If you live in the following cities in BC and would
like to see an MS clinic opened for your area, please participate! Deadline
is May 1. "This region includes the communities of Williams Lake, 100 Mile House,
Cache Creek, Lillooet, Lytton, Merritt, Kamloops, Barriere, Clearwater, Blue
River, Chase, Salmon Arm, Sicamous, Revelstoke, and all communities in between.
The questionnaire, is available at www.mssociety.ca/kamloops or
by calling 1-888-304-6622. The same number can be contacted for assistance completing
the form. Deadline for submissions is May 1."
I got the phone call today about starting the process for the Fingolimod clinical trial! Yay! I'm excited. The first appointment is on May 7th. This will be the screening appointment where they'll run me through all the tests and make sure I'm a good candidate on all health aspects. So, this is what I'm in for:
- Physical exam
- Pulse and blood pressure
- Blood samples for sending to Novartis for future evaluations
- Blood tests for HIV and Hepatitis
- Pregnancy test
- EDSS exam (Expanded Disability Status Scale)
- MSFC exam (MS Functional Composite)
- PFT (Pulmonary Function Test)
- Chest X-ray
- ECG (Electrocardiogram)
- And last but not least an eye exam
Phew! That'll keep me busy! I'll be bringing lots of knitting as you have to
know they'll be tonnes of waiting time in between all these tests.
Kamloops and Area want an MS Clinic!
If you live in the following cities in BC and would like to see an MS clinic opened for your area, please participate! Deadline is May 1. "This region includes the communities of Williams Lake, 100 Mile House, Cache Creek, Lillooet, Lytton, Merritt, Kamloops, Barriere, Clearwater, Blue River, Chase, Salmon Arm, Sicamous, Revelstoke, and all communities in between. The questionnaire, is available at www.mssociety.ca/kamloops or by calling 1-888-304-6622. The same number can be contacted for assistance completing the form. Deadline for submissions is May 1."
One week to go
Well, it's one week today until I will forever change the non-medicating way
I've been living with my MS. On the one hand, I'm feeling really positive and
good about doing something about my disease. Whether it's being fully admitted
to this clinical trial (I'm assuming I meet all the criteria at this point),
or moving to a current day therapy I'm happier making a dent in what the disease
is doing in me. I may not be able to predict, control or change what "it's"
doing but I sure as hell want to disrupt it as much as I can! On the other hand,
I have one last week to live with only the symptoms of my MS (few and far between these
days) and not any potential side effects of medication. I feel like I should
be taking these last days of med free life for granted as they aren't likely
to happen again considering I can't hide from my MRI results. Nor would be doing
myself any favours in not doing medication as I'm going to have to live with
my MS for the rest of my life!
YAY! What a fantastic walk! The morning started out with rain, but then dried
up when the walk started. Phew! The Tri-Cities raised over 70k this year! Wow!
Thats up from 40-something K last year. I'm impressed! Team Mandatory Rest Period
raised almost $4000.00. I don't have the final tally as I'm picking up some
extra donations next week, but I'm super impressed and humbled by the generosity
from all who donated to us. And thankful to all my team members who helped me
(and all other MS'ers) raise money to change my future - Mom, Stan, Dad, Lynda,
Tod, Jill and Lyn!
Yes, that's my midriff in the photo. I wore that sign on the walk :)
Glad to finally see some positive
news coming out from Tysabri land. Seems like a short time ago where all
the news was very negative. So, vision loss reduction at 47%. Good stuff. "Laura
J. Balcer, MD, MSCE, and colleagues analyzed data from two randomized, double-blind,
placebo-controlled, phase 3 trials involving 2,138 patients with relapsing MS
who were treated either with natalizumab (Tysabri, Biogen Idec) every 4 weeks
for 2 years or placebo. The researchers found that patients treated with natalizumab
had up to a 47% reduction in vision loss, defined as a loss of two or more lines
of visual acuity, compared with placebo-treated patients, according to a press
release from the university. Specifically, natalizumab reduced the risk of clinically
significant vision loss at the lowest contrast level â€” 1.25% â€” by 35% in
one of the trials and by 28% in the second trial, according to the study. "Not
only does natalizumab prevent the worsening of vision loss in people with relapsing
MS, but it is also associated with significant reductions in the likelihood
of sustained vision loss due to inflammatory demyelination of nerve fibers,"
Dr. Balcer said in the release.
Okay, yesterday was actually my birthday, but still ;) Happy Birthday to me!
I'm 31 now. Yippee. Still no word on when i'll be starting my trial... i'm kinda
glad I didn't have to start my first injection lesson on my birthday! I have
Mondays off and I know the trial folk are available that day of the week for
trial tests and activities ect. I figure that will be the easiest on my schedule
to just do it on that day. My step mom has also offered to learn how to do an
injection in case I'm not okay with it... but I'm still thinking I need to figure
out how to get over myself and learn to do it. I still haven't had any new symptoms
really. I thought perhaps I saw a bit of a tremor in my left hand a cou0ple
weeks ago.... well, my thumb in particular. But then I wondered if it was just
because of a non balanced diet at that moment. And I haven't seen it again, so
whatever. I'm still pretty surprised to have gone this long without any new
attacks. Don't get me wrong, I'm grateful for it! I'm just surprised.
