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Confirmed. Medical Marijuana Helps MS Spasticity.

2012-05-15T22:54:23Z

I'll admit, I found it a little weird to see this all over the news of the multiple sclerosis world. I kind of thought we already pretty much knew that marijuana helped with certain MS symptoms.

I guess the big news here is that this was a well-run, rigorous (albeit small) study. In this study, published in the Canadian Medical Association Journal, researchers used a crossover design - 30 people smoked either a marijuana cigarette (joint) or a placebo (that looked, tasted and smelled just like the real deal, but lacked active ingredients) once a day for 3 days in a row. Then they switched to the other (marijuana or placebo) for 3 days. It should be noted that these 30 participants were people who had MS-related spasticity and had failed to respond to other treatments.

Here is what researchers found:

Participants saw a 30 percent improvement in measures of spasticity after smoking the marijuana, but not after the placebo.
Smoking marijuana significantly reduced pain scores (by 5.28 points on a visual analog scale) over placebo.
Smoking the marijuana caused fatigue and dizziness and slowed down cognitive function soon after smoking.

In reading some of the articles written about the study, I noticed that people seemed very concerned about the side effects of marijuana. I understand that. People with MS have plenty of fatigue and cognitive stuff going on and no one seems to know if the effects of marijuana are long-term. It would be great to see a formulation that contained THC, but had none of the side effects, especially if this would make it easier and more palatable for docs to prescribe.

However, plenty of the drugs that we take for symptoms have crappy side effects, as do some of the disease-modifying therapies. If people with MS don't mind some (more) fatigue and cognitive dysfunction to relieve spasticity, which can be debilitating and painful, they should have a choice to use marijuana. If feeling a little high helps relieve some of their other symptoms, not to mention make the whole MS journey a little easier for a short time, that is a benefit, as well.

I do understand that the establishment has not formally documented the long-term effects of smoking pot on cognition. Studies have looked at "chronic cannabis users" and found that there may be some effect on brain function. While this is clearly an undesirable side effect, people who are suffering from spasticity should be able to make a choice whether they want to take this risk or not. After all, one need only check out the side effect profile for some of the commonly-prescribed anti-spasticity meds to see that these can be "dirty"drugs as well, in terms of side effects. (As a reminder, the participants in this trial had spasticity which failed to respond to these drugs.)

Confirmed. Medical Marijuana Helps MS Spasticity. originally appeared on About.com Multiple Sclerosis on Tuesday, May 15th, 2012 at 22:54:23.

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Have You Been Rejected as a Blood Donor Because of MS?

2012-04-30T23:00:08Z

About 4 years ago, in 2008, I wrote this blog: Can I donate blood if I have multiple sclerosis?

I felt that I was a little late in writing it, as the blood donor eligibility guidelines were updated and released a year earlier, in 2007. These guidelines eliminated MS as a factor which excluded people from being able to donate blood. To state this differently, people with MS could now donate blood. The closest that the guidelines come to discussing MS is under the heading of "Chronic Illnesses," where it is stated: "Most chronic illnesses are acceptable as long as you feel well, the condition is under control, and you meet all other eligibility requirements."

In case you are wondering, people taking any of the disease-modifying therapies can also donate blood.

Since I wrote the original article, I have gotten many emails from people saying that they were rejected as a blood donor, simply because they had MS.

I'm curious - is this still happening? Has this happened to you? What exactly were you told? How did you react?

Share your story in the comment section below.

Have You Been Rejected as a Blood Donor Because of MS? originally appeared on About.com Multiple Sclerosis on Monday, April 30th, 2012 at 23:00:08.

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Ann Romney, Multiple Sclerosis and the Presidential Campaign

2012-04-30T22:47:44Z

I was prepared to really hate this piece about Ann Romney's multiple sclerosis (MS), preparing myself for words like "suffer" and "victim" to be sprinkled throughout the video (after all, this was on Entertainment Tonight). Sure enough, there was suspenseful music and large graphic letters filling the screen, reading "MS ATTACK," preceding the segment where Ann Romney spoke about some increased MS symptoms during the Super Tuesday primaries.

However, after overlooking some of the production aspects of the video, I found that I really, really like Ann Romney. She seemed warm and genuine. I related to her quote: "For people that have MS, there are certain rules that we've got to follow. One is go to bed on time, don't have stress in your life, eat balanced meals every day and, of course, being on the campaign trail none of those things work." Indeed, how many of us with much more "normal" lives can really do these things - even one of them? I cannot imagine what her life has been life these past months. I cannot imagine what her life will be like if her husband is elected president.

