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Blood Cancers Like Leukemia May Lead to More Severe Cases of COVID-19 Than Other Kinds of Cancer

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Blood Cancers Like Leukemia May Lead to More Severe Cases of COVID-19 Than Other Kinds of Cancer

COVID-19 and Cancer Risk

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

You may already know that individuals with cancer have a higher risk of COVID-19 complications, according to the U.S. Centers for Disease Control and Prevention, which maintains a list of medical conditions associated with an increased risk of severe illness from COVID-19.

A new study now provides additional insight into the risk factors of hematologic cancers (also known as blood cancers), which begin in blood-forming tissues like bone marrow or immune system cells.

Adult patients with blood cancer, such as leukemia, lymphoma, and myeloma, had a 57 percent higher risk of getting severely ill if they were diagnosed with COVID-19 compared to cancer patients with solid organ tumors such as breast cancer, reported an August study published in the journal The Lancet Oncology. They were significantly more likely to require high-flow oxygen, non-invasive ventilation, and intensive care unit admission for ventilation.

To gather these results, researchers studied 1,044 patients enrolled in the UK Coronavirus Cancer Monitoring Project cohort between March 18 and May 8. The participants had a median age of 70 years and 57 percent were men.

Leukemia patients, in particular, were twice as likely to die from COVID-19 than other participants. The immune system disruption leukemia patients experience and their type of cancer treatment may be partly why they’re at risk for getting infected with COVID-19 and experiencing severe consequences like multi-organ failure, note the researchers.

Patients with blood cancers who had recent chemotherapy were also twice as likely to die during COVID-19 hospitalization.

Age also played an important role. Patients ages 80 or older were nearly five times more likely to die from COVID-19 than those ages 40 to 49.

Blood cancer patients in the coronavirus cohort were overrepresented when compared to those in the general population, which may suggest an increased susceptibility in these individuals to viral infection, according to the researchers.

Overall, more research on this patient population is needed. The study authors note that previous studies observing the link between blood cancers and fatality rate in COVID-19 patients have both supported and contradicted this study’s results.

Blood cancers are typically the result of excessive reproduction of white blood cells, and are more common in men than women, per Yale Medicine. The risk factors for blood cancers are not fully understood, but experts believe a combination of genetic and environmental factors may play a role. Smoking, radiation, and exposure to certain chemicals have all been linked to higher risk of certain types of blood cancers.

Get Free Coronavirus Support for Chronic Illness Patients

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Blood Cancers: Symptoms, Diagnosis and Treatment. Yale Medicine. September 2, 2020. https://www.yalemedicine.org/conditions/blood-cancers.

Lee Lennard YW, et al. COVID-19 prevalence and mortality in patients with cancer and the effect of primary tumour subtype and patient demographics: a prospective cohort study. The Lancet Oncology. August 24, 2020. doi: https://doi.org/10.1016/S1470-2045(20)30442-3.

People with Certain Medical Conditions. Coronavirus Disease 2019 (COVID-19). U.S. Centers for Disease Control and Prevention. August 14, 2020. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html.

CREAKYJOINTS PRESENTS TUMBLER AND TIPSY BY MICHAEL KULUVA VIRTUAL PRESENTATION OF THE SPRING/SUMMER 2021 COLLECTION DURING NEW YORK FASHION WEEK

FOR IMMEDIATE RELEASE

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

Global Audience Invited to Engage at Home to Celebrate Accessible Fashion

UPPER NYACK, NY (September 3, 2020)CreakyJoints®, a Global Healthy Living Foundation digital patient community for people with all forms of arthritis, today announces it will present the Spring/Summer 2021 Tumbler and Tipsy® by Michael Kuluva collection timed to New York Fashion Week. As a designer with rheumatoid arthritis (RA) and CreakyJoints member, Michael advocates for social distancing and following local guidelines to stay safe and reduce the spread of the COVID-19 virus. Therefore, “The Newest Normal” collection event –  filmed in Canada where Michael is residing during the pandemic — will be presented virtually and premiere on YouTube on September 16, 2020 at 8pm ET. Immediately preceding the premiere, Michael will participate in a live #CreakyChats on Twitter to discuss the inspiration behind his collection. After the chat, CreakyJoints and the Canadian Arthritis Patient Alliance (CAPA) will host an interactive watching party on Zoom which will conclude with a panel featuring Michael, model Nini Amerlise, Emily Sirotich and special guests from the CreakyJoints community.

As the Spring/Summer 2021 Tumbler and Tipsy® virtual show starts, viewers will meet arthritis advocate and CreakyJoints member Emily Sirotich, whose sleep is disturbed by pain and is seeking support from the CreakyJoints website. It won’t be long before she crosses path with Michael and gets magically transported to the collection presentation.

“I’m thrilled to bring my COVID-conscious collection to a global audience because being physically distant does not preclude joint celebrations,” said Michael Kuluva, designer of Tumbler and Tipsy. “My new collection was inspired by my desire to inject light, color, and happiness into our world, which may feel smaller as we hunker down to protect each other during the pandemic. When I get dressed in something that looks amazing and feels great, it sets the tone for the rest of my day. I hope my collection inspires self-care.”

“My involvement in the Tumbler and Tipsy Fashion Show highlights the importance of bringing lived experiences into the spotlight.  Arthritis advocacy can take many forms, and it is inspiring to see Michael Kuluva showcase the experience of arthritis patients on the world-stage,” said Emily Sirotich, a PhD student at McMaster University in Hamilton, Canada and a member of the Canadian Arthritis Patient Alliance, CreakyJoints, and the COVID-19 Global Rheumatology Alliance.

