How I Got A COVID-19 Test

Friends, it’s been nearly twelve hours and my nose still hurts.

As I talked about in my last post, I developed symptoms around the 10th-12th. During this time, I messaged my doctor on mychart and asked what the protocol was for getting tested, just in case. By the evening on the 13th, I was pretty convinced that COVID-19 would explain my symptoms but waited on calling.

On the 18th, I called my doctor’s office and had a nurse take notes on my symptoms and possible exposure. She passed that along to the infectious disease team who evaluated my case. They called me back around 2 pm on the 19th, despite being told it could take up to 72 hours. They scheduled me for an appointment today at 11:30.

The Test

I was told to wear a mask into the clinic, so I put on my vogmask and headed to my appointment. Upon arrival, I filled out a form with my symptoms, the date of my last flu shot, and any recent travel. The nurse came up and got me and went through my symptoms. Then, it was time to get down and dirty.

The COVID-19 test is similar to the flu test where they take a swab from your nasopharynx. That means they stick a long Q-tip incredibly far up your nose. Then they have to twist the Q-tip around for ten seconds.

illustration of a nasal swab
Source: https://www.youtube.com/watch?v=DVJNWefmHjE

All I could think about was how pushing too far is a way to kill someone.

It burned and hurt. I can still smell medical smell way up my nose. My ears and throat weren’t pleased, either.

What Now?

I’ll know the answers within 4-5 days. Honestly, I’m leaving a little wiggle room with that amount of time, though, since we’ve officially hit over 200 cases.

Fingers crossed!

Ruminations Before My COVID-19 Test

I’ve been having COVID-19 symptoms for about a week now, though part of that is hindsight. Last week, I began having chills that progressed into a runny nose, sore throat, body aches, fatigue, minor cough, and fever. The local infectious disease peeps have determined that I need to be tested, and I’m definitely grateful for that!

I go tomorrow at 11:30 am for my nasal swab. I’ve heard it’s not very comfortable, so I’m not looking forward to it by any means.

I am scared. I’m scared of what the test might mean with either result. I’m worried about what else might be going on, should the test be negative…

But I’m terrified for what it might mean if it’s positive.

My symptoms haven’t been as severe as many people’s, but I think I know why. Rheumatologists and other doctors have hypothesized that kineret might help eliminate the cytokine storm COVID-19 causes that is often fatal. Why? Well, Macrophage Activation Syndrome is essentially a similar bodily reaction, and kineret treats that. Sobi, the drug’s manufacturer is running a clinical study to test this out. Throughout this time of being ill, I’ve continued to do my shot, and I really feel as though it’s made a major difference.

My partner doesn’t have my medication and has some different symptoms, including a nasty cough that we’re managing with a suppressant. I’m concerned about their symptoms and hope they’re able to get tested soon, too.

Despite all the change and turmoil I’ve been through in the past year, it really has been the best year. I’ve figured out who I am – including starting testosterone on January 23rd to be more masculine and affirm my gender identity. I learned more about how to care for my body and mind. I started a job I enjoy, despite how emotionally draining and underpaid it is. Hell, I started playing hockey, too, and I love every single minute of it. And, saving the best for last, I found a partner who sees me for me, laughs at my jokes, and whom I adore.

All of that makes this fear of what might happen more… salient. I know I’m not that healthy in the eyes of ableds and would likely be on the chopping block, should the US resemble Italy anytime soon. I know my life wouldn’t be as valuable to the economy or providers, etc… But I also know that I feel like I’ve just started truly living it as myself. To have it threatened because of capitalism and a pandemic is terrifying.

Most of all, I’m afraid for my partner. If something happens to me, I know they’ll be okay but they won’t be happy. If I’m sick, they’re guaranteed to be, too. What if they get really sick? I have seen these thoughts cross their mind several times lately and their anxiety level is so high.

For the first time, I’m far less afraid of death. Don’t get me wrong – I’m still horrified by the idea of dying, but it’s less panic-inducing when the concern is related to Ian or my sister and her kids.

It’s almost cathartic to know I have so much to lose now when it often didn’t feel that way before.

For now, all I can do is try to get some sleep tonight. It’s worse than sleeping as a kid before Christmas, especially given the level of enthusiasm I have for this nasal swab.

