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It's that time of year again....
The Myasthenia Gravis Association
of British Columbia in collaboration with the Neuromuscular Disease Unit at Vancouver Hospital will be presenting
a Myasthenia Gravis Information Day "After the Diagnosis" on Saturday, October 31st at the Diamond Health Care Centre
2775 Laurel Street in Vancouver from 8:30am to 2:00pm. There will be Neurologists speaking on MG and the Immune System,
medication and treatments of MG, research into MG and a panel of MG patients talking about their experiences and sharing some
lifestyle advice about living with Myasthenia Gravis.
As there is limited seating and a lunch will be served, you must pre-register before October
15th. There is a small fee for the event as coffee and a lunch will be served.
Notes from Last years AGM:
The 50th Anniversary meeting of the MGABC was well attended by over 100 people. Special thanks to Brenda
Kelsey and Judy Bonney and their team of talented workers that made this a special meeting.
The
North Island group made two generous donations; $200 to the MGABC and $500 to Dr. Gillian Gibson at the Neuromuscular Diseases
Unit at Vancouver General Hospital.
The planned guest speaker was unable to attend due a family emergency, so Dr. Gibson
graciously stepped in and gave the presentation on IVIG. Here's my notes from that presentation: Notes from the 50th Anniversary Meeting of the
MGABC Guest Speaker Dr. Gillian Gibson. She spoke about IV IG·
IG is produced to fight disease, they are antibodies
and antibodies are proteins. IgG is the antibody for the AChR. IgA is involved with mucous diseases, IgE is involved with
allergies, and there is also IgD & IgM.· 85% of Mg patients are AChR positive, of the 15% that are not AChR positive,
30% of that 15% are MuSK positive, leaving 70% of the negative 15% having unknown antibodies.·
IVIG itself doesn’t treat the symptoms. IVIG
is 98% IgG from 200-1000 donors for each dose. It works by 1) the IgG antibodies bind to the AChR antibodies in the body,
therefore the AChR antibody’s are in effect removed, and 2) IgG decreases the production of more antibodies.·
IVIG and Plasma exchange have the same efficacy. Both
are short term treatments. The ½ life of IVIG is ~3 weeks.·
IVIG is safer to give than plasma exchange. IVIG you
can give at any hospital but plasma exchange only available at VGH.·
IVIG costs about $70/gm, typical loading dose is 2
gms/kg so for 70 kg (150lb) person cost is $9,800 with a maintenance dose costing $4,900.·
There’s 3 different brands; Gamaguard, Gamunex
and the Canadian Blood Services brand. Gamunex is the newest, made by Bayer in the USA, it’s more concentrated, so it can be given faster.
It’s possible to develop an allergy to one brand and not to another. The trend is to move to giving more Gamunex.
The dose is most effective if given over 1-2 days, and decreases if given over 5 or more days.·
80% of MG patients have thymic pathology, of those,
75% have hyperplastic thymus and the other 5% have a tumour. There’s a new antibody that they are looking at that is
very similar to the MuSK antibody called ‘agrin’. · The incidence of MG is 3/2 for females to males, with females being diagnosed between 20-40 y.o.
and males between 60-80 y.o.
The silent auction was great fun, and I'm looking forward to my ride on a Harley!
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Well, when we get a newsletter, we'll put it here. We have high hopes! 
As soon as the next issue of our newsletter is complete, it will be added to this section here. Each newsletter
will include latest news, interesting facts, upcoming events, and member names.
We are always looking for new ideas
and topics for the monthly newsletter. If you have an idea or would be interested in writing an article, please let us know.
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