Did Methotrexate Make Me Gluten Intolerant?

Posted on by Grayson

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When I started methotrexate in late 2010, it was rough. I started on the pills and then discontinued them, moving on to biologics. After switching to a new rheumatologist a year later, I tried it again – this time as an injection in conjunction with Enbrel.

About this time is when I noticed that anything containing gluten made me incredibly sick. We ran a Celiac blood test but, as I wasn’t eating gluten, it came back inconclusive.

Since the only treatment for Celiac disease is to maintain a gluten-free diet, I’ve maintained that since late 2012. It’s not always been easy. The advancements in gluten-free products have made it easier. I’ve learned a lot of cool cooking and baking tricks along the way. I have to work more for my food, and that’s a good thing.

Throughout the years, I’ve wondered many things about my inability to eat gluten. Why did it come on so suddenly? Is there a reason it continues to last? Why did it come on when it did?

I recently came across a few journal articles that might shed light on that.

Apparently, there have been cases where gluten intolerance-like behavior has come on as a result of methotrexate. For most patients, this has calmed down after following a gluten-free diet and discontinuing the medication. These patients were then able to restart consuming gluten.

But I wonder – what is it that these patients have received as far as care that has led to this recovery? Are there patients for whom this never cleared up?

I survived on bread for the longest time. My go-to foods were sandwiches, bagels, and garlic bread. From 2010-2012, I practically lived on pop-tarts and on-the-go pastries or protein bars. What else could have changed during that time period to trigger a gluten issue?

I just don’t know.

If you’ve dealt with gluten intolerance after being on methotrexate, has it cleared up? Is it situational or stress-related? I’ love to hear from you.

New Potential Diagnoses, New Medications, and More Tests

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The last few weeks have been incredibly hectic. I will say, though, that’s hectic in a good way. After putting up with issues for a while, I’m finally getting them addressed.

photo inside a GI exam room with tan exam table and white pillow against a blue and tan wall

I feel like I’ve already perfected the art of spending time in exam rooms.

Neuro

My migraines have been getting worse again. Unfortunately, our insurance doesn’t want to cover much of my Maxalt. They only want to cover three fills in sixty days. That’s 27-36 pills. When I have to take two to kill a migraine, that’s not enough. It means that, instead of being able to take these pills and move on with my day, I’m still having to try to treat my migraines with other things.

It just doesn’t work.

My neurologist has upped my nortriptyline to three pills at bedtime instead of two. I’m really hoping that it helps. For now, it’s helping me sleep through the night more. I’ll take that!

MCAS

I finally got a response from my allergist/immunologist office. The pee tests I did for MCAS were mostly within normal limits, though one showed higher mast cell activity than the others. Since I’m still having what we think are MCAS symptoms, though, they prescribed me montelukast or Singulair. What it does is block leukotriene D4 from hitting leukotriene receptors. This is especially helpful in the lungs, but also helpful throughout the body.

After a few nights of this, I’m already seeing benefits. The biggest one is that my rashes are not showing up! My face, chest, and arms have been normal looking for a few days. I’m absolutely floored and thrilled.

It does make me wonder if my rashes lately have been more due to MCAS than SJIA. Notably, I haven’t had much of my odd undiagnosed symptoms the last few days, either.

K's hand with three green and white capsules (nortriptyline), one pink pill (etodolac), one white capsule with black writing (Lyrica), and one pink square pill (Montelukast)

Birth control

I opted to get an IUD in order to get off my birth control pill. The extra estrogen could be increasing the frequency of my migraines.

That got put in on Tuesday. The process was incredibly painful and I almost passed out and/or threw up. I’m still kind of processing it but, to be honest, it was traumatic. The strings have, at least, stopped poking my insides.

GI

I also had a GI consult on Thursday. It was a really thorough visit and the NP I saw was incredibly understanding. I was migraining while there and she was very patient with me having a hard time with some words.

After talking more about my history and some of the things going on, she is concerned that I may have a type of IBD instead of IBS. Things like waking up at night to poop and rarely being hungry or only eating three bites of something to feel full are apparently not normal for something like IBS. In order to rule IBD – or another digestive issue – out, there are a few tests we have to run. Next week, I get to collect my poop and bring it to them for testing.