Avonex most cost effective for Interferon choices of MS drugs
The timing of this
report now coming out *right* after Copaxone
gave thier results just makes me laugh! So, Copaxone might be cheaper when compared
to all the available MS treatments (excluding Tysabri), but Avonex is cheapest
in the Interferon class of drugs (AB and R). Anyone losing interest yet? Does
any of this info give valid data to you in choosing the best medication for
YOUR health? "The MS Benchmarks analysis showed the total costs over one-year
to MS patients on interferon beta therapy were: AVONEX, $19,896.15; Rebif(R)(Interferon
beta-1a) sc, $22,207.85; and Betaseron(R) (Interferon beta-1b),$21,073.33."
Interesting findings posted
showing this treatment reduces nerve damage and stopped myelin loss in mice
with the mouse version of MS: "Harald Neumann and his colleagues realised that
bone marrow cells called myeloid
precursor cells could be the answer because they naturally migrate into
the CNS and can form microglia, which act as immune cells for the CNS and could
clear the debris. Microglia also produce a protein called trigger receptor expressed
on myeloid cells-2 (TREM2). The scientists collected myeloid precursor cells
from mouse bone marrow and modified it to produce TREM2. These cells were then
injected into mice with experimental autoimmune encephalomyelitis (EAE), which
is used as an animal model for MS. Normal myeloid precursor cells were also
injected as a control. In healthy mice or those only just beginning to show
symptoms of EAE, neither cell type migrated to the spinal cord. However, when
EAE symptoms were at their peak, both sets of myeloid precursor cells migrated
into the mice' spinal cords where the TREM2-producing cells reduced nerve damage
and halted myelin loss. The therapeutic cells also increased the amount of debris
cleared, and an anti-inflammatory environment was created. This was shown by
increased levels of interleukin-10 (IL-10), a human cytokine that prevents the
production of pro-inflammatory cytokines such as pro-inflammatory cytokines
like Interferon-gamma, IL-2, IL-3, TNF-alpha and GM-CSF. However, in an article
detailing the results in PLoS
Medicine the researchers admit that although increased IL-10 levels might
be due to the TREM2-modified cells, "we cannot exclude the possibility
that TREM2-transduced myeloid precursors act indirectly via a secondary immune
organ to stimulate a regulatory immune cell type migrating into the CNS".
The authors go on to explain that IL-10 helps regulate the immune system and
is vital for the recovery phase of EAE; remission has been shown to be impaired
in IL-10-deficient mice (as previously
reported by scientists at Harvard Medical School). "TREM2-transduced
myeloid precursor cells applied intravenously ameliorate EAE either locally
inside the CNS or indirectly via another regulatory immune cell type
by clearance of tissue debris and resolution of inflammation, thereby opening
new avenues for cell therapy of inflammatory and degenerative CNS diseases,"
the authors conclude."
Which MS drug (CRA or B) costs less over time?
big study just came out showing that Copaxone is the big winner at being
cheaper over time in managing MS symptoms. This type of info concerns me at
bit... in that insurance companies will use this to dictate what form of treatment
you should be on instead of what your doctor feels you should be doing for your
disease. If you're prescribed something different that agrees with you more,
will you not get coverage based on the assumed costs to the insurance folk?
Ugh. "A literature-based Markov model was developed to estimate the economic
outcomes of five treatment strategies: symptom management (e.g., physical therapy/exercise
and pharmacological treatment) alone and symptom management combined with COPAXONE®
(glatiramer acetate injection), IM-IFNÎ²1-a
(Rebif®), or SC-IFNÎ²1-b
(Betaseron®) in patients
diagnosed with RRMS. This is the first economic model in MS to incorporate long-term
data on treatment effects, account for differences among clinical trial designs
of the immunomodulatory therapies and present the results in terms of cost-utility
and cost-effectiveness. The model design took into account disease modifying
therapy (DMT) acquisition costs, state-specific MS-related medical costs and
the cost of lost worker productivity. The analysis found that the total cost
per patient over the time horizon of a patient's
lifetime for COPAXONE® was
estimated to be 34.7 percent, 16.8 percent and 14.5 percent less than Rebif®,
Betaseron® and Avonex®,
respectively. Sensitivity analyses showed the results to be sensitive to changes
in health state utilities, the percentage reduction in disease progression rates
as measured by EDSS in the first two years of therapy used to estimate immunomodulatory
therapy treatment effects, model time horizon and immunomodulatory therapy acquisition
Just saw this annoucement
on findings posted in Nature Medicine about positive findings using Cannabis
that shows possible repair of damage and slowing the progression of MS in mice.
