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  • About Polymyositis
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    Community Voices
    Community Voices

    I Have No Immune System: I Am the Reason COVID-19 Masks Still Matter

    I don’t know anyone who isn’t experiencing some form of pandemic fatigue. That’s just the reality. It would be nice to see one another’s faces, gather in large groups, attend concerts, travel like we used to (without fear), not have raw skin from washing so frequently, and just not have to be concerned about the virus. I know these examples are truer for some of us than others, and we have all been impacted by this virus. In March, my state (Oregon) lifted our indoor mask requirements. This week, I received my fourth COVID-19 vaccine. As I write that, it’s easy for me to imagine how someone reading it could think, “Wow! Four vaccines, she’s really protected!” However, things are not always what they seem. Let me give you some context. In my late 30s, I got mono and never seemed to recover. What started out as a virus turned into a “post-viral condition,” that became myalgic encephalomyelitis . This is much like what happens to people who get long- COVID . From there things snowballed, and I was diagnosed with fibromyalgia . Within two years, I contracted an autoimmune disease called polymyositis , which is a muscle-wasting disease – muscle dissolved off my bones at an alarming rate, leaving me unable to stand from a seated position, walk without assistance, or roll over in bed. This disease is part of a cluster of autoimmune diseases called antisynthetase syndrome. In two years’ time, my lungs were turning into scar tissue, I was using oxygen full-time and was referred for a double-lung transplant . My team of doctors has been able to slow the progression of my lung disease and keep me stable enough to get off the transplant list, although I live with about 17% lung function. In order to accomplish this, I take 33 pills each day to maintain the relative stasis I’ve reached over these last 11 years. Also, I receive IV medication to keep my immune system from attacking me so vigorously. The main action of the IV meds is to target a protein (CD20) on my B cells to keep them from maturing and deplete the overall number of B cells in my body. Because B cells are a big part of our protective immune system, they help us fight. In my case – that often means they are fighting me. Unfortunately, B cells are a major part of how vaccines replicate and protect us. If you’ve hung in here with me so far, perhaps you can see the problem. If I don’t have B cells, and the ones I do have aren’t mature, how can the vaccine effectively work in my body? The short answer (after years of studying the COVID vaccine and others): it can’t! In bodies like mine, vaccines do not effectively produce antibodies for my body to “remember” and fight the virus, as numerous studies have shown. In one of these studies, the effects of the vaccine in people taking my medication were described as “statistically insignificant.” That’s why the CDC keeps allowing us to get boosters – with the hope that we might produce some antibodies. “ I often get sick when no one else around me is.” So, when I hear “we’re dropping our mask mandates,” (as is now true across the nation) and “offices are returning to in-person work,” (without social distancing requirements) and that companies like JP Morgan Chase and others are no longer requiring employees to report COVID infections, I’m scared for my life. I’m not sure I would survive getting COVID-19 . All this at a time when the newest variant, BA.2, was described by the World Health Organization as “substantially more transmissible” than Omicron. I receive my IV meds at an infusion clinic within my rheumatologist’s office. Until quite recently (because of a mandate by our governor) many of the staff were unvaccinated. While I understand the matter of choice when it comes to vaccines, 100% of the population those four nurses serve are immunosuppressed, immunocompromised, or both. In cases such as this, it seems outrageous we don’t require the vaccine. By contrast, because I still get other treatment at my large transplant hospital, I have seen some of the best and most effective COVID protocols in place since the beginning of the pandemic. When I go to my infusion clinic, their standards have, at times, seemed feeble by comparison: not requiring the vaccine, not testing staff (ever), allowing cloth/personal masks rather than surgical or N95 masks, etc. I’ve requested changes and have been in touch with the manager of the facility. My fears were realized when, shortly after one of my IV treatments, one of the nurses came down with COVID . At this point, it seems like choosing to go to the infusion clinic to receive IV medications that are saving my life, means potentially putting my life at risk. It is a lousy way to feel. Now that mask mandates are changing, my very limited ability to leave the house for occasional outings for a bit of shopping or something social has ended abruptly. With such a severely suppressed immune system, I often get sick when no one else around me is. My wife brings home a cold that her system is strong enough to fight, I pick up something from hugging a friend that they weren’t even sick with. Much like what scared us early on about COVID , you can have it and not know it. And as a person who’s vaccinated or not, you can carry bits of the virus around and not be sick with it. We know face masks are an effective way to prevent the spread of COVID-19 and other airborne diseases. If you’d be willing to wear one when you’re out in public, it might help save my life. When we’re both wearing a mask, the likelihood of disease transmission decreases even further. Perhaps my story sounds extreme to you, but surely there’s someone in your life who has a child with cancer , an aunt on dialysis, or an elderly relative. Remember in the 80s when businesses had the “No shirt. No shoes. No service.” signs? We are all wearing shirts and shoes when we go out; what’s a bit more cloth? I’ll tell you what it is, it’s a somewhat inconvenient but compassionate, and thoughtful, choice to consider all our health and well being.

