caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Saturday, October 27, 2007
Happy 3 years to me!
Well, well... yesterday marks 3 years since I was officially diagnosed with MS. Brings about a lot of interesting thoughts thinking about the last 3 years. You too right Dave?

I survived what Larry the Lesion decided to bring me. Good on me. I can't say that I believed I could when I was sitting in my house with double vision. now if only I could have my legs back from all this tingling I'll be a happier gal :)

I remember when my doctor talked to me about going on a clinical trial and I was adamant that I wouldn't be a guinea pig to anyone figuring out a new drug. Hmm... thats clearly changed! And I just have to say that I'm loving being on the trial. It's kinda like being in a private clinic with the amount of dedicated care and monitoring of my health. I like knowing that I'm in good hands.

Before I was diagnosed, I knew something was wrong with me. I just didn't know what. Being diagnosed gave me the knowledge I needed to step up and do what I needed to do to get healthier. And for that I'm grateful. I may not know what my path with my MS is, but I can only hope the changes I've made will help my body heal the 20 lesions in my brain and help to hold off any next phase the disease can go.

And now, the leaves outside are calling my name to get them into bags! This time of year is so mean... the lawn mower goes away and now the damn leaves cover the lawn! Tsk.

Friday, October 26, 2007
Acne medicine clears up MS symptoms -Minocycline
Whoa. This could be amazing. It's cheap, could halt progression AND is just a generic oral med?! Wow. Hey, could this be a treatment that could get rid of my acne at the same time as my MS? I'd like both please. I'm 31 and really don't need acne anymore!

"An old-fashioned, inexpensive antibiotic commonly used to clear up pimply faces and bacterial infections is about to be put to the test against multiple sclerosis.

Researchers hope the $4-million study, involving more than 200 people in 13 Canadian cities, will prove minocycline pills can, indeed, help stop the progression of the disease.

Tony Traboulsee, a neurologist at the University of British Columbia MS clinic, said the trial stems from animal research done by a former UBC scientist, V. Wee Yong, showing minocycline - in the tetracycline family of antibiotics - can inhibit the activities of an enzyme and cells that initiate MS attacks and that it has anti-inflammatory action that may shield myelin, the protective sheaf around the nerve fibres of the brain and spinal cord.

University of Calgary, the centre leading the two-year minocycline trial that will begin in January. Yong carried out a previous small trial that showed minocycline significantly decreased brain lesions in MS patients.

Yong and fellow researchers carried out another nine-month trial in which minocycline was combined with an injectable drug called Copaxone. That study, whose patients had more advanced cases of MS, suggested that minocycline is most beneficial at the outset of disease symptoms, when it can actually halt progression.

Participants in this next study, sponsored by the MS Society of Canada, must be referred within 90 days of their first MS symptoms. Anyone who waits longer than that will be excluded.

"The benefits of minocycline are straightforward," said Luanne Metz, principal investigator in the trial and director of the Foothills Hospital MS Clinic in Calgary. "It's relatively cheap ($800 a year compared to other drug treatments that can cost up to $40,000 a year), has few side effects and can be taken in pill format. The aim of our research is to see if this common drug can reduce the occurrence of further disease activity in people who have experienced an initial attack of MS symptoms and who are at high risk of progressing to definite MS."

Metz said that two-thirds of people who get an initial attack of MS symptoms will be diagnosed with MS within six months but if minocycline is used at the outset of symptoms, "we believe we can reduce this number."

Traboulsee, who is on the clinical steering committee for the trial, said while long-term antibiotic use may lead to the development of antibiotic resistance, it is not considered a major concern in the MS trial because the drug is not being used to treat infection.

November 1 - UPDATE... In ALS this is showing very negative results and warnings of caution for testing this med in other neurological diseases is being flagged.

Tuesday, October 23, 2007
Stupid Injection
Okay, I'll be honest with you. My last injection went poorly. Well, not the actual injection part but the "right before stabbing yourself" part. Sigh... I thought I got myself past that part pretty well. Its been weeks and weeks of injections that I could really brag about. I've had family members and friends over to see me do my injection and I did it all within 5 minutes!