At the end of the month, I’ll have an endoscopy and colonoscopy. It may be able to give us answers or, at the very least, it can rule out something more serious.

Unfortunately, we noticed that my heart rate has been faster for… a while now. Combine that with my lightheadedness and nausea, and the NP is concerned about my heart… which means yet another appointment I’ll have to make.

Funny enough, it’s that issue that I’m focused on… mostly because heart stuff could easily point more towards MCAS or something else. If I’m honest, that’s scary. I’ve spent several days recently contemplating mortality because that’s what I do best. It’s not been great for my mental health.

So many appointments

This has been a collection of a ton of appointments and calls. It means that I’ll have a ton of follow-ups coming up, too.

I’m tired. It’s exhausting to have to stay on top of busy providers, try to get test results, and wait for calls back. People don’t always understand how tiring it is. It’s definitely worse than having a full-time job. Hell, it is a full-time job.

Thankfully, today’s appointment is for our car. It’s nice to be on the caregiver side of things sometimes, even if it’s for an inanimate object.

Hopefully, getting my things addressed will lead to positive results. I just want to feel better physically, mentally, and emotionally.

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Benepod Review

Posted on by Grayson

The makers of the Benepod sent mine to me for free in exchange for my feedback and honest review.

Spring is always a rough time for me. The constant barrage of storms brings intense joint pain, especially around my knees. Thankfully, this year, I have the Benepod.

the benepod box with instructions, usb cord, and adapter

You may remember Lady Gaga sharing how she alternates hot and cold quickly for her chronic pain. That’s what this product does, albeit on a smaller scale.

underside of benepod showing a light ring of red around the outside and large circle of blue on the inside

The underside of the device has a red ring that heads up as well as a blue circle that cools down when plugged in. This leads to Thermal Grill Stimulus – something that can’t fully be explained yet. While we don’t know why it works, it can help mask or ease someone’s pain.

One of the coolest parts of using the Benepod is that there is no medication to take or topicals to apply. We really don’t have to worry about side effects like with other pain treatments. I don’t have to resort to extra NSAIDs that upset my IBS or the few muscle relaxers I have that make me woozy.

To use it, you plug the device in. A green blinking light will go solid once the device is ready to use. It’s good for twenty minutes which doesn’t sound like a long time but somehow is. If you want more time, you simply unplug the device, plug it back in, and wait for your solid green light.

It is a little small, so moving it can get a little cumbersome for my crippy arthritis hands. Thankfully, Saringer is already working on things like a strap to hold the device in place to make it even more accessible.

This doesn’t completely get rid of my pain. To be honest, I don’t think there’s any one thing out there that would. What Benepod does, though, is take my pain from a seven or eight out of ten to somewhere between three and five. As much as I loathe those medieval pain scales, they’re at least good to show progress in pain reduction.

With how many storms we’re having lately, I’ve been heavily relying on the Benepod to help me get through the nights. There aren’t many things I feel the need to always have close by, but this is one of them for sure.

Do I have to be near an outlet?

No! The fact this uses a USB cord makes it super easy to use a portable charger to power the pod. The cord is so long, too, that I’m easily able to use it in bed while plugged into a USB hub.

Is this affordable?

Look, I’ve reviewed some things that cost several hundred dollars. I’m happy to say this only costs $99! You can snag it on Amazon, too, which means you could use gift cards and get it quickly.

Is it worth it?

Completely. There are nights that I struggle to sleep because my knee pain is so bad. When I make time to use the Benepod before bed, I actually get a few hours of restful sleep.

Rheumatology Leaders Urge Lawmakers to Address Rising Costs & Access Barriers in Arthritis Care

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This press release from the ACR just came out.

WASHINGTON, D.C. – Rheumatologists and rheumatology health professionals convened on Capitol Hill this week to urge legislative action on pressing policy issues affecting rheumatology care during the American College of Rheumatology’s Advocacy Leadership Conference, held May 16-17, 2018 in Washington, D.C.

Noting the rising costs and increasing access barriers in rheumatologic care, specialists encouraged lawmakers to support legislation that would create reasonable exceptions to the use of step therapy, grow the rheumatology workforce, increase transparency in drug pricing, and hold pharmacy benefit managers accountable for pricing practices that increase out-of-pocket costs for patients.