    Community Voices

    Life is a balance between letting go and holding on

    <p>Life is a balance between letting go and holding on</p>
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    Community Voices

    Concerned my RA is actually polymyositis. Muscles hurt like crazy. Can anyone tell me what it feels like? How did you find out? Waiting blood test.

    Community Voices

    "How Are (Really) Feeling?#ChronicPain
    #Myositis ,

    Yes, you !

    One thing, one Really Big LittleThing, that I said, starting as a child, was (when asked how I felt?)

    (pick just one,)

    -not too bad
    -a little sore
    -kind of tired
    -having tummy trouble
    a little sleepy,

    And then, I always said, "and how are you"?
    I turned it back.
    (because having attention focused on me, gave me anxiety). Why?

    My Momma had made it painfully clear, just how aggravated she was when I was sick or home from school. I was sick a lot, especially from 1st to 9th grade. Streph, EBS, Bronchitis, Allergies, Colds. Aches, sprains, broken bones. She also hated driving, and Drs., So I was usually treated by a phone call, and an RX for Amoxicillin.

    I always cared more for others, and I really wanted to be happy, active, an asset, loved, appreciated.

    But, my mistake was that of being afraid to push others away if I were to be negative, or honest, about how I was.

    That little habit turned out to spite me, by making me "sound" stronger or healthier mentally and physically, than I really was.
    People wanted to be released from having to care about it.

    So, when I started needing those same people to hear me, to realize that I felt worse, or my condition was/is really serious, they found it hard to process.

    All my years of saying, "I'm Okay", had Brainwashed them into refusing to think that I was not "Okay, or Just Fine, or Well Enough". So, Then, when I did limp, or crash, I felt like they saw me crying wolf! Poor Me!

    My desire to make things easier for everyone else, cost me my family, and my nice life. Because for 25 years I've been increasingly deteriorating, but they don't have time, anymore, or compassion, or empathy, to see how much I truly need them.

    Don't Sugarcoat your feelings. If they seem too sharp to share; If you can't get the right thoughts out, try writing them as letters, or using a journal that you could share, at times. Stick up for yourself!

    And there may be times where you have to call your problem, an "8-9", instead of a "3-4", so they sit/get up or notice, you Really need help. You really Deserve it! So do I.
    #MixedConnectiveTissueDisor -ders

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    Community Voices
    Community Voices

    Happy Friday. I was recently diagnosed with Polymyositis ( PM) are there any others with PM on this site? I'm interested in connecting.

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    Why We Need More Myositis Awareness