Stay safe, friends, and take this pandemic seriously.

ACR Releases First Guideline to Address Reproductive Health for Patients with Rheumatic Diseases

The following is a press release from Monday this week. Note that it contains cisheterosexist language.

Today, the American College of Rheumatology (ACR) published the 2020 Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases. This is the first, evidence-based, clinical practice guideline related to the management of reproductive health issues for all patients with rheumatic diseases. With 131 recommendations, the guideline offers general precepts that provide a foundation for its recommendations and good practice statements.

“This guideline is paramount, because it is the first official guidance addressing the intersection of rheumatology and obstetrics and gynecology (OB-GYN),” said Lisa Sammaritano, MD, lead author of the guideline. “Rheumatic diseases affect many younger individuals; however, little education has been provided to rheumatology professionals on current OB-GYN practices. The guideline [and more detailed online appendices] presents vital background knowledge and recommendations for addressing reproductive health issues in the full spectrum of rheumatology patients, with additional focus on specific diagnoses that require more detailed recommendations such as systemic lupus erythematosus (SLE) and antiphospholipid syndrome (APS).

The guideline provides 12 ungraded good practice statements and 131 graded recommendations that are intended to guide care for rheumatology patients except where indicated as being for patients with specific conditions or antibodies present. Good practice statements are those in which indirect evidence is compelling enough that a formal vote was considered unnecessary; these are ungraded and are presented as suggestions rather than formal recommendations. The recommendations were separated into six categories: contraception, assisted reproductive technology (fertility therapies), fertility preservation with gonadotoxic therapy, menopausal hormone replacement therapy, pregnancy assessment and management, and medication use.

While some of the recommendations are strong, many of the recommendations presented are conditional due to a lack of data. Pregnant women are not generally enrolled in clinical studies; and few maternal health studies focus on rheumatology patients. A few notable recommendations from each category include:

Contraception

  • Strong recommendation for women with rheumatic disease who do not have lupus or APS to use effective contraceptives with a conditional recommendation to preferentially use highly effective IUDs or a subdermal progestin implant.
  • Strong recommendation against using combined estrogen-progestin contraceptives in women who test positive for anti-phospholipid autoantibodies (aPL) or APS

Assisted Reproductive Technology (Fertility Therapies)

  • Strong recommendation for fertility therapy in women with uncomplicated rheumatic disease who are receiving pregnancy-compatible medications, whose disease is stable, and who test negative for aPL. Specific recommendations also address patients testing positive for aPL and suggest an anti-blood clotting procedure.
  • Conditional recommendation against increasing prednisone dosage during fertility therapy procedures in lupus patients.

Fertility Preservation

  • Conditional recommendation against testosterone co-therapy in men with rheumatic disease receiving cyclophosphamide (CYC) and a good practice suggestion to cryopreserve sperm before CYC treatment in men who desire it.
  • Conditional recommendation for monthly gonadotropin-releasing hormone agonist co-therapy for premenopausal women with rheumatic disease who are receiving monthly CYC injections/infusions to prevent premature ovarian insufficiency.

Pregnancy Assessment and Management

  • Strong good practice suggestion to counsel women with rheumatic disease, who are considering pregnancy, on the improved maternal and fetal outcomes associated with entering pregnancy during low disease activity.
  • Conditional recommendation to treat lupus patients with low-dose aspirin daily (81 to 100 mg) starting in the first trimester. For women testing positive for aPL who do not meet the criteria for obstetric or thrombotic APS, it is conditionally recommended to preventatively treat with a daily aspirin (81 to 100 mg) starting early in pregnancy and continuing through delivery.

Menopause and Hormone Replacement Therapy

  • A good practice suggestion to use hormone replacement therapy in postmenopausal women with rheumatic disease who do not have lupus or have a positive aPL test; and who have severe vasomotor symptoms, have no contraindications, and desire treatment.
  • A conditional recommendation for hormone replacement therapy in women with lupus and without aPL.
  • Conditionally recommend against treating with hormone replacement therapy for women with asymptomatic aPL, and strongly recommend against hormone replacement therapy for women with any form of APS.

Medication Use (Paternal and Maternal)

  • Strongly recommend against use of CYC and thalidomide in men prior to attempting conception.
  • Strong recommendation against the use of NSAIDs in the third trimester.