The Newest Normal

Michael continues to innovate, filling The Newest Normal with comfortable clothing that is great for lounging around in, but stands out from the crowd with high volume colors and glam touches that will make the wearer feel confident. Always inclusive, Michael’s clothing is easy to put on and many of the collection pieces will have hand-painted, glow-in the-dark details thoughtfully placed to emphasize where people living with arthritis experience pain – on the inside and out.

“The pandemic has upended everyone’s lives, particularly those who are at increased risk because of underlying conditions or living with a chronic disease, like I do. When I need support, I’m glad I can count on CreakyJoints to be there for me. CreakyJoints parent organization, the Global Healthy Living Foundation, jumped into action and launched a Covid19 patient leadership council and support program, available at GHLF.org. Additionally, I can find community day or night on their social media channels, log my symptoms into the ArthritisPower mobile app and participate in their monthly #CreakyChats,” added Mr. Kuluva.

Event Details

The Tumbler and Tipsy by Michael Kuluva virtual show will premiere at 8:00 p.m. on September 16, 2020 on YouTube, accessible at www.virtualfashionshow.net or http://www.youtube.com//michaelkuluvaofficial

To participate in the live #CreakyChats on Twitter (@CreakyJoints) visit https://twitter.com/CreakyJoints on September 16, 2020 at 7pm E.T. Logistics for the  ZOOM watch party, which will require pre-registration, will be announced later.

CreakyJoints co-founders Seth Ginsberg and Louis Tharp said, “Every year, we’re surprised and inspired by Michael’s Tumbler and Tipsy collection, which is always inclusive without sacrificing fun or style. We congratulate him on his forthcoming premiere and look forward to continuing our relationship with him because he sets an important example of how to live and live well with rheumatoid arthritis.”

About Rheumatoid Arthritis

Rheumatoid Arthritis (RA) is a chronic inflammatory disease that causes pain, stiffness, swelling and loss of function in the joints throughout the body, but typically the small joints of the hands and feet. RA can strike at any age and, if left untreated, can cause joint damage and even permanent joint destruction or harm to the body’s organs. RA is an autoimmune disease that is treated typically by a specialist called a rheumatologist.  Read more about managing RA in “Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis,” available for free download at http://creakyjoints.org/patientguidelines.

About Tumbler and Tipsy

Anchored by the creative mind and brilliant talents of professional figure skater turned fashion designer, Michael Kuluva, Tumbler and Tipsy is not only reworking, redefining and revamping the world of fashion but is taking it over with his sexy yet stylish brand.  Tumbler and Tipsy is produced in Los Angeles, CA with colorful collections that are distinctive but never repetitive, chic, and classy while being comfortable and versatile.  Tumbler and Tipsy is not just a line of clothing, it’s a collection of art, it’s an embodiment of chic fashion in the modern world, and it’s a representation of a lifestyle: fun, bold, luxurious and daring. www.tumblerandtipsy.com

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites www.CreakyJoints.org, https://creakyjoints.org.es, www.creakyjoints.org.au, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org) with more than 28,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org.

Find us on social media:

Facebook: https://www.facebook.com/creakyjoints and https://www.facebook.com/GlobalHealthyLivingFoundation/

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

What the Prime Minister of Japan Taught Me About Navigating My ‘Invisible’ Crohn’s Disease at Work — and in Life

Working with Inflammatory Bowel Disease

One of my invisible illnesses — Crohn’s disease — just became a bit more visible recently when Japanese Prime Minister Shinzo Abe announced he would resign from his position due to his struggles with ulcerative colitis.

Ulcerative colitis and Crohn’s disease are both considered forms of inflammatory bowel disease (IBD), which is an autoimmune disease of the gastrointestinal tract defined by chronic inflammation that causes sores (ulcers) along the lining of the GI tract and rectum. The resulting symptoms — which include abdominal pain, diarrhea, weight loss, and fatigue — can be severely debilitating, both physically and emotionally. Unfortunately, there is no cure for IBD, so patients try to manage the disease through medication, lifestyle changes, and sometimes surgery.

According to the New York Times, Prime Minister Abe said in a news conference that doctors told him a few months ago they found signs that his ulcerative colitis had relapsed. He said he had lost much of his strength and he was stepping down now so that he could receive treatment with a new medication.

The Challenges of Working with IBD

Most people with IBD are able to successfully hold a career and participate in the workforce, like Shinzo Abe did as the longest-serving prime minister in Japan’s history. However, when the disease is flaring, its symptoms can lead to reduced productivity and increased absence from work. This can cause stress and in turn exacerbate IBD symptoms, creating a vicious cycle.

Several research studies have found that overall, an IBD diagnosis increases the risk of disease-related work disability during a patient’s lifetime. One study from Norway that followed hundreds of IBD patients over the span of 10 years found that patients diagnosed with ulcerative colitis or Crohn’s disease were nearly twice as likely to be on disability pension compared to the general population.

As someone who has had IBD for five years now, I can say that the impact of this disease ebbs and flows. It is hard to have expectations with such an unpredictable disease that has no cure. While many days can go by and I can start to feel normal because I barely notice my Crohn’s, it can come roaring back just as quickly as I forgot I had it.

All the while, my Crohn’s is invisible to everyone around me. My best and worst days can look just the same to outsiders. And while part of this is due to the invisible nature of the disease, it is also because I hide my symptoms to quietly fit in with the rest of my healthy peers.

I often look to my friends with IBD for advice, tips, understanding, and camaraderie. And while this satiates my need for support, it doesn’t give widespread recognition to our struggles. To have a world leader open up about health struggles is just the kind of role model we need to help others understand how IBD can take a toll — sometimes a severe one — on our everyday lives.

Raising Awareness of Life with IBD

Shinzo Abe’s resignation represents a lot for the IBD community and the chronic disease community at large. The prime minister brought awareness to our invisible disease and the challenging experience of living with IBD.

It is much more than just a “bathroom disease.”