“We are at a critical juncture in rheumatology care,” said David Daikh, MD, PhD., President of the ACR. “According to the latest federal estimates, as many as 54 million Americans have a doctor-diagnosed rheumatic disease, and a recent academic study suggests that number could be as high as 91 million when taking into account symptoms reported by undiagnosed individuals. The rheumatology workforce is not growing fast enough to keep up with demand and too many of our patients struggle to access and afford the breakthrough therapies they need to manage their pain and avoid long-term disability. America’s rheumatologists are urging our lawmakers to act now and support bipartisan, common-sense legislation that would increase access to high-quality rheumatology care for their constituents.”

The American College of Rheumatology urged Congressional leaders to support the following legislation to address access and cost barriers in rheumatologic care:

  • Restoring the Patient’s Voice Act (H.R. 2077), bipartisan legislation which would create a clear and transparent process for patients with employer-sponsored insurance to seek exceptions to step therapy;
  • Know the Lowest Price Act of 2018 (S. 2553) and the Patient Right to Know Drug Prices Act (S. 2554), bipartisan legislation which would allow pharmacists to inform patients when the cash price of their medicines is lower than the price they would pay with insurance coverage;
  • Prescription Transparency Act of 2018 (H.R. 5343) bipartisan legislation that would allow pharmacists to inform patients about alternative options to lower out-of-pocket drug costs;
  • Ensuring Children’s Access to Subspecialty Care Act (H.R. 3767; S. 989), bipartisan legislation that would allow pediatric subspecialists to participate in the National Health Service Corps loan repayment program;
  • Conrad State 30 and Physician Access Act (H.R. 2141; S.898), bipartisan legislation which would allow international doctors trained in the U.S. to remain in the country if they practice in underserved areas; and
  • Standardizing Electronic Prior Authorization for Safe Prescribing Act of 2018 (H.R. 4841), bipartisan legislation which would require the Centers for Medicare and Medicaid Services to develop electronic prior authorization standards for Medicare Part D and Medicare Advantage plans.

Rheumatology leaders also advised members of the House and Senate Appropriations Subcommittees on Defense to establish a line item in the Congressionally Directed Medical Research Program (CDMRP) for arthritis at the Department of Defense using $20 million in existing funds. Such a program would meet the growing needs of active duty military personnel and veterans, a disproportionate number of whom live with osteoarthritis and other rheumatic diseases.

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Migraine Relief is a Beautiful Thing

Posted on by Grayson

Back in mid-April, I finally had a good appointment with my current neurology office!

After months of begging for migraine control, I went into this appointment prepared to issue an ultimatum. It felt clear that they didn’t care enough about my quality of life to give me medications that I need. I’ve been through the migraine treatment ringer in the past – this isn’t a new path for me. Telling me to get more sleep when I’ve been dealing with painsomnia since kindergarten.

When I walked in, I was fully prepared to give this schpeal I’d rehearsed in my head for two days.

Instead, the NP came in and asked how things were going. When I was done sharing my migraine frequency and details, she just went “Let’s get you some meds.”

It’s great to have a positive ‘the fuck?’ lately. Still, I’m really frustrated that it took so long for them to give me actual medication. My quality of life has sucked for a while around migraines. I try to push through, but I always pay for it. Why do I somehow have to prove it to providers by having to live in hell?

I’ve had rizatriptan for just under a month. She prescribed me 9 pills a pop and I’ve already picked up a third fill. In the last few days, I’ve had to take a few of these.

It’s absolutely life-changing.

I can’t frankly put into words how much I appreciate the ability to have more control over my health. To take away some of the unpredictability, it gives me back more confidence. I’m more able to participate in events and get shit done.

It’s incredible.

On top of that, those 9 pills are only five dollars. To think that $5 and jumping through hoops was keeping me from getting relief is bothersome at best.

Here’s to fewer migraines!

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Promethease Can Get You More From Your 23andMe Data

Posted on by Grayson

A while back, I took the 23andMe plunge. While there are always concerns about how data gets handled, I enjoyed the process. I still log in a few times a month to participate in research questions. Still, I wondered if I could get more out of the data they processed. Enter Promethease.

Using SNPedia, Promethease gives you the good, the bad, and the neutral data around your genetics. It’s fairly cheap at around $10 to start and they’re always having freebies – like, right now through May 10th, you can get your report for free.