This weekend? Ugh. I sat hovering from 2:10 to finally getting the stab done at 2:51. It was torture in my own head for NO reason! I don't really know why I couldn't just stick the damn needle in. I don't know if it was because I still had bruising in that thigh that I could see and was afraid to hit a vein going in again? Or that I thought it would hurt more than it does? Or that I just really don't want to be injecting myself for any reason regardless of the possible benefit? It's unexplainable but what I know I did do, is make a big spectacle out of doing my injection which I promised myself I wouldn't do when I started on this trial. Most disappointing. Next weekend I think I'll need to do the injection in front of someone again so I won't stall like that. It seems to work better that way some how. 21 injections done, 31 more to go.

Monday, October 22, 2007
Fingolimod news!
Saving the best news for last ;) As you all know, I could be on Fingolimod (FTY720) right now so I'm particularly interested in what results are showing from the trials on this drug. So, the latest results are showing possible myelin repair! Woo hoo!! Yes please!

"EAST HANOVER, NJ, October 12, 2007- New preclinical data presented at European Committee for Treatment and Research of Multiple Sclerosis (ECTRIMS) in Prague suggests that FTY720 (fingolimod) directly reduces neurodegeneration and enhances repair of the central nervous system (CNS) damage caused by multiple sclerosis (MS) by interacting with sphingosine-1-phosphate receptors (S1P-R) expressed on brain cells. This mechanism of action may be in addition to the established anti-inflammatory role of FTY720 that is mediated by the reduction of inflammatory immune cells, called lymphocytes, from reaching the brain.

FTY720 is a novel, once-daily, oral treatment currently in worldwide Phase III clinical development to test its safety and efficacy as a disease modifying therapy for relapsing-remitting MS, which affects approximately 85% of people with multiple sclerosis.

The potential direct beneficial effect of FTY720 in the CNS is supported by the results of several preclinical experiments being presented at ECTRIMS, including research in animal models of MS and in vitro studies on CNS cells called oligodendrocytes.

In an animal model of MS (experimental autoimmune encephalomyelitis in rats), the administration of FTY720 directly into the CNS resulted in a statistically significant reduction in disease severity. This decrease in disease activity was seen in the absence of a reduction of lymphocytes in the bloodstream, suggesting that the favorable effect of FTY720 seen in this model is due to a direct effect in the CNS that is independent of the effects on peripheral lymphocytes.

In two experiments presented at ECTRIMS, the modulation of S1P-R by the addition of FTY720 resulted in an increase in the number, growth and survival of oligodendrocytes in cell culture. This effect of FTY720 on oligodendrocytes may help limit destruction of myelin and promote its repair and, thus, may contribute to the effectiveness of FTY720 in MS. Oligodendrocytes are cells in the CNS that make a fatty tissue, called myelin, which is necessary for normal signal transfer along nerve fibers in the CNS. Myelin and oligodendrocytes are typically damaged in MS.

"FTY720 crosses the blood-brain barrier and the drug's target - S1P receptors - are present on brain cells, including oligodendrocytes as shown in animal cell studies," said Jack Antel, Professor, Department of Neurology and Neurosurgery, McGill University, Montreal, Canada. "We are able to confirm that FTY720 directly modulates the S1P receptors on human oligodendrocyte progenitor cells."

FTY720 is currently being investigated in the largest worldwide Phase III clinical trial program to be conducted in MS to evaluate further its efficacy and safety as a disease modifying therapy for relapsing-remitting MS. This comprehensive program includes trials referred to as FREEDOMS, FREEDOMS II and TRANSFORMS. Recruitment is complete for FREEDOMS and TRANSFORMS. Recruitment is ongoing and on track for FREEDOMS II and FTY720 regulatory filing is planned for the second half of 2009. For more information about the clinical trial program, including eligibility criteria and location of U.S. study sites, patients can call the following toll-free number: 866-788-3930, or visit

Smoking makes MS worse!