Individuals involved in the development of the new guideline included rheumatologists, obstetrician/gynecologists, reproductive medicine specialists, epidemiologists, and patients with rheumatic diseases. ACR guidelines are currently developed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology, which creates rigorous standards for judging the quality of the literature available and assigns strengths to the recommendations that are largely based on the quality of the available evidence.

“This guideline should open avenues of communication between the rheumatologist and the patient, as well as between the rheumatologist and the OB-GYN,” said Dr. Sammaritano.  “A better understanding of the risks and benefits of reproductive health options will enhance patient care by providing safe and effective contraception, improving pregnancy outcomes by conceiving during inactive disease periods, and allowing for continued control of rheumatic diseases during and after pregnancy with the use of well-suited medications.”

A draft of the guideline was presented during the 2018 ACR/ARP Annual Meeting in Chicago. Since that time, the guideline team has condensed the original three-part draft into a single, concise manuscript, with detailed background and discussion now available online. The guideline development team also incorporated color-coded flow charts to highlight common decision-making points to make it user friendly.

The paper containing the full list of recommendations and supporting evidence is available at  https://www.rheumatology.org/Practice-Quality/Clinical-Support/Clinical-Practice-Guidelines/Reproductive-Health-in-Rheumatic-Diseases.

Seven Medical Societies Join the ACR to Oppose Insurer Policy Limiting Access to In-Office Treatments

The following is a press release just issued by the ACR:

In comments submitted to BlueCross BlueShield of Tennessee, medical societies representing rheumatology, ophthalmology, dermatology, gastroenterology and urology specialists joined the American College of Rheumatology (ACR) to raise grave concerns about a recent insurance trend that requires providers to obtain physician-administered treatments through mail-order specialty pharmacies. Providers are concerned the mandate adds additional layers of red tape that will delay patient care, reduce the ability of providers to ensure therapies have been properly handled and safely stored, inflate patient out-of-pocket costs, and result in an increase of drug waste.

“We have had an alarming number of practices reporting they have been denied the ability to use therapies currently available in their offices to administer patient care quickly,” said Ellen Gravallese, MD, President of the ACR. “Rheumatology patients receiving in-office treatments typically have debilitating conditions such as rheumatoid arthritis that cause severe pain, inflammation, joint immobility and deformity. The decision to use a more potent infusion or injection therapy often comes after patients have failed less potent prescription drugs and have continued to show signs of disease activity and/or progression. Finding an effective treatment quickly is imperative, because joint damage progresses in the setting of continued inflammation, and we cannot reverse damage once it has already taken place.”

Under the current model of care, rheumatology providers secure in-office treatments at the lowest price possible through negotiating periodic bulk purchases directly from manufacturers and storing the medications in-house to make them readily available. Once needed, the treatments are administered under provider supervision to watch for adverse reactions due to their potency. The new policy proposed by BlueCross BlueShield would mandate patients and/or physicians obtain the treatments from the insurer’s preferred specialty pharmacies instead and wait for them to be shipped to the provider, so that the insurance company can take advantage of rebates negotiated by their pharmacy benefit manager (PBM).

PBMs are hired by insurers to manage their drug benefit programs and have been receiving increased national scrutiny that has reached the U.S. Supreme Court for their lack of transparency around rebates and where “cost-savings” are going while prescription drug prices, insurance premiums and out-of-pocket costs for patients continue to soar. The controversial role of PBMs and the lack of reduced out-of-pocket costs for patients were focal points of the ACR’s 2018 Rheumatic Disease Report Card.

Providers are concerned this new insurance practice will increase administrative burden due to one-off procurements through multiple specialty pharmacies and will reduce confidence that the medications have not been exposed to high temperatures. Additionally, remaining doses of the drug would have to be thrown away if a patient is unable to use the medication for any reason (i.e. infection, change in medical history or intolerance/ineffectiveness) due to it already being assigned to one individual.

The specialty groups also expressed concerns that many providers will not be able to take on the additional costs of greater administrative burden and reduced efficiency in prescribing, nor the liability around administering drugs for which they are unable to confirm the handling prior to reaching their office, thereby requiring patients to look for care in other treatment settings that carry higher out-of-pocket costs.

