Georgia State Chapter Newsletter

 

Spring 2008

 

 

 

 

 

Myasthenia Gravis Foundation of America





SLU Researchers Restore Muscle Strength



INSIDE

SLU Researchers Show How to Stop Muscle Weakness Caused by Myasthenia Gravis

Problem with IMPAX/Global brand generic Mestinon

New Treatment Boosts Muscle in Myasthenia Gravis

Tribute to John Newsome-Davis, CBE, FRS

Have you lost your glasses?

REMEMBRANCES

 

 

SLU Researchers Show How to Stop Muscle Weakness Caused by Myasthenia Gravis



Severe muscle weakness caused by Myasthenia Gravis - a highly debilitating autoimmune disorder - can be prevented or reversed by blocking a key step in the immune response that brings on the disease, researchers at the Saint Louis University School of Medicine have found.

Myasthenia Gravis, which affects about 120,000 Americans, is caused when the immune system produces antibodies that attack and damage acetylcholine receptors, which are mechanisms that play a key role in transmitting the electrical impulses that cause muscles to move and contract.

The immune response at the heart of this process is called a complement cascade - a complex chain of chemical reactions in which proteins bind together to attack a cell by punching a hole in it. When acetylcholine receptors are damaged in this way, muscle movement is severely impaired.

Using an animal model, the SLU scientists found they could prevent muscle weakness, or restore muscle strength, caused by Myasthenia Gravis by stopping the complement cascade at a step called C5 - before the series of chemical reactions had finished. They did this by administering an anti-CS agent, which targets one of the proteins involved in the cascade and thus stops the process.

The researchers' findings are published in a recent edition of the Journal of Immunology (http://www.jimmunol.org/cgi/reprint-l79/12/8562)

Henry J. Kaminski, M.D.,* professor and chairman of the department of neurology and psychiatry at the Saint Louis University School of Medicine, one of the study's authors, said the findings are promising enough that human clinical trials involving the anti-05 agent - called eculizumab - are likely within a year.

"We believe this therapeutic approach has strong potential for improving the lives of patients with Myasthenia Gravis," Kaminski said. "And if it proves successful there, it could also one day help us find new therapies for other auto-immune disorders, such as rheumatoid arthritis and lupus."

In addition to Kaminski, the study's authors include Yuefang Zhou, Ph.D., and Bendi Gong, Ph.D., both of Saint Louis University; M. Edward Medof, M.D., and Feng Lin, Ph.D., both of the Institute of Pathology at Case Western Reserve University in Cleveland; and Russell Rother, Ph.D., of Alexion Pharmaceuticals in Cheshire, Conn.

The research was supported by grants from the National Institutes of Health.



* National MG Medical/Scientific Advisory Board Member

AMPS: MGF of Illinois




Problem with IMPAX/Global brand generic Mestinon

It appears that a number of people around the country have been experiencing a problem with their pyridostigmine bromide (generic Mestinon) tablets disintegrating rather quickly when placed in their pill boxes, even with the use of desiccants. "Global" appears to have replaced the Generic "Watson" brand in many of the pharmacies around the country. According to one pharmacist, it is the least expensive generic for them
to buy, despite the fact that there are others; e.g., Corepharma(Sandoz), Oceanside(Watson), and others.
If you are experiencing the above complaint with your IMPAX/Global brand pyridostigmine tablets, please follow the complaint process listed below.


1. File a complaint with the FDA at .">www.fda.gov/medwatch

 .


2. Contact your pharmacy and advise the pharmacist of the problem.


3. Contact Ms Nenita Erni at "IMPAX/Global. Her phone number is (215) 289-2220 Ext. 1733. Have the "LOT #" when you call Ms. Erni. This is VERY important. Having the lot number is the only way IMPAX/Global can hunt down the problem. The lot number can be found printed in black on the original white plastic bottle. It may be buried under the label the pharmacist glues on the bottle.


4. Alert Mat Spaan at mspaan@nonprofitsolutions.com or 1-800-541-5454 at the MGFA National Headquarters. Mat is keeping "score." It is too early to tell whether or not the problem is just one lot, or whether it's a total production issue. Until the problem is solved, you may request another brand at your pharmacy. IMPAX Laboratories has suggested that patients keep their tablets in the original bottle.


 


New Treatment Boosts Muscle in Myasthenia Gravis


Science Daily (Aug. 20, 2007)-A new type of treatment significantly reduces the severity of muscle weakness in myasthenia gravis (MG), giving hope for a new class of drugs to treat neurological disorders, according to a recent study.

The drug, oral EN 101 antisense, inhibits the production of acetylcholine esterase, which is an important enzyme in the function of the neuromuscular junction, where nerves connect with muscles. Antisense is a synthetic, short segment of DNA that locks onto a strand of mRNA and blocks production of specific proteins.

