Ongoing Heatwave in California: A Critical Alert for MS Patients

If you reside in the western coast of the United States, particularly in California, you might be aware of the ongoing heatwave. With temperatures projected to go as high 120 Degress, threats to health and wildlife are extremely prevalent. The Thompson Fire that occurred last July 2 damaged 3,789 acres of land. Additionally, in another CNN report, it was reported that on the same day the devastating wildfire started, two people sadly lost their lives due to the heat wave– one 69 year old and a child as young as 10 years old. Southern California is experiencing another summer heat wave, with temperatures soaring into the triple-digits in some areas.

The National Weather Service has issued excessive heat warnings for the Santa Clarita Valley and Antelope Valley, due to "dangerously hot conditions" expected to persist until at least Tuesday. 

Cities such as Santa Clarita, Lake Castaic, Newhall, Valencia, Lake Palmdale, Valyermo, Llano, Pearblossom, Elizabeth Lake, Lake Los Angeles, Palmdale, and Lancaster are affected by these warnings.

In terms of health, we are pressured to do as much as we can to keep ourselves safe from potential harm. This is especially true for those people who are diagnosed with Multiple Sclerosis as the heat will likely exacerbate their already bad symptoms. 

 MarisaWexler in collaboration with Ines Martins posits that about three-quarters of people with multiple sclerosis (MS) find their symptoms get worse in response to heat and that this heat intolerance that is observed in patients with MS is sometimes referred to as Uhthoff’s phenomenon which we will be talking about in the later parts of this article.

With that said, we invite you to spare us a few moments of your time as we give you information on how the ongoing (and possibly another one that is incoming) heatwave affects people with MS and how you can help alleviate the symptoms felt during episodes– Let us get into it:

Heat Sensitivity in MS

For many people with Multiple Sclerosis (MS), heat sensitivity can be a significant challenge. One of the key aspects of this is Uhthoff’s phenomenon, a temporary worsening of MS symptoms due to an increase in body temperature. This phenomenon can be particularly pronounced during a heatwave, making daily life more difficult.

Uhthoff's phenomenon occurs because heat can damage slow down the already impaired conduction of nerve impulses in demyelinated nerve fibers, which is a hallmark of MS. The slowing down of the conduction of these nerve impulses caused by heat results in even worse manifestations of the symptoms of the patient.

This phenomenon was well-documented in a study in 2018 by Christogianni et al., where they conducted a controlled experiment to se ethe effects of rising temperatures to patients exhibiting symptoms. What they did was subject people to a 25 minute sauna exposure and recorded the core temperature of the people involved. They found that these people whose core temperature increased by 0.5°C had 

“showed deteriorated performance in terms of sustained attention, arithmetic calculations, ability to focus, information processing speed and flexibility and reaction times in comparison to baseline measurements”. 

All of the symptoms stated in the excerpt above proved that heat really does affect the wellbeing of people, especially for those suffering with Multiple Sclerosis. However, not all hope is gone as this worsening is usually temporary and resolves once the body cools down. However, during a heatwave, the persistent high temperatures can make it challenging to find relief.

Heatwave’s Toll on MS

Research into the direct correlation between heatwaves and MS relapse rates is still ongoing. However, Wexler and Martins argue that while heat can exacerbate symptoms, it DOES NOT necessarily increase the rate of actual relapses nor does it cause it. A relapse, or exacerbation, in MS is defined as the occurrence of new symptoms or the worsening of old symptoms lasting more than 24 hours in the absence of an infection or other cause. 

The feeling that they get from worsening symptoms is called a “pseudo-exacerbation” or “pseudo-relapse” as it might feel like a relapse when it actually is not. The key difference in determining if the symptom is simply caused by heat or if it actually is a relapse is by checking when the symptoms go away. 

Pseudo-exacerbations usually go away once the heat issue is resolved (i.e. the person cools down) but an actual relapse should have the following specifications, according to the National Multiple Sclerosis Society (NMSS):

1. Relapse symptoms should last for about a day or 24 hours.
2. The current relapse should have at least a 30 day interval from the last relapse.
3. The cause of the flare-up should be Multiple Sclerosis and not others, like an infection.

This suggests that while heat can make living with MS more uncomfortable and challenging, it may not directly cause the disease to worsen permanently. 

That said, it is still necessary to keep yourself cool amid the heatwaves that are happening and will happen. One way to do this is by making use of the Cooling Stations found all over the Californian State. 

Cooling Stations open in Los Angeles

Cooling stations are designated public spaces where individuals can escape extreme heat during heatwaves. These stations, often located in community centers, libraries, and other public buildings, provide a cool environment with air conditioning, water, and sometimes additional amenities like snacks and seating. For people with multiple sclerosis (MS), who are particularly sensitive to heat, these cooling stations can be lifesaving. Heat can exacerbate MS symptoms, leading to increased fatigue, weakness, and even cognitive issues. Therefore, having access to a cool and comfortable environment is crucial for managing their condition during heatwaves.