I'd love to hear from you about Ann and her portrayal of MS. If you can, put your political beliefs aside and take a good look at this woman who is living with MS. She may just turn into "the face of MS" for the entire country, after all.

Read the article, watch the video and decide for yourself: Ann Romney's Multiple Sclerosis: Will It Limit Her Role In Mitt's Campaign?

Ann Romney, Multiple Sclerosis and the Presidential Campaign originally appeared on About.com Multiple Sclerosis on Monday, April 30th, 2012 at 22:47:44.

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People with MS - Keep Your Intellect Sharp

2012-04-30T17:13:31Z

I know that I am not alone when I say that MS has stolen a great deal from me. I miss lots of stuff because I am tired or am feeling "MSy" in some other way. I also know that I am among the people with MS who have cognitive dysfunction. My brain just doesn't work like it used to. This makes reading books with complicated plots or watching some movies a little more challenging.

As discouraging as this can be at times, I keep with it. I try to push myself to appreciate things that are not necessarily "easy." Don't get me wrong, there are still shows on TV and novels that I enjoy that are not high culture, but I do try to blend in things that make me think.

I encourage you to do the same. I have put together some ideas on things that will open up the world to you and keep you learning. What about you? What do you do to keep yourself engaged with the world (and with your own brain)? Share your ideas in the comment section below.

Read the full article: Stay Intellectually "Healthy" with Multiple Sclerosis

People with MS - Keep Your Intellect Sharp originally appeared on About.com Multiple Sclerosis on Monday, April 30th, 2012 at 17:13:31.

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People with MS - Don't Neglect Your Social Health!

2012-04-30T16:37:32Z

I am guilty of letting lots of time pass without reaching out and talking to friends or family members. Often, it is only when there is a compelling reason to get in touch - weddings, babies, funerals, illnesses - that I see these people whom I care for so much.

In fact, I just came from a memorial service today for the mother of a dear friend that I have known since we were freshmen in high school. As I stood there with my group of old pals, I realize that time was passing and I was missing out on things - things that were happening with them and sharing the things that were happening with me. Some of them live in town and I don't see them outside of these sorts of occasions.

I am going to resolve to make an effort to communicate with "my people" more often. How about you?

Read the full article: Stay Social "Healthy" with Multiple Sclerosis

People with MS - Don't Neglect Your Social Health! originally appeared on About.com Multiple Sclerosis on Monday, April 30th, 2012 at 16:37:32.

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Q. What is a "double dummy" trial?

2012-04-30T14:16:51Z

A. "Double dummy" refers to the type of placebo that is used in a randomized, blinded clinical trial.

In a double dummy trial, there are usually two placebos. This is necessary when the drugs are administered by different routes (injection and pill, for example) or by different protocol (once a day vs. weekly dosing). In order to keep participants from knowing which treatment arm they are in, they usually take one active drug and one of the placebos.

An example is the TRANSFORMS trial, which compared Gilenya (fingolimod) to Avonex. Gilenya is an oral therapy, which is taken daily, while Avonex is a weekly intermuscular injection. In this trial, patients had to take a daily tablet AND inject themselves weekly. For the people who were in the Avonex arm, the "Gilenya" tablets they took were actually a placebo. The people in the Gilenya arm were giving themselves placebo injections.

Q. What is a "double dummy" trial? originally appeared on About.com Multiple Sclerosis on Monday, April 30th, 2012 at 14:16:51.

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CombiRx Results In: No Benefit to Combining Avonex and Copaxone

2012-04-28T22:13:09Z

I've been watching the CombiRx trial since I started taking Copaxone in 2005. It seems logical, doesn't it - if Copaxone works to prevent relapses, and Avonex works to prevent relapses, and they each have different mechanisms of action, then shouldn't taking both at the same time result in even better results in terms of relapse prevention?

Looks like the answer is "not necessarily."

Researchers in the CombiRx trial enrolled 1008 people with relapsing-remitting MS from 2005-09 and followed them for three years. People were assigned to take either: 1) Copaxone and Avonex together, 2) Copaxone alone or 3) Avonex alone. The study was a double-dummy design, so no one knew what treatment arm they had been assigned to. The drugs were taken as they usually are: Copaxone as a daily subcutaneous injection and Avonex as a weekly intermuscular injection.

Here is what the data showed:

The annualized relapse rate (ARR) for the combination of Copaxone and Avonex was 0.12
ARR for Copaxone alone was 0.11
ARR for Avonex alone was 0.16
About the same percentage of people in each treatment arm had a relapse in the 3 years of the trial: 23.1% - Copaxone and Avonex together; 20.5% - Copaxone alone; 26.0% - Avonex alone.