“The predictable result of this policy will be a shift in site of care for your patients’ infusions to a more expensive hospital outpatient setting, which may serve as a significant barrier to their access…” the letter states. “Not only will treatment costs be higher in the hospital setting, but there will be a predictable minority of patients who due to their inconvenience, the higher out-of-pocket cost, or simply fear of the unknown, will drop their treatments when transferred to this setting, and their overall healthcare costs will predictably rise as their diseases flare.”

The letter goes on to share that some patients may lose access altogether, because not all hospital facilities accept medications from outside specialty pharmacies, and that any savings to insurers that were derived from PBMs negotiating drug prices for their specialty pharmacies would likely be offset by drug waste and higher point-of-care costs.

The comment letter was signed by the American Academy of Ophthalmology, American Academy of Dermatology, American Gastroenterological Association, American Urological Association, Coalition of State Rheumatology Organizations, Alabama Society for Rheumatic Diseases and Tennessee Rheumatology Society.

ACR & AF Release Updated Treatment Guideline for Osteoarthritis

The following is a press release from the ACR from today:

Today, the American College of Rheumatology (ACR), in partnership with the Arthritis Foundation (AF), released the 2019 ACR/AF Guideline for the Management of Osteoarthritis of the Hand, Hip and Knee. The ACR periodically updates guidelines to reflect any advances in management added to the literature since the last publication, which in this case was 2012.

Osteoarthritis (OA) is a common rheumatic disease that affects the entire joint, involving the cartilage, joint lining, ligaments, and bone. It is characterized by breakdown of the cartilage (the tissue that cushions the ends of the bones between joints), bony changes of the joints, deterioration of tendons and ligaments, and various degrees of inflammation of the joint lining (called the synovium). According to the Arthritis Foundation, approximately 27 million Americans suffer from the disease. Establishing effective management and treatment for OA is an ongoing goal in rheumatology.

“Patients with osteoarthritis can vary quite a bit in how the disease affects them. They might have a single joint, a few joints or many joints that are involved where symptoms can occur throughout adult life,” said Sharon Kolasinski, MD, a practicing rheumatologist who served as lead author for the guideline update. “The new guideline recognizes not only the variety of clinical presentations of OA, but also the broad array of treatment options available.  Clinicians and patients can choose from educational, behavioral, psychosocial, mind-body, physical and pharmacological approaches. It’s important to remember that treatment for OA is not one size fits all. Over time, various options might be used then reused or changed in response to a change in the patient’s symptoms.”

For the first time, the new guideline incorporates direct patient participation in its development. OA patients, who were recruited through a partnership with the Arthritis Foundation, were especially instrumental in emphasizing the role of shared decision making when choosing treatment options such as those with conditional recommendations.

“We are proud to have been involved in this work and to facilitate the important contributions of the patient and parent partners,” said Cindy McDaniel, Arthritis Foundation’s Senior Vice President of Consumer Affairs. “Their lived experiences truly helped to guide this project.”

Between the extensive literature review and patient insight, the updated guideline includes several differences since the 2012 recommendations. Of note, exercise remains an important intervention in the updated recommendations, with a strong body of literature supporting its use for almost all patients with OA. Below are other recommendations included in the update:

  • Strong recommendations (previously conditional) for self-efficacy/self-management programs, use of tai chi for knee and hip OA, topical NSAIDs for knee and hand OA, oral NSAIDs and intra-articular steroids for knee and hip OA.
  • A new conditional recommendation for balance exercises for knee and hip OA and duloxetine for knee OA.
  • A conditional recommendation for using topical capsaicin in patients with knee OA (previously conditional against).
  • New conditional recommendations for using yoga, cognitive behavioral therapy, radiofrequency ablation and kinesiotaping for first carpometacarpal and knee OA.
  • A conditional recommendation against using manual therapy with exercise for knee and hip OA (previously was conditionally for usage).
  • A strong recommendation against transcutaneous electric nerve stimulation for knee and hip OA (previously was a conditional recommendation).
  • A new conditional recommendation against using intra-articular hyaluronic acid injections in first carpometacarpal and knee OA.
  • A new strong recommendation against using hyaluronic acid injections in patients with hip OA.