Once I saw they were offering another freebie, I jumped at the chance to put in my 23andMe data.

It only took about 15 minutes for them to process the raw data from 23andMe. After going through the report, I feel like I have some potential directions for my neuroWTF. Where I really spent time was in the uncool section of my report – the bad.

What I found is that I’m at higher risk for diseases including RA (LOLOLOL), Alzheimer’s (up to 11% more likely), Crohn’s Disease, and Ankylosing Spondylitis. I learned that I have a slow metabolism, especially for steroids, hormones, and protein. I also have a lower response to inhaled steroids… AKA having to use my inhaler a few times to get relief makes a lot more sense.

One of the most interesting things was to learn that I’m likely a carrier for phenylketonuria – a condition that is fairly similar to some of the reactions I have to phenylalanine-containing products. I can’t do diet sodas, sugar-free anything, or even chew most gum.

What I really appreciated was linking these issues to studies around specific genetics. I am 4.6 times more likely to have Ankylosing Spondylitis, for example. The piece that shares this and which genetic component(s) were tested for it has links to the research providing the hypothesis around that figure.

In short, they give you likelihoods and the reading to dive into should you want to learn more. It’s a great tool for engaged patients. It doesn’t seem to matter where you got the data initially (23andMe, Ancestry, etc.) as long as you have the raw data or can grant Promethease access to it.

And, for those concerned about your data? You can download all the information and it’s wiped from their site after a little over a month.

The one negative is that the data is tedious to go through. I had nearly 400 items in the negative category, and a lot of those were repeats. I wish there was an easy way to fold everything up to see various conditions and your increased risk per published paper.

This was way faster than getting the tests actually done, and it’s really nice to have all this raw data. It’s absolutely a service anyone interested in digging more into their genetics should try out.

What do you think? Have you tried Promethease yet?

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Effectively Measuring Patient Engagement: An Investigation Into Patient Engagement And The Patient Activation Measure

Posted on by Grayson

For the month of April, I shared pieces I wrote in the process of obtaining my MS in Health Care Administration which I finished up this past fall. I wanted to wrap that up by sharing a teaser of my capstone which is available at my Academia site. Enjoy!

Abstract

This capstone project involves observing how patient activation/engagement and the Patient Activation Measure (PAM) are written about and evaluated. The research presented draws from peer-reviewed journal articles. The hypothesis of this work is that patient activation is beneficial as studied by trustworthy sources. This is true regardless of one’s place within healthcare and should be both implemented and studied more thoroughly. Findings suggest that, while the Patient Activation Measure is useful to measure activation, it is not a comprehensive tool. PAM is not optimized for a variety of marginalized identities including race and ethnicity. The findings of this capstone are useful for educational purposes. Additionally, this project can serve as the basis for additional research.
Keywords: Health Care Administration, Derrick Suehs, patient engagement, patient activation, and the patient activation measure.

Project Overview

The aim of this project is to conduct a case study on furthering patient engagement in health care by investigating current research and best practice information on patient engagement and activation. Also, this project will discuss the potential benefits and disadvantages of full patient engagement from the perspectives of patients, healthcare practitioners, and health systems. The paper will be organized to examine potential benefits of patient engagement for the patient first, then the provider, and finally the health system. This is a Health Care Concept Paper that will have relevance to nearly all stakeholders in health care, from patients to practitioners to insurance companies. Patient engagement is an important topic about which there is some controversy regarding responsibility and efficacy of implementation. This project will help to educate various stakeholders in healthcare regarding the terms utilized in the patient engagement realm, potential benefits of patient engagement, limitations of engagement, and findings of the latest research on the subject. While this aim is broad, the impact of this issue is broad as well. In the end, this project will be aimed primarily at patients, healthcare providers, and administrators within care systems.

The proposed hypothesis for this capstone is two parts: 1) that patient engagement is beneficial overall for stakeholders in healthcare, especially patients, providers, and health systems, and, 2) the patient activation measure is an effective tool for measuring engagement. By exploring the various research studies, the reader will develop a more complete understanding of patient engagement.

While most healthcare organizations experience difficulties in making changes while putting patient satisfaction programs in place, the benefits outweigh the negatives. From an economic standpoint, the pay-for-performance principle instituted by the Patient Protection and Affordable Care Act (PPACA) is a significant vehicle for moving healthcare toward a purposeful focus on clinical quality outcomes and patient experience.