This awareness helps dismantle the isolation of having a chronic illness. His decision also proves that we must value our health and make it a priority, which is often easier said than done.

Whenever my IBD becomes overwhelming, it feels like an emotional battle of admitting defeat to my disease. Witnessing a world leader step down to prioritize health reminds me that doing this is not admitting defeat, but rather taking charge of the fight.

Every May, patient organizations across the world participate in World IBD Day. This past May, World IBD Day, coordinated by European Federation of Crohn’s & Ulcerative Colitis Association (EFCCA), addressed the topic of raising awareness on work life and IBD. This theme was an acknowledgment of the impact that IBD can have on one’s professional life. Who knew that just months later, a public figure would be an example to the world of how disruptive IBD can be to one’s work life?

Taking time off or stepping down from your job like Prime Minister Abe did is not always a viable option for people living with IBD or other chronic, invisible illnesses. But not taking care of your health isn’t an option either when you have IBD.  Over the past few days, I’ve spoken with other IBD patients about managing IBD in the workplace. I asked them how they cope and how they handle talking about their condition with others.

Here’s a sampling of their advice, which is similar to the recent actions of Japan’s prime minister. Focus on open communication and recognizing your needs.

Needs matter

I’m proactive about telling my colleagues about my needs if it will get in the way of my work. While I usually don’t disclose many details of my condition, it comes up when food is involved, and I’m asked about dietary restrictions.”

Speak up

“If I am going through a flare, I will try to let my supervisors know in case I end up needing to take time off. I find that if I am upfront and not uncomfortable talking about it, my supervisors and colleagues won’t be either.”

Be candid

“Be honest with work about your IBD. When colleagues know what you are dealing with, they are more likely to be understanding. If you don’t feel well and can easily complete your tasks remotely, ask to work from home for the day.”

Be prepared

“I am always prepared for what may come throughout the day. I pack my bag with snacks, water, and my medications. When my pain is very bad, I often use a stick-on heating pad that is very discreet and helps me get through the day.”

Put yourself first

“When I’m going through a flare, I acknowledge my physical limits concerning work. Typically, I try to be a team player, but when I’m sick I’m less inclined to pick up an extra shift or stay late nights ‘to get the job done’ because I know I need all the off-time I can get to work on getting better. I will say, prioritizing yourself is significantly easier to do when you work with people who understand your health challenges and are willing to support you through it.”

Get More Involved with Patient Advocacy

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

Høivik ML, et al. Work disability in inflammatory bowel disease patients 10 years after disease onset: results from the IBSEN Study. Gut. March 2013. doi: http://dx.doi.org/10.1136/gutjnl-2012-302311.

Rich M. Shinzo Abe, Japan’s Longest-Serving Prime Minister, Resigns Because of Illness. The New York Times. August 28, 2020. https://www.nytimes.com/2020/08/28/world/asia/shinzo-abe-resign-japan.html.

‘Leaky Gut’ Might Be an Early Warning Sign of Crohn’s Disease, New Research Shows

Crohn's Disease Leaky Gut

No one knows exactly what causes Crohn’s disease, a chronic, inflammatory condition in which the body’s immune system mistakenly attacks the digestive tract, causing such symptoms as diarrhea and abdominal pain. But experts do know that diagnosing Crohn’s as soon as possible offers the best chance of preventing the disease from worsening and avoiding serious complications.

New research suggests that a test used to measure intestinal permeability — often referred to as a “leaky gut” — might help identify Crohn’s disease earlier.

When everything in the gastrointestinal tract is working properly, food that travels through your GI tract largely stays there, though tiny holes allows nutrients to pass through the gut wall and into your bloodstream. If those holes are too large, however, bacteria and other substances that shouldn’t cross the boundary of the gut wall end up reaching the bloodstream. This is thought to contribute to inflammation.

People who have a leaky gut sometimes report experience digestive distress, headaches, rashes, or other symptoms, but many Western medical professionals do not consider “leaky gut syndrome” to be a valid diagnosis or consider it dangerous.

Now, new research published in the journal Gastroenterology might lead them to think differently. In the study, researchers measured intestinal permeability in 1,420 healthy first-degree relatives of Crohn’s disease patients between 2008 and 2015. People with a close relative of someone with Crohn’s have a higher than average risk of developing it themselves.

Intestinal permeability was assessed by having study participants drink a solution containing two types of sugars, lactulose and mannitol, then measuring quantities of both in their urine. In people with a healthy gut, these sugars mainly stay in the intestines and aren’t excreted in urine.

Within three years, 50 study participants were diagnosed with Crohn’s disease. The researchers determined that members of this group were significantly more likely to have had abnormal intestinal permeability during the earlier phase of the study than people who were not diagnosed with Crohn’s disease.

“Abnormal gut barrier function might serve as a biomarker for risk of [Crohn’s disease] onset,” the researchers wrote.

Future studies will be needed to confirm these findings.

Denno MD, et al. Use of the Lactulose to Mannitol Ratio to Evaluate Childhood Environmental Enteric Dysfunction: A Systematic Review. Clinical Infectious Diseases. November 2014. doi: https://doi.org/10.1093/cid/ciu541.

Turpin W, et al. Increased Intestinal Permeability is Associated With Later Development of Crohn’s Disease.Gastroenterology. August 10, 2020. doi: https://doi.org/10.1053/j.gastro.2020.08.005.

Swift D. Study ID’s Possible Crohn’s Disease Prodrome. MedPage Today. August 11, 2020. https://www.medpagetoday.com/gastroenterology/inflammatoryboweldisease/88017.

Chemo Side Effects, Radiation, and COVID on the Rise: My 2020 Breast Cancer Battle Continues

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Marisa Sullivan Chemo Aftermath COVID-19

I beat triple-negative breast cancer in May at 40 years old.