Additionally, recommendations were made against the use of bisphosphonates, hydroxychloroquine, methotrexate, PRP injections (in hip and knee OA), stem cell injections (in hip and knee OA), tumor necrosis factor inhibitors and interleukin-1 receptor antagonists. “A number of agents have been tested and fail to show adequate benefit to justify their use, while others will require additional investigations to clarify their place in the OA armamentarium,” said Dr. Kolasinski. “The recommendations against usage of these therapies reflects the fact that pharmacologic options remain limited for the management of OA. A broad suggested research agenda is outlined in the guideline to address this gap.”

The paper containing the full list of recommendations and supporting evidence is available at https://www.rheumatology.org/Practice-Quality/Clinical-Support/Clinical-Practice-Guidelines/Osteoarthritis

Calling All JA Kids & Parents!

I found this gig though Savvy Cooperative.

A company is looking for parents/guardians of children and teens (age 10-17) with psoriasis, juvenile arthritis, or related rheumatic conditions to accompany their child to a one-time, 45-min, in-person usability study testing autoinjectors happening in January/February at various locations across the country. Participants will be asked to handle an autoinjector and simulate an injection into a pad, participants will NOT actually perform an injection on themselves. (Note: this study is not a clinical study).

**PLEASE READ REQUIREMENTS BELOW**

  • Parent/guardian of a child ages 10-17 with a clinical diagnosis of one or more of the following conditions (NOTE: preference may be given to the first three diagnoses):
    • Psoriasis
    • Juvenile psoriatic arthritis
    • Enthesitis-related arthritis
    • Polyarticular JIA
    • Systemic JIA
    • Oligoarticular JIA (formerly pauciarticular JIA)
    • Psoriatic arthritis
    • Ankylosing spondylitis
    • Rheumatoid-factor-positive polyarthritis
    • Rheumatoid-factor-negative polyarthritis
    • Undifferentiated arthritis
    • Juvenile systemic lupus erythematosus
    • Juvenile lupus nephritis
    • Juvenile systemic sclerosis
    • Other subtypes may apply
      (Proof of diagnosis will be required to participate)
  • Able to travel to one of the cities listed below
    (additional travel reimbursement not available)
  • Fluent English speaker, but does not need to be the primary language
  • U.S. citizen

Details:

  • Usability testing in-person (~ 45-minutes) in
    • Charlotte
    • Cincinnati
    • Columbus
    • New York City
    • Philadelphia
    • Baltimore
    • San Jose
    • Seattle
    • Portland

This will take place between January/February 2020 (specific dates dependent on location).

Those who participate will receive $200!

To learn more, click here.

ACR and EULAR Release New Classification Criteria for IgG4-Related Disease

The following is a press release dated today from the ACR:

The American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) released the 2019 ACR/EULAR Classification Criteria for IgG4-Related Disease. It is the first criteria developed specifically for this recently recognized disease.

A draft of the criteria was presented during the 2018 ACR/ARP Annual Meeting in Chicago. Since that time, the criteria team performed a second validation study, which confirmed the high sensitivity and specificity that was found in the first validation study.

IgG4-Related Disease (IgG4-RD) is an immune-mediated disease that may affect different organ systems and often mimics other diseases like Sjögren’s syndrome, pancreatic cancer, granulomatosis with polyangiitis (GPA), giant cell arteritis (GCA) and systemic lupus erythematosus (SLE or lupus). Only recognized in the last 10 to 15 years, IgG4-RD can cause fibro-inflammatory lesions in nearly any organ or multiple organs. Estimates suggest that IgG4-RD affects 180,000 people in the United States and many more worldwide.

“IgG4-RD is now recognized to be a worldwide condition that is seen not only by rheumatologists but also generalists and sub-specialists of nearly every kind,” said John H. Stone, MD, MPH, professor of medicine at Harvard Medical School and director of the international panel of experts who developed the new criteria. “Clinical trials are now being developed in IgG4-RD and investigators need criteria on which to base patients’ inclusion or exclusion for such trials and other types of investigation.”

Classification criteria allow researchers to accurately identify patients for inclusion in clinical, epidemiologic and basic investigations. The panel of experts who developed the new classification criteria included investigators from rheumatology and other specialties from five continents, reflecting the worldwide impact of this disease.