"Cannabis works because it stimulates molecules known as cannabinoid receptors
within the body. The group had previously reported that THC could alleviate
disease symptoms, and also save nerves from the damaging effects of the disease
- thus potentially, via the cannabinoid receptor CB1, slowing down the development
of progressive disability. They had not previously examined the influence of
cannabinoids on immune aspects of the disease. Now their most recent study has
successfully separated the roles of cannabinoid receptors CB1 and CB2 on neurons
and T cells, and investigated their effect in controlling central nervous system
autoimmunity. It showed that CB1 receptor expression by nerves in the brain,
but not T cells, could suppress the development of an experimental MS-like disease,
by stimulating the release of anti-inflammatory molecules, whilst in contrast
direct stimulation of CB2 receptors by T cells was also able to control inflammation
associated with the condition. This suggests that cannabis-like drugs may have
the potential to block the autoimmune response which drives disease development.
Professor David Baker said: â€œWhilst targeting CB1 receptors for therapy runs
the risk of causing the unwanted â€œhighâ€ to achieve these effects, we can
get the same result by targeting CB2 receptors, which avoids these risks. Therefore,
we can start to think about using new drugs that harness the potential medical
benefits that cannabis has to offer but move away from the issues over the legality
and recreational use of the plant productâ€.
Accupuncture for MS
Must be alternative health day in the news... here's some info
on accupuncture as a treatment option for MS'ers. "While there is no cure for
the disease, acupuncturists can offer significant help managing symptoms and
side effects. In a 2002 survey of multiple sclerosis patients at the Rocky Mountain
MS Center in Boulder, Colo., more than 50 percent of patients receiving acupuncture
noted significant improvement in symptoms of pain, anxiety, depression, fatigue,
muscle stiffness and numbness. Additionally, many noted improvement in walking
problems, weakness and balance, while others saw positive changes in urinary
and bowel problems. Traditional Chinese medicine, a 5,000-year-old medical tradition,
has no definitive diagnosis of multiple sclerosis. Many classical texts refer
to a syndrome known as a Wei (or atrophy) syndrome. There are multiple presentations
of a Wei syndrome, and each can result from different factors. These may include
any combination of improper diet, emotional stress, shock and possibly heredity.
Visits to a licensed acupuncturist for multiple sclerosis may include traditional
acupuncture, electroacupuncture (gentle electrical stimulation of meridian points)
as well as dietary advice, Qi Gong and Chinese herbs. Treatment will be designed
to help resolve symptoms as well as address underlying conditions that may cause
symptoms. Traditional Chinese medicine is in no way a replacement for conventional
therapies. The medical advice of a board-certified neurologist should be followed
during any course of treatment." You know, I gotta say that I love how they
start out and end this article by saying accupuncture isn't a cure but this
could help with symptomatic care. Thats very honourable as I often see alternative
stuff suggesting they have a cure all and frankly, it negates the validity of
the treatment in my opinion. It's kinda like when someone comes up to you and
tells you that their naturopath has MS patients that they have cured and I should
go see them. Ummm ya. If there was an actual cure, don't you think the world
wide population of MS patients would know this by now!? Don't say things like
that to me. i run from those claims sceaming.
Positive Clinical Results From MN-166
Not sure I've heard of this one yet... but good phase
II results for this drug. I don't see what method this is being given....
injectable? oral? I'm all interested in that aspect of these trials now. "The
randomized, double-blind, placebo-controlled trial showed a significant increase
in the proportion of patients who remained relapse-free over the first 12 months
of treatment with 60 mg per day of MN-166 compared to placebo (p=0.03). The
time to first relapse was also significantly increased in patients treated with
60 mg of MN-166 per day compared to placebo (p=0.04). Positive trends were also
observed in the annualized relapse rate (p=0.08) and number of relapses (p=0.10)
among patients who completed the full first 12 months of treatment with 60 mg
of MN-166 per day compared to those patients completing the first 12 months
of treatment on placebo. "
I called the nice clinical trial folk today at the MS clinic in UBC and signed
up for the Avonex/Fingolimod trial. IM injections here I come! I think if I
thought about it any longer I would bail out because of thinking about the injections.
it sounds like it'll be about 3 weeks or so before the first appointment happens.
I feel like I'm about to start an interesting new chapter in my disease. I'm
excited about it.
So, I heard from Beth in Ottawa
about starting on a slightly different clinical trial for Fingolimod. This trial
is testing Avonex against Fingolimod. So it means that I would take a weekly
injection and a daily oral pill and no possibility of taking nothing. They are
still testing 2 doses (1.25mg and .50mg) so 66% chance of being on the Fingolimod
and only 33% chance of getting the Avonex. I think I would choose this one over
the straight Fingolimod only trial that I was first looking at. So, from a health
perspective at least I would be taking some form of preventitive med and this
trial is one year long. BUT, and the huge but, is that I will have to bite the
bullet and get over my inexplicable aversion to injections. You see, I'm one
of those people. I have for a majority of my life fainted when having to give
blood or get vaccines ect. I even fainted when i got my ears pierced! And yet,
I worked for many years and did my schooling to work in Vet hospitals so I used
to give injections all the time in my daily job! It's rather embarrassing and
pathetic that today as a 30 year old adult I still have this same unreasonable
emotional reaction to the damn needle when it comes to me! Any Avonex folk out
there have any suggetions? Does the emotional reaction to giving yourself an
injection go away over time and practice?