Listen up smokers! This study shows that smoking increases your degree of disability. Wow. Glad I quit 8 years ago now.

"Regarding smoking history 128 participants had smoked: 96 were active smokers who had smoked more than 10 cigarettes-per-day in the three months prior to the study start, and 32 were former smokers who had smoked cumulatively for at least 6 months sometime in the past. Two hundred and forty (240) participants were not active smokers.

Whe MRIs from smokers and nonsmokers were compared it was found that smokers had significantly higher disability scores and lower brain volume than the nonsmokers.

Also, it was observed that a significant relationship exists between a higher number of packs-per-day smoked and lower volume of the brain.

Zivadinov said, "MS patients should be counseled to stop smoking, or at least to cut down so they can preserve as much brain function as possible."

Prozac is making its way in the MS world?

Huh? This is so surprising to me, although I suppose it shouldn't be. Older drugs are being found to have new treatment life all over the place, but Prozac(fluoxetine)? Interesting. Might be nice to live with less progression of your MS and be happy too, no? ;)

"There were trends in favor of fluoxetine for cumulative volume of new Gd-enhancing lesions (median, 77 vs 22 mm3; P =.16), change in T2 lesion load (median, 475 vs 128; P =.10), and scans showing Gd-enhancing lesions (33 vs 22; P =.06). Significant benefit for fluoxetine was reached for scans showing new Gd-enhancing lesions (31 vs 19; P =.04).

"It is interesting to note that it takes several weeks for plasma levels of fluoxetine to stabilize," Dr. Mostert said. This was seen on reanalysis of the last 16 weeks (2 scans) of the secondary outcome trends. Here, the cumulative number of new Gd-enhancing lesions almost reached significance (3.16 vs 1.21; P =.05), and significance was reached for both the number of patients with no new Gd-enhancing lesions (5 vs 12; P =.02) and the scans showing Gd-enhancing lesions (18 vs 9; P =.0).

Thus, while indicating that their small sample size was the main limitation of the study, Dr. Mostert noted the good tolerability of fluoxetine, the beneficial trends associated with its use, and the delay in their significance that matched with the known delay in stabilization of fluoxetine plasma levels.

In considering in particular the characteristics of fluoxetine as an oral agent that is affordable, well tolerated, and not known to have any long-term adverse effects, Dr. Mostert indicated that further studies on this agent are justified.

Alemtuzumab VS. Rebif - Who wins?

3 Year results are coming in on Alemtuzumab. How the heck do you even say that drug name!? Ha! And I thought Fingolimod was a mouth full! It's common name is Campath for those that are curious. Either way, this drug wins over Rebif.

"Overall efficacy results demonstrate that alemtuzumab provides a significant treatment effect that has been found to last three years among patients in the study. Analysis of the first co-primary endpoint showed that patients taking alemtuzumab experienced at least a 73 percent reduction in the risk for relapse after three years of follow up when compared to patients treated with interferon beta-1a. This difference was highly statistically significant in favor of the alemtuzumab patients with a p-value less than the pre-specified value (p=0.00396) assigned for the three-year analysis.

Analysis of the other co-primary endpoint showed that patients taking alemtuzumab experienced at least a 70 percent reduction in the risk for progression of clinically significant disability when compared to patients treated with interferon beta-1a. This difference was statistically significant in favor of the alemtuzumab patients with a p-value less than the pre-specified value (p=0.01646) assigned for the three-year analysis."

Disappointed in the government today

I just read this posting where an expert panel is recommending that provinces don't cover the treatment costs of Sativex or Tysabri for MS folks. You know, if my doctor (who I might add is the best person to decide what is best for my health) is prescribing me a medication that makes me less likely to keep accessing healthcare, why is this being recommended by these experts? Argh.

"TORONTO - An expert panel's advice that provinces and territories not cover the cost of two Multiple Sclerosis drugs creates a system of two-tiered care, MS advocates say.

They view the recommendation as leaving people with the disease, who don't have private drug insurance, unable to afford medication that could slow progression of the condition and ease the pain they suffer.