In the criteria, classifying patients with IgG4-RD is a three-step process that carefully assesses data from four domains, which must make sense in the context of IgG4-RD. The process includes synthesizing information from the patient’s clinical presentation, blood test results or serology, radiological findings and the pathology data. Few other diseases require such careful synthesis of various information to get an accurate diagnosis, and at this time, there is no single diagnostic test for the disease.

The 2019 ACR/EULAR Classification Criteria for IgG4-Related Disease were validated in a large cohort of patients and demonstrated excellent test performances. Dr. Stone feels they should be a highly useful contribution to future investigations in this disease, and will ultimately help improve the lives of patients with IgG4-RD.

“IgG4-RD is a disease that tends to afflict middle-aged to elderly individuals and often affects and damages the pancreas severely, making glucocorticoids a suboptimal therapy for this condition,” Dr. Stone says. “Clinical trials will help develop targeted therapies that spare toxicities from conventional treatments. Investigators need to have criteria like this to determine whether a patient should be classified as having IgG4-RD.”

Dr. Stone is a professor of medicine for Harvard Medical School and the Edward A. Fox Chair in Medicine at Massachusetts General Hospital.

Love, Burlesque, and Hockey – Oh my!

Back in July, I got settled into my own place. It’s felt both odd and liberating to make it my own. T and I are working through the divorce paperwork now and are being friendly.

In the time since being on my own (or as the marriage was ending at least), I’ve done a few things I’m really proud of.

 

The first? I started dating someone I am very in love with. They are also nonbinary, queer, and a Taurus. We get along so well. I’ve never had the types of interesting conversations we have with anyone before. We embrace being silly, provide each other with emotional support, and… well, we have really great sex.

On top of that, they see me as I really am! I’m able to be completely vulnerable with them in a way I never have with anyone. I straight up brought up MAS the other day in person with them and talked about it. If you’ve been reading the site for a bit, you’ll know I started blogging to explain anything and everything about SJIA to the ex because 1) he didn’t really listen, and, 2) I was afraid to share a lot with him. But Ian? I could (and do) make comments about anything and everything. They’ve helped me through so many panic attacks and rough physical days, too. They’re really great.

Go figure, it took dating someone else dealing with chronic illness and being a part of the LGBTQ+ community for me to really feel seen.

My sister says I’m more myself than I’ve been in ages, and she’s right.

 

Before the breakup, I had set up a boudoir shoot with a friend. It turned into an amazingly affirming experience to model for her. Here’s one of my favorite pics (more to come):

a B&W close up of K outside with their eyes closed

 

Embracing the sexy side of me also saw me starting dance classes! Yeah, I know! I took belly dance and burlesque… and then, last Saturday, had my first burlesque performance. It went really well, and I can’t wait until the next one. It’s weird, but being topless in front of people wasn’t nearly as scary as I thought it would be!

selfie of K wearing cat attire and sticking their tongue out

 

Now, you read hockey in the title. I know some people might be a little concerned about what that means for me, haha.

I am playing hockey with my arthritis.

K wearing hockey gear and skating; they are about to receive a pass

I’m playing with a local LGBTQ league – the largest one in the world. It’s kicking my ass but in the best way. I’ve gone from being unable to really stand on skates to being able to skate, albeit slowly.

It’s been a lot of hard work. I’ve spent a ton of time in the gym and skating and doing other exercises. I’ve done a lot of squats, haha. My physical therapist has been giving me exercises to strengthen the muscles I needed to work most on.

Naturally, being me, I’ve had two pretty rough falls. The first saw me pull some muscles. The second saw me bruise my tailbone. The latter was last Sunday and my butt is still a little sore, but it’s amazing how different my body feels. Sure, these injuries haven’t been awesome. At the same time, the pain is almost… enjoyable? It’s because I’m doing something other than just existing.

The changes in my body are just phenomenal. I’ve lost a good amount of weight, gained a bunch of muscle, and am so much stronger.

Our first game is Nov 3rd and I’m so excited. I’ll be sharing goalie duty with two pals and playing another position (probably one of the wings).

 

I was in Nashville last week with a group of SJIA parents, and it was so amazing to share all of these things I’m doing. To tell them that, yeah, things like playing hockey are possible? Their reactions alone were worth the hard work I’ve put into my physical health since June.

I’m so incredibly happy.