News
During the January, 2025 Zoom Support Meeting, the group saw a presentation about Zilucoplan, a drug that was approved by the FDA in October 2023. It is manufactured by UCB Pharmaceutical
Zilucoplan is for adults with gMG who are anti-acetylcholine receptor (ACjR) antibody positive. It can be self=administered via once-daily subcutaneous injection.
If you would like more information, please contact your health professional.
Update April 2025:
Health Partners is now offering both in person and remote-based exercise (via video call) for our MG Exercise study. What this means is that for the exercise program (3x per week for 12 weeks = 36 exercise sessions total) that these can either be done in person at the Neuroscience Center or via a Microsoft Teams video call (at the same frequency/duration). Thanks in advance for your support! 😊
Original Post from Oct 3, 2024:
Health Partners is recruiting for a Light vs Medium Intensity Exercise Study. The purpose of the study is To test the difference between light intensity and moderate intensity exercise on health outcomes in people with Myasthenia gravis (MG)
Dr. Giuliani spoke to our support group on May 18 2024, and wrote up some information for us.
Sunscreen is particularly important when using immunosuppressants like azathioprine and CellCept (mycophenolate mofetil) because these medications increase the risk of skin cancer.
Immune System Suppression: These drugs suppress the immune system to prevent organ rejection in transplant patients or to control autoimmune diseases. A suppressed immune system is less capable of repairing DNA damage caused by ultraviolet (UV) radiation from the sun, increasing the risk of skin cancer.
Photosensitivity: Azathioprine, in particular, can make the skin more sensitive to UV light, a condition known as photosensitivity. This heightened sensitivity means that the skin is more prone to damage from sun exposure, which can lead to an increased risk of skin cancers such as squamous cell carcinoma, basal cell carcinoma, and melanoma.
Increased UV-Induced Mutations: Immunosuppressive drugs can contribute to increased mutations in the DNA of skin cells when exposed to UV radiation, promoting the development of skin cancer.
Given these risks, it's crucial for patients on these medications to protect their skin from sun exposure. This includes using sunscreen with a high SPF, wearing protective clothing, and avoiding excessive sun exposure, especially during peak UV hours.
Azathioprine: Patients on azathioprine have an increased risk of non-melanoma skin cancers, especially squamous cell carcinoma. The relative risk can be up to 65 times higher than in the general population on transplantation rejection doses, with an unclear amount of risk increase with doses for neuromuscular disease.
CellCept (Mycophenolate Mofetil): Similar to azathioprine, this drug increases the risk of skin cancers, although the risk is lower compared to azathioprine.
- Tacrolimus: This drug also increases the risk of skin cancers, particularly when used topically, though systemic use in transplant patients is associated with an elevated risk. There is no risk known associated with using at neuromuscular disease doses.
- Methotrexate: This drug is associated with a modest increase in the risk of skin cancer, particularly non-melanoma skin cancers.
Relationship of Vitamin D Disorders and Autoimmune Conditions
However, Vitamin D plays a role in the regulation of the immune system, and deficiencies in vitamin D have been associated with an increased risk of developing autoimmune conditions, including myasthenia gravis. Vitamin D modulates the immune response, and insufficient levels may lead to an increased autoimmune activity.
It is important to keep a balance of Vitamin D generation which occurs with exposure to sunlight, and skin protection from sunlight.
Vitamin D Deficiency and Autoimmunity: Low levels of vitamin D are common in individuals with autoimmune diseases. This deficiency may exacerbate the disease's activity and symptoms. *Myasthenia Gravis: Some studies suggest that vitamin D deficiency might be linked to both the onset and severity of myasthenia gravis, though more research is needed.
Using Sunscreen and Maintaining Vitamin D Levels Balancing sun protection and vitamin D synthesis involves:
Sensible Sun Exposure: Short, regular intervals of sun exposure can help maintain vitamin D levels without significantly increasing skin cancer risk. About 10-30 minutes of midday sun exposure several times a week may suffice, depending on skin type, location, and season.
Dietary Sources and Supplements: Consuming foods rich in vitamin D (such as fatty fish, fortified dairy products, and egg yolks) and taking vitamin D supplements can help maintain adequate levels without relying on sun exposure.
Timing and Sunscreen Application: Applying sunscreen after a brief period of sun exposure (ie 5-10 minutes) allows for some vitamin D synthesis while still providing protection.
It's important to discuss with your doctor to tailor these recommendations based on individual health needs and risks.
Brain and Life published an article about managing anxiety which can happen to people with neurological disorders.
Click here to access the article.
This topic was discussed at the June Support Group meeting.
There are two articles from recent issues of Brain and Life (brainandlife.org) that may be of interest to the group. The links to the articles are:
Chris Hemsworth pushes boundaries
https://www.brainandlife.org/articles/chris-hemsworth-pushes-limits-learn-how-brain-body-age
Ultra-processed foods and Dementia
https://www.brainandlife.org/articles/eating-ultra-processed-foods-may-increase-risk-of-dementia
This was from a local paper in The Villages, Florida
Eight Benefits of belonging to a support group.
Reducing distress, depression, anxiety or fatigue
Improving skills to cope with challenges
Gaining a sense of empowerment, content or hope
Getting practical feedback about treatment options
Feeling less lonely, isolated or judged
Talking openly and honestly
Staying motivated to manage chronic conditions or stick to treatments
Improving understanding of a disease and your own experience with it
These reasons are why you should join our support group meetings. Check the Local Groups section for details.
According to a media release by AstraZeneca on April 28, 2022,
WILMINGTON, Del., April 28, 2022 – ULTOMIRIS® (ravulizumab-cwvz) has been approved in the US for the treatment of adult patients with generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody-positive, which represents 80% of people living with the disease.
Here is a link to the media release for more information Click HERE for Link
The U.S. Food and Drug Administration on December 17 approved Vyvgart (efgartigimod) for the treatment of generalized myasthenia gravis (gMG) in adults who test positive for the anti-acetylcholine receptor (AChR) antibody.
Click HERE to access the press release for more information.
Please ask your doctor is this therapy is right for you.
Dear MG Minnesota Conference Attendees,
Thank you for attending the fifth annual conference this past Sunday. It was wonderful to see your faces and listen to your questions.
At the bottom of this post are the documents that David Hughes, the physical therapist mentioned.
Here are the links to David’s and Josh’s presentations. Please feel free to share the link with people you think would be interested in these videos. They are NOT on YouTube. Please do not make them available for the entire world to view. If you would like to re-listen to Dr. Guliani’s quick presentation, please send me a note and I will send you the link, when I receive permission from him.
David Hughes, physical therapist
Josh Frederickson, “Living Better with MG” https://us02web.zoom.us/rec/share/3fJhvYWW2NQ5wirS_sghAO8gmI2FggwcLd04igLE40sOjUuG_4VpdSjPMet9aGPq.WbjO6xhCwVGyvLIt?startTime=1632668222000
Again, thank you for attending the conference. We hope to see you in 2022.
Note: Medical information included on this website comes from sources that are noted along with the information. Citing a source on this website does not imply an endorsement by Myasthenia Gravis Minnesota, Inc. (mgMN). Always consult your physician, pharmacist, nurse or other health care professional for advice and expertise regarding the care that is best for you.