I had a complete response to my chemotherapy treatment, the words spilling from my surgeon’s lips like a sweet serenade. Cancer-free.

For the five straight months that I received chemo for the tumor that remained inside my breast, that was purely my only focus: beating cancer. (Per treatment recommendations for my kind of cancer, I was to first receive chemotherapy to shrink the tumor and then have a lumpectomy surgery to remove what remained.)

Five months of poison? Sign me up! Monthly injections of hormone medication in the butt? No problem! I was willing to do anything and everything to stay a living, breathing being on this Earth.

With triple-negative cancer, chemo is medically your only option (as opposed to other kinds of medications that can act on hormone-sensitive cancers or cancers with other genetic mutations). In addition to chemo, the hormone drugs are given to protect your ovaries and also serve as a backup in case the cancer winds up being more than one sub-type or they discover another tumor.

Compared to other patients, I somewhat sailed through my treatment, at least physically. I’m not sure if the emotional part ever fully heals.

But after a cross-country, post-lumpectomy drive from Los Angeles to Florida to spend time with family and celebrate with many socially distant beach days — not to mention some soul-cleansing powerful thunderstorms — it was a start.

But now the “fun part” is over. At least temporarily.

Facing the Lingering Side Effects of Chemo

Yes, I know I’m immensely lucky, and I’m beyond grateful for how things have turned out so far, but once you start getting your groove back and start noticing the ways your body is different, it’s a little disconcerting. I wasn’t thinking of the aftermath when I was going through chemo treatment. My mindset was one thing at a time. And I had had my eye on only one prize: survival.

Granted, it’s only been a few months off chemo and two months off the hormone drug, but will I ever be fully back? Even if these side effects improve, what else might pop up down the road?

Joint Pain

The first thing I noticed was the joint pain. It’s not treacherous, but it’s significant.

I felt pretty good for the first month off of chemo, so part of me wonders if it’s mainly from the Lupron shot that I was given to suppress my hormones. Joint pain seems pretty common from both the chemo and hormone drugs from what my doctors tell me. They’re just not sure when and if it will go away.

It takes me a bit longer these days to get out of bed, in and out of a car, or to bend down to pick something up.

My body feels like it’s aged at least 10 to 15 years (or maybe more, considering my 73-year-old mother seems to move more swiftly than I do these days). It takes me a few seconds to open my hands in the morning after my fingers have been curled all night in my sleep. They feel stuck in that position, which is a little scary.

I wanted to start working out right away but obviously knew I needed to ease back into it. I started doing very low-impact barre workouts at about 75 percent of my usual effort and that was too much for my joints. A few slow squats and lunges hurt my knees.

Walking 10,000 steps a day? Forget it. My body would be too sore the next day. I tried to tell myself that 5,000 steps per day was sufficient for now and I could work back up to it. Plus, my ankles were starting to feel that they couldn’t support my weight as easily — and I have an average-sized 5’4” frame.

Lack of Energy

When I get up first thing in the morning, I have to waddle very slowly to get my body used to the motion of walking. Before cancer, I had the energy and agility of a teenager, so it has even been more noticeable for me.

Weight Gain

I did experience a little weight gain, which I can’t complain about because I look strong and healthy. My left boob is ginormous after surgery from the scar tissue filling in around the lumpectomy site — that’s surely a couple pounds right there, I keep telling myself — but I have to be thankful that I still have my breasts. I didn’t gain or lose one pound throughout my entire cancer journey, until now. Again, it was right when I went off of the hormone drug.

I had been pregnant before and had an early miscarriage, so I remembered my body operating the same way then when it adjusted to the sudden shift in hormones. A little more weight on the stomach. Not being able to lose a pound no matter what I did. My body also seems to be holding on to a lot of water weight, but then again, I’m in a new climate in 95-degree humidity every day opposed to mild dry heat in L.A. where I’ve lived the past 20 years.

Menstrual Cycle Changes

And this is a little embarrassing, but there are also some changes downstairs if you know what I mean. I haven’t had a period since November. My body is regulating and lubricating as the estrogen flows back into my system. I went and saw a new gynecologist (who my mother sees — is that creepy?) and she says these changes I’m experiencing are from the hormone drugs and told me, “if your period doesn’t come back within the next six months, we’ll test your fertility.”

I was warned that I may no longer have that fertility after the intense treatment I’ve been on, which is why I froze my eggs quickly before chemo, yet only produced five. Better than nothing, but I was told by my doctor that there’s only a 5 percent chance that each one will “take.”

So now it’s just a waiting game. If Aunt Flow comes to visit in Florida then I know I’m good. If not, well I can just hope that one of those frozen eggs I’m paying rent for in Beverly Hills holds my miracle baby.

If I am told that getting pregnant will not happen for me, I’ll be devastated. But I’m also quite a mover, shaker and avid world traveler, so under normal times that would have been the trade-off. Only there’s currently not a whole lot of travel and U.S. citizens are not even allowed in Europe. So there’s that. We have a while to go before we know the fate of this world and our country.

And after two months off to heal from surgery and celebrate life a little despite the craziness going in our country, my last phase of treatment has just begun: radiation.

Down the Road of Radiation

I thought my cancer-and-COVID worries would go away after my surgery and being deemed cancer-free, but six weeks of daily radiation — in Florida, where the coronavirus is rampant — does not make me feel super comfortable. I’m thankful for the health care staff taking temperatures in the lobby but there are 200 cancer patients passing through for their daily treatment, most of them old and many likely residing in nursing homes, quite risky territory right now.

The start of quarantine in March, when I was a little more than halfway through my chemotherapy, was scary enough and I didn’t even know anyone yet who had contracted the virus. Now, I know more than a dozen close friends who have battled coronavirus. One of whom sadly passed it on unknowingly to her boyfriend, who then passed it on to several family members and his father lost his life. Every time I go on social media it seems another friend has lost a parent or grandparent or dear family friend.