This is the first time we've been able to show that antisense is effective and safe when taken orally for a neurological disease," said study author Zohar Argov, MD, with Hadassah Hebrew University Medical Center in Jerusalem and member of the American Academy of Neurology. "Oral delivery of antisense has long been sought after since it is expected to improve patient compliance because daily injections won't be needed." People with myasthenia gravis have increased fatigue and reduced strength in their voluntary muscles. Symptoms may also include a drooping eyelid, double vision, difficulty in swallowing, or slurred speech. Myasthenia gravis is believed to affect 20 out of every 100,000 people.

For the study, 16 people with Myasthenia gravis were given daily doses of oral EN 101 antisense for four days and monitored for one month. Four of the people later took the drug for a month. The study found that oral antisense reduced disease severity by an average of 46 percent, with patients experiencing improved muscle function, improved swallowing time and the disappearance of a drooping eyelid. Side effects reported during the study were dryness of eyes and mouth.

Experts say this discovery may have implications beyond Myasthenia gravis. "Oral antisense may become another mode of therapy in neuromuscular disease and further study is needed," said Argov. However, these preliminary results should be evaluated with caution since this was an open label study."


American Academy of Neurology (2007, August 20). New Treatment Boosts Muscle Function

In Myasthenia Gravis. Science Daily.

http://www.sciencedaily.coln/releases/2007/08/070813162521.1 Itl 11

AMPS: MGA of Detroit


 

2008 MGFA Annual Meeting

Milwaukee, Wisconsin

June 12-14




Tribute to John Newsome-Davis, CBE, FRS


John Newsom-Davis died in an automobile accident in Romania on August 24, 2007. During a 40-year career in medicine, Dr. Newsom-Davis made many landmark contributions to the identification, classification, and treatment of autoimmune neurological disorders.

John Michael Newsom-Davis was his parents' first child, born 10 minutes before his

twin sister, Julia. He attended prep school in England, followed by two years of national service in the Royal Air Force, flying Meteor jets. Experiences as a fighter pilot remained a source of pride and of stories throughout his life. He entered Cambridge University in 1954, received a BA degree in Natural Sciences, and qualified as a doctor at Middlesex Hospital in 1960, earning his MD in 1966. He was a house physician at the National Hospital for Neurology and Neurosurgery (Queen Square) from 1966-1968, and then moved to New York to train with Dr. Fred Plum, continuing earlier investigations into the physiology and neural control of breathing.

He returned to Queen Square and Royal Free Hospital as a consultant neurologist, establishing an active research group. In 1987, he was recruited to Oxford University as the Ac-

tion Research Chair of Clinical Neurology, bringing several colleagues with him from London. Notable contributions from work with London and Oxford colleagues (Anthony Pinching, Keith Peters, Alastair Compston, Richard Batchelor, and Angela Vincent, among others) include the dramatic effect of plasmapheresis in myasthenia gravis, pathogenic effects of antibodies to the acetylcholine receptor, characterization of antibodies to voltage-gated calcium channels in Lambert-Eaton myasthenic syndrome and to voltage-gated potassium channels in acquired neuromyotonia and other forms of peripheral nerve hyperexcitability, and the recent discovery of antibodies to muscle-specific tyrosine kinase in a large proportion of seronegative MG patients.

Although officially retired in 1998, Dr. Newsom-Davis remained active in both clinical

and research arenas. He was editor-in-chief of Brain until 2004 and, at the time of his death, was leading the international effort to conduct a randomized, controlled study of thymectomy in non-thymomatous MG. This National Institute of Health supported study is actively recruiting patients at more than 80 sites worldwide.

Highlights among his many honors include Fellow of the Royal Society, foreign membership in the Institute of Medicine and National Academy of Sciences (US), president of the Biomedical Section of the British Association of the Advancement of Science, president of the Association of British Neurologists, and Commander of the British Empire. He traveled extensively and was widely recognized as a superb lecturer. He will be remembered for pairing boundless energy and

enthusiasm with genuine warmth and concern for colleagues and students, a great sense of humility, and his devotion to family, classical music, and good wine.

Dr. Newsom-Davis is survived by his wife of 44

years, Rosemary (who is recovering from the accident), three children, and seven grandchildren.


By Donald B. Sanders, MD

Source: MGFA News for Chapters, 9/2007

Have you lost your glasses?

A pair of eyeglasses were left behind at the last chapter meeting. If you think they might be yours, contact Gayle at 770-434-1501.

 

REMEMBRANCES


In Memory of:                                By:

Dick George                                                 Jeanne Kalil

Marge Lovewell

Jackie Tice Schultz                                      Juanita Buren

Essie & Charles Anthony                                Ginger & Bill Hines

Dr. Chelly Hines Dykes

Adam Dykes

Juanita Buren

Donald Espy                                                 Florence Espy

Alphonso Jackson                                         Anthony Jackson

Morris L. Weinstein                                      Arva Weinstein

Jerry O. Roberson                                       Claudia Roberson

Richard Johns                                              Beth & Bob Tarkington


In Honor of:                                  By:

Leigh Munson                                                Regina Burrell

Beth Beggs                                                   Regina Burrell