MS News That Caught My Eye Last Week: COVID-19 and Flares, Hiding MS Status, Blood Proteins, Tysabri
#AANAM – COVID-19 Often Leads to Flares in MS Patients, Survey Finds
I’ve read more than a few social media posts from people with MS who are concerned that the COVID-19 vaccines will cause a flare. National MS Association guidelines say the vaccines may cause a temporary, mild fever that may trigger a pseudo-flare, but the flare will ease when the fever does.
On the other hand, this survey, reported at the American Academy of Neurology meeting, indicates that COVID-19 itself is likely to worsen MS symptoms. More than half of MS patients who developed COVID-19 experienced an exacerbation after they were infected. Those taking a disease-modifying therapy, however, were significantly less likely to experience new symptoms after COVID-19.
It’s more evidence that getting vaccinated against COVID-19 is a good idea for people with MS.
The majority of people with multiple sclerosis (MS) experience new or worsening symptoms after developing COVID-19, a patient survey indicates.
These findings also suggest that MS patients who are physically disabled or struggle with anxiety or depression are less likely to fully recover from COVID-19.
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One-third of Patients in the UK Hid MS Status, Poll Finds
I’m not surprised at this information, but I am disappointed. Though it’s not an easy thing to do, and it’s not always the right thing, I’ve found that being upfront about my MS — with family, friends, and co-workers — almost always had a positive result. People can’t begin to understand what our hidden disease is all about, and the problems we must face, unless they know that we’re ill. What’s been your experience?
An MS Society survey found that about one-third of people with multiple sclerosis (MS) in the U.K. have kept their condition hidden from their partner, family members, employer, or work colleagues.
To help mark MS Awareness Week, observed in the U.K. April 19–25, the nonprofit organization released results from a poll of 800 MS patients about barriers to making their health status known.
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#AANAM – Measuring Blood Proteins Could Predict Disability in SPMS
Here’s another report from researchers who think the level of certain blood proteins may predict how quickly MS progresses. For example, they found that the time to becoming wheelchair-dependent for people with nonactive SPMS was significantly shorter among people who had high levels of the NfL and GFAP proteins. The researchers think knowing this will allow doctors to target treatment at a time when it could be most effective for delaying further MS progression.
Among people with secondary progressive multiple sclerosis (SPMS) without active disease, high blood levels of the proteins neurofilament light chain, known as NfL, and glial fibrillary acidic protein, or GFAP, are associated with an increased risk of worsening disability, new research shows.
The findings were presented at the 2021 annual meeting of the American Academy of Neurology, in a talk titled “Plasma Neurofilament Light Chain and Glial Fibrillary Acidic Protein Levels Are Prognostic of Disability Worsening: A Biosignature That Helps Differentiating Active From Non-active SPMS.”
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#AANAM – Tysabri Improves Quality of Life, Can Reduce Infection Risk
If you read my column regularly, you know that I was treated with Tysabri for about seven years. You may also know that my treatments were reduced from monthly to every eight weeks after about five years, and that I think the medication helped me. This study indicates my neurologist knew what she was doing in prescribing Tysabri for me and in the treatment protocol she followed.
Treatment with Tysabri (natalizumab) can improve mental and social health in people with multiple sclerosis (MS), according to new data presented at the 2021 virtual American Academy of Neurology annual meeting (AANAM).
Data presented at AANAM also indicate that less frequent dosing of Tysabri can reduce the risk of rare brain infections, while still lowering MS disease activity.
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Msintheus
We shouldn’t direct disappointment at people with MS for hiding their experience. While the author is lucky their experience was positive after disclosure I can tell you my experience has been predominantly negative. I hide the info from most and based on responses wish I had hidden it more.