Although my immunity is up from when I finished chemotherapy, what sort of impact will radiation have on my body? Will I be in bad shape if I were to contract coronavirus while going through radiation?

Maintaining Perspective

I want my body to feel like it did before cancer. I want to go back to how things were before the coronavirus pandemic. But it doesn’t look like either will happen very soon.

Despite these lingering symptoms I’m discovering, I’m back to just being thankful for my survival each day.

I may have beaten cancer — at least for now — but there is still a daily lethal threat out there for me and millions of other immunocompromised people. At this point, I have to say that coronavirus scares me a lot more than cancer.

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Managing Migraine With Medical Treatments: Acute Treatments to Stop Migraine Attacks When They Happen

acute-migraine-treatment--logo

Migraine is a complex disease of the brain and nerves that causes attacks of headache, nausea and vomiting, hypersensitivity to light and noise, and other symptoms. Attacks can be disabling. For most people with the condition, both lifestyle management and medication are needed. This article covers medications for treating migraine attacks when they happen—called acute treatments. Preventive treatments, which reduce the likelihood of having an attack are covered in Managing Migraine With Medical Treatments Part II.

Acute Treatments

The sooner a migraine attack is treated, the more likely an acute medication is to stop the attack. Some headache specialists suggest using an over-the-counter medicine (aspirin, ibuprofen, naproxen or a combination treatment) first and taking a prescription treatment only the first medicine doesn’t stop the attack. Other specialists suggest deciding whether to start with an over-the-counter medicine or a prescription treatment based on how severe the attack seems to be (that is for milder attacks, try an over-the-counter drug first, and for more severe attacks, skip that step and take the prescription drug right away).

Acute Medications Available Without a Prescription

There are several over-the-counter medicines for pain relief that may stop a relatively mild migraine attack. These drugs are pain relief medicines and anti-inflammatory medications that treat any type of pain. Aspirin, acetaminophen (alone or in combination with aspirin and caffeine), ibuprofen, or naproxen may all be helpful.

CAUTION: These drugs should not all be taken at the same time! If you feel more than one is needed for a single attack, talk to a doctor about how to do that safely and about whether a migraine-specific medication is needed.

Acute Medications Available by Prescription

For many, over-the-counter medications are not strong enough to treat most of their attacks. A doctor can prescribe treatments proven to be more effective. Some newer acute treatments have been specifically designed to treat a known biologic cause of migraine.

Anti-Inflammatories

Stronger anti-inflammatory medicines (eg, diclonfenac) can be prescribed. This may be appropriate if over-the-counter medicines start working less well than before. Typically, however, stronger anti-inflammatories do not stop most attacks.

Vasoconstrictors

Dihydroergotamine (DHE) blocks a serotonin receptor on blood vessels and nerves and makes blood vessels constrict (get smaller). Although DHE can be very effective for stopping migraine attacks—especially severe ones—it can be difficult to use because it is available only as a subcutaneous injection (needle under the skin) or a nasal spray that requires a special device.

Triptans are vasoconstrictors that block a serotonin receptor on nerves and blood vessels and stop some, but not all, migraine attacks. Triptans are available as pills, nasal sprays, injections, or suppositories and include almotriptan, eletriptan, frovatriptan, naratriptan, rizatriptan, sumatriptan (alone or in combination with naproxen), and zolmitriptan.

CAUTION: Vasoconstrictors (both DHE and triptans) cannot be used if there is any risk for or presence of heart or kidney disease. Also, DHE is not safe in pregnancy or during breast-feeding.

Opioid Pain Relievers

Opioid pain relief medications can stop migraine attacks and may be prescribed to use as a last resort. Use is NOT recommended, however, because of the risks of addiction and medication-overuse headache.

CAUTION: Avoid using anti-inflammatories, DHE, opioids, or triptans more than 3 times per week to avoid developing medication-overuse headache. If migraine attacks occur on more than 3 days per week, preventive treatment may be needed.

Lasmiditan

Lasmiditan was approved in October 2019 and is the only drug in its class. Lasmiditan binds serotonin receptors on nerves, but not on blood vessels. In studies, lasmiditan stopped about 2 out of 5 attacks.

CAUTION: Lasmitidan can make some people sleepy and a person should not drive a vehicle within 8 hours of taking it. Lasmiditan also has a low risk of addiction and is a controlled substance, regulated by the Drug Enforcement Agency (DEA).

CGRP Blockers

The -gepants are in a new class of drugs that block a naturally produced substance called CGRP or its receptor. After researchers found CGRP in people’s blood during migraine attacks and discovered that giving CGRP caused attacks, drugs to block CGRP were developed to treat migraine attacks. Ubrogepant and rimegepant were approved in December 2019 and February 2020. In studies, both stopped about 2 out of 5 attacks. Ubrogepant and rimegepant are taken by mouth and are not sedating or addictive. So far, they have been safe in people with risk factors or actual heart and kidney disease.

Conclusion

There are many options that can be tried for stopping migraine attacks when they occur. Lifestyle changes that promote overall health can also reduce the frequency and severity of attacks. For people who have attacks 4 or more times each week, preventive medications are also available.

Managing Migraine With Medical Treatments: Preventive Treatments to Reduce Migraine Attack Frequency

migraine-prevention-med-logo

Migraine is a painful and disabling disease of the nerves and brain that can be treated with a combination of acute treatment to stop attacks when they occur and preventive medication ad lifestyle changes to reduce the frequency of attacks. In this article, preventive medications to reduce frequency and severity of attacks are covered.

