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Often Overlooked Symptoms of MS

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Respiratory Problems as a Symptom of MS

These MS symptoms can be so vague or assumed to have other causes that they often go untreated. They are real. You can get help.

More Overlooked Symptoms

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Solu-Medrol: The Good, The Bad and The Ugly

Solu-Medrol

Many of us with multiple sclerosis (MS) have taken the Solu-Medrol "journey." While the benefits can seem miraculous in terms of resolving symptoms, the treatment can have a dark side. Learn from others, share your tips and have a better "ride."

More on Solu-Medrol

Multiple Sclerosis Spotlight10

Newsletter About MS Treatment with UpToDate

Wednesday May 4, 2011

I am just letting everyone know that the next UpToDate newsletter, coming your way May 5th, will be covering treatments for relapsing remitting multiple sclerosis (RRMS), including the newest drug, Gilenya (fingolimod).

Read the original blog post below to learn how to sign up:

I am pretty excited about this. About.com and UpToDate are trying out a partnership to bring more information about multiple sclerosis (MS) to people living with the disease and those who care about them in the form of a monthly newsletter about MS.

While the stuff on my site - ms.about.com - is written specifically for people trying to cope with MS in their daily lives, the information on UpToDate is written for doctors. In fact, this is the source that many doctors refer to when they are looking for specific recommendations about diagnosing and treating particular conditions. By giving people with MS access to some of these articles, we now can see what our doc (and others) are looking for and what they are trying to achieve when confronted with different symptoms and situations that we bring to them.

I feel that by taking a look at the same information the doctors are using, we give ourselves additional tools to help with communicating about complicated issues, such as those that surround choice to start or continue a particular MS therapy.

To receive this newsletter, click on this link and follow the instructions: Sign up for the About MS with UpToDate newsletter.

Interferons for MS Do NOT Cause Cancer

Tuesday May 3, 2011

Many of us with a chronic illness such as multiple sclerosis (MS) end up on medications for many, many years. Some of the MS medications have known associations with big diseases, such as progressive multifocal leukoencephalopathy [PML] for Tysabri and leukemia or cardiac damage with Novantrone.

However, for those of us hanging out on the CRAB (Copaxone, Rebif, Avonex, Betaseron) drugs year after year, occasionally one might wonder if perhaps there is some sort of long-term undesirable side effect or association that no one knows about yet.

Well, there is good news for those people on interferons (Rebif, Avonex and Betaseron). A European study examined data from a pooled global database on people using Rebif and found that use of this medication did NOT increase risk of cancer.

As a matter of fact, people who were on Rebif had lower rates of cancer (4.o cases per 1000 patient years) than people on placebos (6.4 cases per 1000 patient years), although this difference was not statistically significant. (What does this mean? Read Q. What Does it Mean When a Research Result is "Statistically Significant"?)

While I wouldn't necessarily switch to an interferon to lower my risk of cancer, I think it's refreshing to be able to bring good news about some of the medications that many of us depend on.

Rebif Exposure During Pregnancy

Tuesday May 3, 2011

Women with multiple sclerosis who want to have a family are usually faced with the difficult decision of stopping disease-modifying therapies for at least a month prior to trying to conceive and for the duration of the pregnancy. However, things happen and sometimes women are pregnant before they stop taking their medications.

A European study followed women who became pregnant while taking Rebif (interferon beta-1a). Of these, 425 cases were included in the data. The average time that the women were pregnant before stopping Rebif was 28 days, with most (86%) stopping at 45 days or less.

Here are the results:

  • 76.2% of these pregnancies resulted in normal live births
  • Four (0.9%) of the babies had congenital anomalies (birth defects)
  • Four (0.9%) of the pregnancies ended with stillbirths
  • Five (1.2%) pregnancies were ectopic
  • 49 (11.5%) of the women miscarried
  • 39 (9.2%) of the women had abortions

These rates of birth defects, stillbirths and miscarriages are not different from the rates in the general population.

Bottom Line: During my pregnancy, I lived in a state of panic that something would go wrong with one or both of my babies (I had twins). I looked for every exposure that I might have had and would worry for days if I even thought it might have been a problem (I once had a major "freak out" after biting into an apple that was spoiled inside).

Here's the thing. Pregnancies can go wrong. They just can. In the vast majority of cases, everything turns out all right. In the cases where it doesn't go as expected, there is usually nothing that the woman did or didn't do that caused the problem.

While this fact doesn't fix the sadness in the case that something does go wrong, it may help people relax just a little during their pregnancies if they end up on meds and pregnant at the same time. Although I ended up with healthy twins, I do regret that I didn't get to enjoy my pregnancy more, as consumed as I was with what might go wrong.

Although the study just looked at Rebif, this gives me hope that the other interferons (Avonex and Betaseron) would have a similar safety profile.

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Sativex Makes Progress Worldwide, Including in US

Tuesday April 26, 2011

Sativex is a drug that contains two main compounds derived from marijuana, the cannabinoids cannabidiol (CBD) and delta-9 tetrahydrocannabinol (THC). It controls involuntary muscle movements in people with multiple sclerosis (MS). It also has been shown to help with MS-related pain, spasticity and bladder dysfunction. It is sprayed into the mouth.

Sativex is currently in a Phase III trial in the US for treatment of cancer pain, which is a necessary step for receiving FDA approval.  Once FDA approval is received for Sativex, it can be used off-label to help people with MS. (For more information on how this works, read What is "off-label" use of drugs and is it legal?)

Sativex is currently approved in the UK, Spain, Czech Republic, Canada and New Zealand as a treatment of multiple sclerosis spasticity.

The US license to Sativex is held by Otsuka Pharmaceutical Co. Ltd in the United States and to Bayer HealthCare AG in the UK and Canada. GW Pharmaceuticals has signed a deal to have Novartis (makers of Gilenya) market Sativex in parts of Asia, the Middle East, Australia, New Zealand and Africa, so is moving ahead in those markets.

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