These results were similar across outcome measures - time to first relapse, disability progression and most MRI measures showed no benefit to the combination. There were some notable benefits to the combination around brain volume and lesion count, however.

Bottom line: I find this very interesting. I really don't know why there was not more of a benefit to the combination - as I said, it seems logical to assume there would be. I'm a little relieved, from a selfish perspective. It would be hard to make a choice to add a drug in if there was a slight benefit, but one would always wonder.

What I am encouraged by are the ARRs for all the treatment arms. These rates for the monotherapies translate to one relapse per 9 years for Copaxone and one relapse per 6.25 years for Avonex. Although I am perfectly aware that these drugs do fail to prevent relapses in some people, I am still happy that they seem to show the benefit that they do for the people that do respond to them.

What do you think of this trial and the results? Share your opinion here in the comment section below.

CombiRx Results In: No Benefit to Combining Avonex and Copaxone originally appeared on About.com Multiple Sclerosis on Saturday, April 28th, 2012 at 22:13:09.

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UPDATED: PML in Gilenya User with Previous Tysabri Exposure

2012-04-23T14:47:45Z

Just ran across this article in the April 13, 2012 Wall Street Journal (a little late): Novartis Gilenya Patient Gets Rare Brain Disease.

Turns out that someone who was using Gilenya got diagnosed with progressive multifocal leukoencephalopathy (PML), the brain disease most associated with use of Tysabri in MS patients (or in people with AIDS). The person had previously been treated with Tysabri.

I have always been under the impression that the PML risk associated with Tysabri went away after stopping the drug, as the immune system returned to normal levels. However, maybe it is possible that it retains some sort of "memory" and certain cells are easily affected again on another drug. I just don't know.

I have not yet been able to find out any details, such as how long the person had taken Tysabri and how long it had been since they had stopped. Nor do I know how many doses of Gilenya this person has taken or what their status is today. This is definitely something to keep an eye on. I would appreciate it if anybody with more details could write into the comments section and share what you know.

UPDATED: I did receive communication from Novartis today that the person who was diagnosed with PML had been taking Tysabri for 3.5 years prior to beginning Gilenya and was JC virus antibody-positive. The risk for PML goes up drastically after a person has been on Tysabri for 2 years (24 infusions) and is JC virus antibody-positive.

I do feel like i need to add a comment of my own about Novartis' conduct in this matter. I do not feel like they are being at all reluctant to share information. From what I can tell, there is simply not that much information to share at this point. I think pretty much anyone would say that the main contributing factor for PML here is Tysabri, but if and how subsequent Gilenya doses somehow interacted with a Tysabri-exposed immune system is the question. It could only benefit Novartis to figure this out as soon as possible and communicate their findings.

Cognitive Dysfunction Stories from Readers

2012-03-31T22:14:40Z

I was reading through these tonight and some of them really made me smile. Not because they are funny - far from it. These are stories about people forgetting things, acquaintances, directions, and how to do stuff they do every day.

What warmed my heart and brought a smile to my face is the fact that people were willing to share their stories in a public forum with strangers. Most of these stories could be construed as embarrassing, but putting them out there to be read by other people with MS does not elicit feelings of shame. Instead, revealing incidents that have to do with cognitive dysfunction and the deep emotions that accompany the reality that MS steals some of our ability to think as clearly and quickly as we used to - this helps people heal, helps them past the idea that this is in any way any of our faults.

I know that being able to talk or write about the things that happen to me as part of this disease, without any fear of judgement or ridicule, makes it easier to endure the hard times.

Take a look at these stories and add one of your own. You may help someone who is feeling alone with their cognitive dysfunction.

Read the full stories: Readers Respond: What is your scariest, funniest or most annoying cognitive dysfunction moment?

Relapse vs. Paroxysmal Symptoms vs. Pseudoexacerbations

2012-03-31T21:56:45Z

Anyone with relapsing-remitting MS (RRMS) knows the feeling of wondering if some symptom or another signals a relapse or is just one of those freaky MS occurrences that will pass quickly (or at least not be as dramatic).

I wanted to direct your attention to some articles that I have written in the past that will help you figure out whether you are headed for Solu-Medrol to shorten the duration of a relapse or whether you probably will have forgotten all about whatever weird symptom acted up in that moment. Don't forget that we (in the Northern hemisphere) are heading into warmer weather, which can also bring out some lurking symptoms in the form of pseudoexacerbations.

Read the full articles:

Relapse vs. Paroxysmal Symptoms vs. Pseudoexacerbations originally appeared on About.com Multiple Sclerosis on Saturday, March 31st, 2012 at 21:56:45.

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