When Prevention is Necessary

The sooner a migraine attack is treated, the more likely the medication is to stop an attack. Unfortunately, taking these medications more than 3 times per week carries the risk of medication-overuse headache. This means that anyone who has more than 3 migraine attacks per week may have to choose which attacks to treat and which to struggle through.

To address this problem, preventive treatment of migraine has been developed to try to keep reduce the frequency of attacks. Fewer attacks means more days of being able to function and a better chance of being able to use a medication to stop an attack that does happen.

Types of Prevention

There are multiple migraine preventive treatment types, or drug classes. The most recently developed are the first that were created specifically for migraine; these are the CGRP inhibitors. All other classes that were used for preventing migraine were created to treat other conditions including botulin toxin (developed to treat eyelid spasms and also known for cosmetic uses), anesthetics, anti-inflammatories, medications to lower blood pressure, antidepressants, and antiseizure medications. Some of these are injected into muscles or nerves; most are taken by mouth.

If you feel you could benefit from these types of treatments talk with your healthcare provider.

Oral Preventive Treatments

Most preventive treatments are taken by mouth and most have multiple side effects that many people have difficulty tolerating. In fact, it is estimated that 8 of 10 people prescribed preventive migraine treatments that were not developed for migraine stop taking them. Some people have medical conditions that prevent them from taking these treatments. In contrast, some people with migraine and other condition, such as epilepsy or high blood pressure, can treat both at once.

Antiseizure medications topiramate, divalproex, and sodium divalproate are used, and topiramate has the most evidence of being effective for migraine. Side effects of topiramate include trouble thinking clearly, glaucoma, kidney stones, and numbness/tingling in the hands and feet. Side effects of divalproex and sodium divalproate include hair thinning, bone marrow problems, sleepiness, liver problems, tremors, and weight gain. Divalproex and sodium valproate are not safe in pregnancy.

Beta-blockers and angiotensin enzyme converting inhibitors (ACE inhibitors) that treat hypertension and other heart conditions can be used to help prevent migraine attacks. Typically, these are not a first-choice treatment unless a person with migraine also has a heart condition. The beta-blockers propanolol, metoprolol, timolol, and atenolol have side effects of depression, dizziness, fatigue, and impotence, and there is a risk that the heart rate may be slowed too much. The angiotensin converting enzyme inhibitors (ACE inhibitors) lisinopril and candesartan have side effects of cough, dizziness, and fatigue and there is a risk that blood pressure could be lowered by too much as well. The ACE inhibitors are also dangerous during pregnancy and breast-feeding.

Certain antidepressants, venlafaxine and tricyclic antidepressants (especially amitriptyline) may help prevent migraine attacks. Side effects of venlafaxine are drowsiness and nausea. Side effects of amitriptyline include agitation, dry mouth, constipation, blurred vision, sleepiness, seizures, sexual dysfunction, and weight gain.

Self-Injectable and Infusion Treatments

The monoclonal antibody CGRP blockers are new class of drugs that block a naturally produced substance called CGRP or its receptor. After researchers found CGRP in people’s blood during migraine attacks and discovered that giving CGRP caused attacks, drugs to block CGRP were developed to treat migraine attacks. In 2019 and 2020, 4 of these drugs were approved, including erenumab, fremanezumab, galcanezumab, and eptinezumab. The first three of these are injected at home by the person being treated using a pen-like injection device. The fourth is an intravenous infusion that is given by a health care provider in an office or infusion center. Side effects include irritation at the injection or infusion location and constipation. All of these drugs are safe in people with risk factors or actual heart and kidney disease.

Injections from Health Care Providers

Botulin toxin and anesthetic nerve blocks and both reduce the frequency of migraine with few side effects. For migraine, botulin toxin is injected into muscles of the head and neck every 3 months. Although botulin toxin may not be effective until after the sixth or ninth month of treatment (2nd or 3rd set of injections), there is evidence that it becomes more and more effective after that. Botulin toxin cannot be used during pregnancy or in some people with neuromuscular conditions. Although there are a few side effects such as pain or irritation where the toxin ins injected and the person giving the injections needs to be skilled in avoiding putting too much too close together, there are almost no long-term side effects of botulin toxin. It is, however, more expensive than other treatments. Often insurance companies refuse to pay for it unless a person has first tried and found other preventive treatments ineffective.

Nerve blocks are procedures in which anesthesia is injected directly into a nerve. These were developed for surgical procedures and treatment of other chronic painful conditions. The person giving the injection, again, must be skilled. There are few side effects, mostly related to where the injection was made and mostly short term. These treatments are also more expensive and also typically paid for by insurance only after oral preventive medications have been tried.

Conclusion

There are many options that can be tried for reducing the frequency and severity of migraine attacks when they occur. Lifestyle changes that promote overall health can also reduce the frequency and severity of attacks. Unfortunately, no drug is known to prevent all migraine attacks, so most people also use acute medications for when attacks still occur.

Managing Migraine With Lifestyle Changes

Although migraine is a complex brain disease not fully understand yet, much has been learned in the last decade. Increased knowledge has led to better understanding and new ways of managing and treating migraine to reduce the frequency and severity of attacks. There are two main branches for managing migraine: lifestyle changes and medical treatments. Most people with migraine benefit from using both. This article covers lifestyle changes. For medical management of migraine visit our information on acute treatments and preventive treatment.

Lifestyle Changes

Migraine is one of many brain conditions that have become better understood recently. There is new evidence that overall brain health is promoted through exercise, a healthy diet, healthy sleep, socializing with others, and keeping mentally active. Many of the same brain-healthy activities also help reduce the frequency and severity of migraine attacks. There is a memory tool—the word SEEDS—to help people remember ways to succeed when living with migraine.

