles to some extent, due to our age difference, I don't think I have ever fully understood what you have gone (and still go) through.  We are blessed in so many ways!  I am constantly reminded of how blessed I am by you and the rest of my family and friends.  I look forward to reading those books :)