Now, in cases of extreme heatwaves such as the one in July and the coming one in just a few days– it is now incredibly important that you do your best to stay indoors and stay cool. However, if you do have to go outdoors, be reminded to always bring water with you so you can keep hydrated. The incredible thing about being in California is that they have the cooling stations that we have talked about above. You can find them through this exhaustive list- notably there is one in Pasadena, it is the Jackie Robinson Community Center found in  1020 N. Fair Oaks Ave. It is open from Monday - Thursday at 10 AM to 9 PM. Definitely give them a visit when you are in the area!

Cooling centers, while a temporary and quick solution to an even bigger problem, definitely do their part in helping the populace deal with the heatwave. Even a certain professor named Kristie Ebi, a professor at the University of Washington’s Center for Health and the Global Environment, said that these cooling centers “save lives.”

Local governments are also aware of the dangers of heatwaves and are fervent in their efforts to further make cooling centers accessible for the general public. Take for example this Facebook post by the California Governor which warns people of the impending heatwave and offers a link to the location of cooling centers in the state. The same is also true for Representative Val Hoyle, who, in her X (formerly Twitter) post, encouraged people to find the cooling stations near them to “beat the heat during the latest heatwave”

Staying Cool with New Techniques

We cannot discount the fact that while cooling centers indeed provide relief, it is not accessible 24/7 and do have working hours. This situation calls for the use of innovative cooling methods and technologies that would benefit people, particularly MS patients. The following are such examples:

• Cooling Vests and Clothing

One of the most popular and effective methods for combating heat sensitivity in MS is the use of cooling vests and clothing. These garments are designed to maintain a lower body temperature, making it easier to handle the heat. Cooling vests often use phase change materials (PCMs) that absorb and store heat, releasing it slowly to keep you cool for extended periods.

For those who prefer less bulky options, cooling scarves, hats, and wristbands can also provide relief. Many people swear by these products for their portability and ease of use.

• Cold Therapy Products

Cold therapy products, such as gel packs and cooling pillows, can be a lifesaver during hot spells. Gel packs can be applied to pulse points like the neck, wrists, and ankles to provide quick cooling. Meanwhile, cooling pillows can help ensure a restful night's sleep by maintaining a lower temperature throughout the night.

• Smart Home Devices

Apart from the products that we have stated above, you can also try incorporating smart home devices as thse can be a huge help in managing heat sensitivity. Here’s how some of these devices can help:

1. Smart Thermostats: These amazing devices can automatically adjust the temperature in your home based on your preferences. They can learn your routine and ensure your living space stays cool, especially during peak heat hours. It is extremely helpful for people that are staying indoors because of the heat as you can avoid over heating through proper regulation of your body temperature. 
2. Smart Fans and Air Conditioners: Smart fans and AC units can be controlled via smartphone apps or voice commands. There are a lot of brands out there who are offering products that allow you to set schedules, adjust speeds, and even monitor the temperature and air quality in your home.
3. Window Coverings: Smart blinds and shades can be programmed to close during the hottest parts of the day, blocking out the sun and keeping your home cooler. Products from companies like Lutron and Somfy integrate seamlessly with other smart home systems.
4. Smart Watches: These watches have been around for a long time now however, their worth truly shines when you apply them to people with MS as, according to Dr.  Bruce A. Cree, a clinical research director at the UCSF Multiple Sclerosis Center,  “There is enormous potential to leverage this kind of passively acquired information about walking in diverse areas of neurology and medicine.”

Applying these innovations will certainly make your life easier despite the heatwave. If you so wish, you can also reach out various communities in the area to get that sense of community and belonging– it is better to get the support of many as opposed to going through all of it alone.

Leveraging Community and Technological Support

Online MS communities are thriving with individuals who share their experiences, tips, and support. Websites like the Multiple Sclerosis Society and MS Trust have forums where members discuss various aspects of living with MS. There are also a lot of Facebook groups that serve the same purpose such as this one– If you prefer reddit, there is also a subreddit dedicated to people living with MS and the insight there could definitely help. These platforms provide a space for patients to connect, share, and learn from each other's experiences.

Practical Tips from the Community

Stay Cool with Simple Solutions:

1. Hydration: Members often emphasize the importance of staying hydrated. Drinking plenty of water helps regulate body temperature.
2. Cool Showers and Baths: Taking cool showers or baths can provide immediate relief from overheating.
3. Cooling Products: Using cooling products like vests, scarves, and pillows, recommended by community members, can be effective in managing heat sensitivity.

Environment Control:

1. Air Conditioning: Keeping the home cool with air conditioning or fans is a common suggestion.
2. Shade and Sun Protection: Staying in shaded areas and using sun protection when outdoors is crucial.

Activity Adjustment:

1. Timing Activities: Members suggest scheduling activities during cooler parts of the day, such as early morning or late evening.
2. Pacing: Taking frequent breaks and avoiding overexertion is key.

On The Use of Mobile Applications

Modern technology offers additional tools to help MS patients manage their symptoms during heatwaves. Several apps provide alerts and reminders to help you stay on top of preventive measures:

• Weather Apps with Heat Alerts:  Weather Apps that you can find already pre-installed in your phone offer detailed weather forecasts and can send notifications when heatwaves are expected. This can help you plan your activities and take necessary precautions.
• Hydration Reminder Apps: Staying hydrated is key to managing heat sensitivity. Apps like Hydro Coach and WaterMinder can help you track your water intake and send reminders to drink water throughout the day.
• Health Monitoring Apps: Apps like Apple Health and Google Fit can help you monitor your overall health and track any changes in your symptoms during heatwaves.