Managing-Migraine-w--Lifesytle-Changes-logo

S is for Sleep

The most important aspect of sleep for people living with migraine is to make it as regular as possible. Sleeping in late, not sleeping, or sleeping at different hours than usual have all been shown to make migraine worse. Having the same bedtime and getting up at the same time every day of the week is a key component of promoting brain health. Sleep experts suggest 7 to 8 hours of sleep per night is healthy for most people.

E is for Exercise

Exercise is known to promote brain health and reduce migraine frequency. From yoga to regular walks to a vigorous workout in a gym (when it is safe to go to the gym!), regular exercise of any kind promotes overall health and helps with migraine.

E is for Eating (and Drinking!)

Eating a healthy diet of mostly fruits and vegetables and low-to-moderate amounts of unsaturated fats and animal protein (sometimes called a Mediterranean diet) has also been shown to promote brain health in multiple studies. For people with migraine, there are a few important additional tips:

  1. Try to have a glass of water (1 cup) every 3 to 4 hours. Not drinking enough water and becoming hydrated can trigger migraine attacks.
  2. Avoid caffeine or consume only moderate amounts and do not drastically change how much caffeine is consumed day to day. Big changes in caffeine consumption can trigger migraine attacks.
  3. Use alcohol only in moderation and avoid “binge” drinking. Alcohol causes dehydration and can trigger attacks just like not drinking enough water.
  4. Learn any foods or drinks that are personal triggers and try to avoid them. Triggers for migraine attacks vary from person to person. Keeping a diary (see D is for Diary) can help a person learn their own triggers (if they have them) so they can avoid them when possible.

D is for Diary

Lifestyle changes are great ways to promote health, but not every aspect of life can be controlled. We all want great sleep, and most of us try to exercise and eat well, but these things are much easier to say than do. Keeping a migraine attack diary helps a person with migraine understand what might be triggering attacks (eg, difficulty sleeping, not drinking enough water, or stress). Keeping a migraine diary also helps a person’s doctor understand what is happening with the attacks and whether treatment might need to be changed. A migraine diary should track not only when an attack occurred and how severe it was but also how long it lasted and whether and for how long it prevented activities. Sleeping, eating, drinking, and stress level should also be tracked.

S is for Stress Management

Managing stress is also easier to say than do, but it is possible to manage stress, at least partially. Taking time for the first four letters of SEEDS can help with the last letter of SEEDS. Other methods known to be helpful are mindfulness practices, meditation, and breathing exercises. Help is available for stress reduction from licensed counselors and therapists, and when those individuals are not available, from simple smart phone apps.

Conclusion

There are many ways an individual with migraine can promote their own health to hopefully reduce their attacks. The bonus is that all of them promote overall health too! Managing migraine can be part of living a person’s best life. For most people with migraine, it will be only a part and medical treatments should also be explored.

Study Finds New Type of Psoriasis Cream (a PDE-4 inhibitor) Effectively Clears Plaques

Psoriasis Cream

There are a many different treatments for psoriasis, an autoimmune condition characterized by red, scaly skin patches.

PDE-4 inhibitors, a relatively new class of medication, work by targeting an inflammatory enzyme called phosphodiesterase type 4 (PDE-4). In 2014, the U.S. Food and Drug Administration (FDA) approved apremilast (Otezla), a PDE-4 inhibitor that is taken orally.

But there’s evidence that the same enzyme can be targeted via topical treatments, such as creams and ointments. The latest: An investigational cream called roflumilast beat a placebo cream in a phase 2b study. (Investigational means that the drug is not yet approved for this purpose.)

The research, which was published in the New England Journal of Medicine, entailed randomly assigning 331 patients with plaque psoriasis to three groups.

  • One group was given roflumilast 0.3 percent cream
  • A second group was given roflumilast 0.15 percent cream
  • A third group was given a placebo cream

All participants were instructed to apply the provided cream once a day.

After six weeks, 28 percent of those using the highest concentration (0.3 percent) roflumilast cream had clear or almost clear skin, as did 23 percent of those in the other roflumilast group. Only 8 percent of those using the placebo cream had improved as substantially.

Side effects, such as upper respiratory infections, seemed to be mild to moderate.

The authors acknowledge that “longer and larger trials are needed to determine the durability and safety of roflumilast in psoriasis.” A phase 3 trial is already underway.

Lebwohl MG. Trial of Roflumilast Cream for Chronic Plaque Psoriasis. The New England Journal of Medicine. July 16, 2020. doi: https://doi.org/10.1056/NEJMoa2000073.

Monaco K. Psoriasis Cream Succeeds in Early Trial. MedPage Today. July 15, 2020.
https://www.medpagetoday.com/dermatology/psoriasis/87585.

Otezla Approval History. Drugs.com.
https://www.drugs.com/history/otezla.html

The 5 Worst Things People Say Because of Migraine Myths

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  1. “It’s just a headache.”

No matter how many times you have heard these words or perceived this attitude from someone else, your migraine is so much more than just a headache. Not only is a headache not the only symptom of a migraine attack, it is also not mild or just anything.

Migraine is a serious neurologic disorder that by definition has pain in the head and neck that lasts between 4 hours and 3 days that a person has had at least 5 times in their life and is often on only side of the head and/or neck, is often pulsating or throbbing, and made worse by moving. Migraine also comes with at least one of the following, nausea and vomiting, sensitivity to light (photophobia), and/or sensitivity to sound (phonophobia).

So, let’s break that down… pretty bad pulsating head pain while I feel like puking and being anywhere other than a dark room physically hurts? Just a headache? No, we don’t think so. People with migraine deserve care and support when this happens, they do not deserve to be brushed off.

Plus, those are not the ONLY symptoms—migraine attacks can also come with eye pain, ringing in the ears, dizziness and loss of balance, difficulty speaking, confusion and difficulty, mood swings, and visual disturbances like seeing spots or light patterns or double vision, and others.