    Myositis is a group of inflammatory myopathies that are most commonly thought to impact the muscles (which they do) but they can also affect the heart, lungs, GI tract, and be associated with the development of cancer. Myositis is considered autoimmune in nature; the body begins attacking its own muscles, connective tissue, skin, blood vessels and other organs. It is estimated that between 50-75,000 people in the U.S. have one of the forms of myositis. This makes it among the rare diseases. As such, there are no dedicated treatments or therapies that have been developed specifically for any of the inflammatory myopathies. Broadly, there are three main types of myositis: dermatomyositis, polymyositis, and sporadic inclusion body myositis. Typically, the easiest to diagnose because of its hallmark, purplish, skin rash, is dermatomyositis. The rash that accompanies dermatomyositis most often forms on the face, upper back, chest, elbows, knees and knuckles. It is more typical for muscle weakness to come later in the progression of dermatomyositis. After the disease process starts to take hold, vasculitis, or swelling of the blood vessels, begins to cause the muscles closest to the core of the body to become weakened. It is most common for muscle weakness to be symmetrical and progressive. As with polymyositis, the kinds of drugs used to treat dermatomyositis are typically immunosuppressive and anti-inflammatory drugs. Often, high-dose prednisone is used to try and halt the disease’s rapid progression, while drugs like azathioprine, mycophenolate, and methotrexate might be used for long-term treatment. Sporadic inclusion body myositis (sIBM) is the most common of the inflammatory myopathies and generally impacts individuals after the age of 50; because of its slow progression, experts aren’t actually sure that’s when the disease typically starts, but it is most commonly diagnosed after that age. Unlike other forms of myositis that may be relapsing/remitting in nature, sIBM is progressive — the body is continuing to atrophy once the illness has been acquired. This form is distinct in a couple of other ways too. Unlike other forms of myositis, the weakness in sIBM is not necessarily symmetrical in its presentation. Also, rather than wasting that begins with the proximal, or core muscles, sIBM often begins with distal muscles like the feet, hands, ankles and lower legs. Having difficulty with falls, balance, or drop-foot are common complaints at the onset of sIBM. The symptoms of sIBM and rate of progression varies significantly from person to person and can speed up or slow down over time with little rhyme or reason. Because of its many faces and how difficult it is to diagnose, patients with sIBM often go undiagnosed for many years. Their diseases are also often misdiagnosed as the effects of aging, as multiple sclerosis, or as polymyositis. Polymyositis, like other myotises, is often referred to as a “muscle wasting” disease. Inflammatory cells work into the fibers of smooth (skeletal) muscle tissue and burst the muscles, dissolving them right off the bone. It can be slow or rapid in its progression and can be more difficult to identify because it does not have any external markers (like dermatomyositis’ rash) to make it evident. It is most common for polymyositis to begin, like dermatomyositis, with the core or proximal muscles being symmetrically impacted. I have myositis, and my complaints began with things like, “I’m having trouble rising from a seated position.” I started needing assistance getting off the couch or toilet. Then it progressed to I can’t lift my arms above my head to wash my hair, and eventually the inability to roll over in bed without assistance and having difficulty swallowing. Unfortunately, once muscle fibers are destroyed, they cannot be recreated. Therefore, the rehabilitation after the onset or relapse of the condition (both poly and dermatomyositis are relapsing/remitting conditions) is arduous and contingent upon beefing up what muscle remains. Like dermatomyositis, the drugs used to treat polymyositis are typically immunosuppressive and akin to the drugs given to RA patients. Rheumatologists specialize in the treatment of rheumatologic or autoimmune diseases. Therefore, it is typical for those of us with myositis to have a rheumatologist (if we are lucky) to monitor our condition and treatment. However, I live in a city with a population of approximately 175,000 people and see a very competent rheumatologist and I am his only myositis patient. In addition to seeing a rheumatologist, because of the way these diseases impact multiple systems, it might also be necessary to have a neurologist, dermatologist, and/or cardiologist consult about aspects of the condition. While these diseases are said to not have any genetic link, the only other person I have known with polymyositis is my mother. So… That leads me to believe they don’t have enough evidence to understand what the genetic links of these diseases may be. What is also true is that those of us who have one autoimmune condition are at great risk for having multiple autoimmune conditions. Fun. May is Myositis Awareness Month. Thanks for hanging in here and educating yourself about this rare disease. If you are seeking resources for yourself or a loved one about these muscle-related conditions, you can get more information, you can find connections, and learn from experts at Myositis.org and UnderstandingMyositis.org.

    Community Voices

    The "New Doctor" Dilemma

    I think one of the biggest injustices we face, as rare as we are, is being told to expect that our Primary Care Physician, the person in charge of "managing our health, tests, procedures, results, etc." will actually feel responsible for our progress, or even want to.
    ...."We' are going to be 50x more complicated than their average routine check-up! "We" aren't ever going to fit into that 15 minute slot that they have for us!!
    "We" can't get to the bottom of our conditions, if they keep bailing out on us.

    .... There needs to be another Specialty. Definitely not the Rheumatologist, who often knows a tenth of what we will.
    There needs to be a Category of Interventional Physicians for Auto-Immune and Connective Tissue Disorders. Don't look away, but Yes, it would be like House and his team.
    I chose a new PCP last September, an MD, a DO. Both, which she assured me made her uniquely more experienced to help someone like me. Her biography on line sounded great. I told her that I could help her learn more about these rare Syndromes, and she would become an invaluable member of our medical community!
    ... But, as I started to discuss me, and handed her (the most pertinent tests and documentation), my backstory of tests I had already gone through, she got that "Deer Doctor in My Headlights Look".
    You know the look...the haughty ones will laugh in your face. They might even call a couple students in, to meet you or observe. The less experienced ones will realize that their bluff will be called. Whether by you, or the next Zebra.
    ... She nods with understanding.
    .... She gives my files to the staff to copy.
    .... She spends way more than my alloted time, typing every detail into my patient history.
    I'm excited!! She's listened!!
    She has me do a couple of those Yoga-ish arm to shoulder stretches before I leave, and promises to be in touch as soon as my very first labs come back.

    But, when I next went to my Pt portal, her notes read, " Diana has a VERY COMPLEX CASE". I could feel her crawling under a rock to avoid me. All that hope I had, for just one more PCP who wanted to lead, or even just be on "Team Diane". *Poof* Gone.
    I've just lost valuable time that I spent searching for this new Specialist, or lining up in the queue for months to get in to see them, having anxiety, IBS, and gritting my teeth as I walk into yet another new Drs office, for the same Damn result.
    The negligence I feel, and their deficit in current, updated, relevant education, is terribly disheartening.
    I know I will probably never get ahead of the curve of Western Medicine.

    #EhlersDanlosSyndrome , #sjogrens Syndrome, #Polymyositis , #Dermatomyositis , #Fibromyalgia , #GAD , #MDD , #DDD , #RA , #oa , #AnkylosingSpondylitis , #mixedconnectivetissuedisease, #MCTD , #Rh -Disease, et al.

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