Truly, the promise that a community is behind your back despite all the things that you have went through is indispensable when fighting MS. For people like Jess N Rob Finney, the support a community offers them might just be what they need to push through. In said Facebook post, you can see that people are commenting on the post to offer their support and assistance. This, we surmise, would be a great help to the original poster both emotionally and information-wise.

BTK Inhibitors in Multiple Sclerosis Patients

When it comes to managing multiple sclerosis (MS), the search for effective treatments is ongoing and ever-evolving. In a recently published neurology journal, Wiendl et al. (2023), assert that while current treatments to MS are effective in reducing relapses and relapse-associated aggravation of the disease– they are not very effective in slowing the progression of the disability in the patients.

They may sound the same but actuality, they are not. Think of the former as less chances of the same symptoms flaring up, hence, less relapses. The latter, on the other hand, means the overall progression of the disease, i.e. it gets worse. Once you are in deep in the progression, symptoms could be exacerbated and while they might disappear after a while, once a relapse occurs, the worsened symptoms will manifest again.

Not all hope is lost for the patients though, as one of the promising avenues in resolving this pressing issue is the development of Bruton's tyrosine kinase (BTK) inhibitors. Essentially, BTK inhibitors are a class of medication that target Bruton's tyrosine kinase, a crucial enzyme in the activation of B cells and microglia, which are immune cells involved in the inflammatory process seen in MS. By inhibiting BTK, these medications aim to reduce the inflammation that contributes to both relapses and the progression of disability in MS patients. There are a couple of different BTK inhibitors right now but the one that catches the most interest is remibrutinib.

Remibrutinib– Overview and Mechanisms

Remibrutinib, also known as LOU064, is an experimental oral medication being developed by Novartis. It is currently under evaluation for its potential to reduce inflammation in relapsing forms of multiple sclerosis (MS). According to Wexler (2022) from Multiple Sclerosis News Today, this drug is also being investigated for treating chronic spontaneous urticaria, a condition characterized by itchy hives and swelling under the skin. Remibrutinib is administered as an oral tablet, and it is presently in Phase 3 clinical trials for relapsing forms of MS.

Remibrutinib functions as an oral treatment that selectively inhibits Bruton's tyrosine kinase (BTK). By inhibiting BTK, remibrutinib aims to dampen the inflammatory processes that drive MS. The drug covalently binds to BTK, meaning that it permanently neutralizing the enzyme by maintaining it in its inactive state. This inactive state, theoretically,  slows down the progression of the disease.

Remibrutinib as a new class of medication under investigation for MS is administered as an oral tablet. This is seen in Phase 1 of the Novartis Clinical Trial where the researchers tested various doses up to 600 mg per day in healthy volunteers, and they found that a 100 mg dose taken twice daily was well-tolerated and effective.

The Phase 1 study, conducted by Novartis, included 156 participants who received different doses and dosing schedules of remibrutinib for up to 12 days. Kaul et al, (2021) asserts that the results showed good tolerability, with no serious safety events or treatment discontinuations, and the drug was found to be rapidly absorbed and eliminated from the body without significant effects from food intake.

Clinical Trials and Impacts

Based on available information from the previous phases of the REMODEL study, they were relatively successful. In that regard, trials have now moved on to the third phase. Currently, the third phase is still recruiting participants in the study with one study site in Pasadena, California under SC3 research trials. If you are interested in furthering our knowledge-base regarding multiple sclerosis and finding possible treatments, then do reach out to us through this link.

For some general information on the specifics of the study, the selected participants will be randomly assigned to receive the test drug (remibrutinib) twice daily with 100 mg dose per take. Other participants, still chosen at random will receive teriflunomide which is already an approved treatment for MS. Essentially, the goal is to compare the effect of the treatments on relapse rates after 30 months. The trials also will also assess outcomes related to safety, disability progression, MRI measures of disease activity, and quality of life. Top-line data from the trials are expected by October 2025. For more information on this you can access the study brochure provided by SC3 clinical research trials which you can access through https://www.sc3researchtrials.com/ms-remodel-study.

Stay indoors and hydrated

With the looming threat of another heatwave lasting until Tuesday, it is extremely important for Californians to remain vigilant and stay informed on what is going on within the community.

This is also true for the people with MS because we know that heat does exacerbate the symptoms they feel. And yes, there are cooling stations available and even some other things you can use at home which will help with the symptoms— the need to find an effective and reliable treatment that not only helps with relapses but also the overall progression of the disease is even more important.

The success of this research could help with the understanding of MS and help with the treatment of the people suffering from it.

That said, if you or someone you know has MS, consider exploring the promising REMODEL-1 Study on remibrutinib. Your participation could contribute to groundbreaking advancements in MS treatment. For more information and to see if you're eligible, visit SC3 Research. Together, we can help shape a better future for those living with MS!