Among the many myths that lead people to say, “it’s just a headache” are the ideas that all migraine attacks are the same, all migraine attacks include visual disturbances (auras), and that all headaches are migraine. The truth is that there are a lot of different symptoms of migraine and only about 1 of 3 people with migraine experience aura. The truth is also that not all headaches are the same. Some, like the ones that come with migraine, can be disabling. Others can be emergencies. Some are symptoms of a cold or allergies.

The truth is also that the only time all applies to migraine or headache from any cause is when we say all people in pain or discomfort deserve empathy, sympathy, and care.

  1. Another migraine? Are you sure he isn’t faking?

The first myth embodied by this statement is that men don’t get migraine attacks. Not so. If you put 24 people in a room, 4 of them will be people who experience migraine, and at least 1 of the people who have migraine will be male. Men have migraine attacks and unfortunately are less likely to receive care for their migraine because of this myth.

Another myth in this statement is that migraine does attack frequently. Of the 1 in 6 people who have migraine, most have an attack every 2 to 4 weeks, many have attacks 4 or more times per month. One of every 100 people with migraine have more than 15 migraine attacks per month—that’s every other day, and although 1% might not seem like a lot, because of how common migraine is, that’s actually 4 million people who have a migraine every other day or more.

The idea that someone who is sharing their migraine pain with another is probably faking it is also simply untrue. This is an old myth that probably comes mostly from people not understanding what they can’t see—even doctors, who used to think that migraine was psychological or related to having a “high-strung, nervous” personality type. Modern medicine has learned that migraine is biological and genetically influenced. That is, migraine runs in family and can be treated with medicine that affects nerve cells.

Here, the truth is perhaps not so simple. We don’t know yet exactly what causes migraine and the only way we can tell that someone is in pain is if they say so. Still, we do know that migraine isn’t a psychologic disorder “just in their heads,” or it wouldn’t run in families.

Most of wouldn’t want anyone to our experience of pain, so questioning someone else’s makes little sense.

  1. “She’s not back at work yet? I didn’t think a migraine could last that long (smirk).”

People make this dismissive statement both because they fear a colleague is shirking work or because they really believe migraine attacks do not last long or are not serious.

The seriousness of migraine and the issue of questioning another person’s difficulties and pain have both been discussed already, but let’s talk about the idea that migraine attacks don’t last that long. There are four phases that a migraine attack can have: the prodrome, aura, headache. and postdrome. Not every migraine attack will have every phase; for example, some people never have aura and others never have predrome or postdrome. There are even some people with migraine attacks that don’t include the headache phase—proving again that migraine and headache do not mean the same thing! When they do occur, prodromes can be days long or just a few hours, aura is usually 5 to 60 minutes, the headache phase is usually 4 to 72 hours, and the postdrome is usually 24 to 48 hours. Together that means a migraine attack can, and often does, last several days or even a week.

It is true that migraine leads to needing to take days off work. In fact, migraine is the 6th or 7th leading cause of disability worldwide. Some people use up all their sick time and then have to show up even when they have an attack; those days are certainly not productive ones. Others lose their jobs or can’t find work because of their migraine attacks. This doesn’t mean people are “playing hooky” though. A 2019 Health Union report showed that 63% of people with migraine had to cut back on enjoyable leisure activities and 50% say they constantly worry about letting others down.

Put shortly, migraine is not just an excuse to get out of things.

  1. “Ugh. . . I did the wrong thing and now I have a migraine attack to pay for it!”

Sometimes we say the worst things to ourselves, and that negative self-talk is almost never true. People do not give themselves migraine or have a personality prone to migraine, and there are underlying genetics, which none of us can control, that play a large role in whether or not a person experiences migraine.

People with migraine can do things that make it less likely they will have an attack. Getting enough sleep, exercising, practicing mindfulness, staying hydrated, and eating a nutritious diet have all been shown to reduce frequency of migraine attacks.

There are other experiences that are likely to trigger migraine attacks, but these are very individual, and sometimes people with migraine have no specific triggers—the attack simply happens. Keeping a migraine diary can help people know what things they do or don’t do that make an attack more likely, like skipping a meal or eating something specific.

That doesn’t mean a person who got a migraine attack after a night of poor sleep or eating out is to blame for the attack. No one is.

  1. “Just pop a painkiller and power through this. We need you.”

If people need the contributions of someone who is living with migraine, the best thing they can do is encourage the person with migraine to take proper care of themselves. Powering through doesn’t make migraine better, and over-the-counter treatments (a pain pill), if used to often, can actually make migraine worse and attacks more frequent.

A migraine attack is serious and disabling as discussed, and people with migraine have higher rates of heart disease, stroke, and suicide (Please ask for help if you feel this way: https://suicidepreventionlifeline.org/). Anyone who has headaches once a month or more should seek the help of health care professionals to properly diagnose and treat those headaches. Going it alone or just powering through isn’t helpful.

 

 

The real truth is that migraine is a common and serious disabling neurologic condition.

It is not in someone’s head; it is in their brain. For most people with migraine, the attacks become more frequent over time if they are not treated properly. The good news is many treatments are available; the bad news is that there are not enough migraine specialists to treat everyone with migraine. However, primary care physicians and nurse practitioners can provide good headache care, especially when their patients are knowledgeable about the myths and realities of migraine and other causes of headaches.

 

Sources:

2019 Health Union Report on Migraine. https://health-union.com

Headache Classification Committee of the International Headache Society (IHS). The international classification of headache disorders, 3rd edition. Cephalalgia. 2018;38(1):1-211. https://doi.org/10.1177/0333102417738202 or https://ichd-3.org/1-migraine/

Burch R, Rizzoli P, Loder E. The prevalence and impact of migraine and severe headache in the United States: figures and trends from government health studies. Headache. 2018;58(4):496-505. https://doi.org/10.1111/head.13281