Late last month, the Common Drug Review advised that governments not put the MS pain medication Sativex on the list of medicines that provincial and territorial drug plans cover for eligible people. That follows a "do not list" recommendation issued in the spring for Tysabri, a drug that slows progression of the disease.

Those decisions put these drugs out of reach for many people with MS, an expert and a spokesperson for the MS Society argue.

"It's frustrating, because as an MS doctor, I would like my patients that are on public assistance to have the same access to MS treatments as patients with private drug plans," says Dr. Paul O'Connor, head of the MS clinic at Toronto's St. Michael's Hospital.

"And they most certainly do not."

Private insurance programs, which are generally provided as an employment benefit, may cover the costs of the medications for people with MS who have drug coverage. But the reality of MS is that the progressive and debilitating nature of the disease robs many people with it of the ability to hold down a job.

"We're talking about a population that has challenges staying in the workplace, has challenges in terms of maintaining their status on private insurance," says Jon Temme, vice-president of research for the Multiple Sclerosis Society of Canada.

"Because the nature of the disease is such that over time and with the disease progressing a significant number of people - we estimate up to 80 per cent - are unable to work full time."

"Anything that keeps (medication) options away from them is of concern to us."

Treosulfan Effective for SPMS

I love seeing news of treatments for the more advanced phases of our lovely disease.

"A total of 21 patients with confirmed SPMS participated in the study, divided according to the safety (n = 11) and efficacy (n = 20) sets. These patients were in a phase of secondary progression of the disease, as seen from the mean duration of SPMS of 4.3 and 4.6 years, respectively. Their mean MS durations since the first manifestation were 16.6 and 17.2 years, respectively, and they were still under active disease according to the number of attacks they had in the previous year (means, 1.4 and 1.4, respectively). Their mean EDSS scores were 4.95 and 5.05, respectively.

"All of the patients either stabilized or even improved over the observation period of 1 year," Dr Wiendl indicated. The annual relapse rate of 1.5 prior to study entry decreased significantly to 0 by the end of the study year (P <.016).

Within the MRI analyses, there was a trend for a reduction in Gd-enhancing lesions, although, as Dr. Wiendl said, "What we saw by the end of this study was that some of these patients seemed to be having recurring activity, which could be an indication that the 3-monthly maintenance pulses are not sufficient to be anti-inflammatory."

Therefore, the researchers concluded that not only was treosulfan safe and well tolerated, but nine of the 11 patients remained on treosulfan for the complete study period, during which they showed clinical stabilization or improvements, as judged by their EDSS and MSFC scores. Furthermore, no clinical relapses were seen during the treatment period, and the mean numbers and volumes of their T2 and T1 lesions did not change during the year of treatment.

These results have thus moved things forward with the establishing of a randomized phase 2 study, which is currently in recruitment, Dr. Wiendl said."

Thursday, October 18, 2007
An Urban Planner with MS perhaps?
Click here and tell me if you think this Urban Planner perhaps has MS? ;)

Where am I?

Hi everyone, and welcome to the new site for my blog. A HUGE thanks to Heather for helping me so much with all the improvements!

So, I'm heading into my 5th month on the clinical trial. Any time I talk about the trial with folks they ask if I can figure out what I'm on. And 5 months into it... nope. I really can't! I really don't have any symptoms other than those that have continued from the start of my latest attck in August. But from a side effects perspective, I have bruising from time to time from the injection. And thats about it! Cool. I do hope I'm on Fingolimod though. Either dose will do. There's some more great news releases that have come out on it that I'll post about that make me happy to be in this trial.

I'm seeing that ECTRIMS is happening right now in Prague too and there's always some big news releases about potential research findings so I think I have a whole lot of reading to catch up on! Thank god the start of my weekend is almost here. 6 hours and counting. My fatigue these days is almost unbearable so I'm grateful for being able to sleep in tomorrow.

Tuesday, October 16, 2007
The dust is settling.
Whew. Been busy getting my blog settled into a new domain. You'll notice that the archived posts are lumped together for 2004 to 2006, and then gradually spread out for 2007.