Cost is expected to increase in the short-term while healthcare organizations implement interventions to improve the patient experience. In the long-term, these costs should decrease as patient engagement becomes the norm. Organizations are working to set up systems to measure the efficacy of these efforts.
There remain challenges in improving the results of interventions. Differences in experiences for racial and ethnic groups are still reported (Welnick, et al., 2011). These differences also occur with education status, socioeconomic status, gender identity, sexual orientation, age, and other factors (Millenson, 2016).

Context

The Patient Protection and Affordable Care Act

In March of 2010, the PPACA was signed into law (Healthcare.gov, 2010). Two of the biggest assets for consumers were the requirements for insurance plans to cover people with “pre-existing health conditions, including pregnancy, without charging more” and making it “illegal for health insurance companies to cancel your health insurance just because you get sick” (Healthcare.gov, n.d.). Additional benefits included giving younger adults the ability to stay on their parents’ insurance plans up to age 26, education about the coverage a patient is receiving, and regulations placed on insurance companies surrounding increasing premium rates (Healthcare.gov, n.d.).

One of the strategies of the PPACA is the “shifting from a reimbursement system based on the volume of services provided to one based on the value of care” (Abrams, et al., 2015). The shift to pay-for-performance has been an effective way to put an intense focus on improving quality in all elements of healthcare. Sending a “clear signal to providers that they will need to adapt quickly to incentives that reward appropriate, high-quality care and good patient outcomes” has begun to spark improvements (Abrams, et al., 2015). Since December 2015, Medicare has been planning to assess penalties to “758 hospitals that had high rates of patient safety incidents” (Prina, 2016, p. 375).

On a national level, the PPACA produced more patient-focused outcome measurements and surveys aimed at providing more opportunities for patients to be engaged in healthcare. Additionally, it contributed to the creation of PCORI – the Patient-Centered Outcomes Research Institute (Willis Towers Watson, 2012). PCORI aims to not only bring the voice of the patient into research projects but to ensure research is accessible to everyone (PCORI, 2014). To accomplish this, PCORI provides funding for patient-centered research, takes suggestions for research topics from patients, and includes patients on all advisory boards.

Patient Activation and Engagement

The populations most affected by issues of patient
engagement are providers and patients. Patients of all kinds, but especially those with multiple health concerns or complex conditions, can be influenced by paternalism which subordinates a patient’s free will and informed consent to what a provider might choose. Dangers associated with the practice of paternalism include overlooking the costs associated with treatments, treatments that will not work for a patient’s lifestyle, and treatments that are more likely to cause contraindications and side effects. These consequences lead to a lack of adherence or compliance in care, be it not taking medications as prescribed or skipping lab work and followup appointments.

The historical tradition of paternalism in medicine makes it difficult for patients and providers. Health care practitioners and administrators who support the continued development of patient engagement strategies recognize that there are a vast number of roadblocks, from funding to time in the clinic to including patients on various committees. However, many researchers still believe that improving patient engagement can be accomplished (Hibbard & Greene, 2013).

Definition of Terms Used

The following definitions are provided to create an understanding of the key words utilized throughout the project.

Adherence/Compliance: Adherence and compliance are the same in the patient-centered medical world. They represent “the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider” (World Health Organization, 2003, p. 18).

Informed Consent: Informed consent depends on how competent the patient is from a cognitive standpoint to make a “voluntary choice” regarding treatment and care based on information provided to them (Appelbaum, 2007, p. 1834). This also means that patients must be provided with a substantial amount of information to make their choice, which is known as the Reasonable Patient Standard, rather than going by provider preference or coercion (De Bord, 2014).

Paternalism: Paternalism is defined as the “power and authority one person or institution exercises over another in order to confer benefits on, or prevent harm to, that person, regardless of the person’s informed consent” (Habiba, 2000). In layman’s terms, paternalism exists when a physician or other health care practitioner (nurse, medical assistant, physical therapist, and others) decides upon a course of action without any real input from the patient.

Patient Activation/Engagement: Patient Activation or Engagement describes the extent to which a patient has “the knowledge, skills, and confidence” to manage and take part in their health care (Hibbard & Gilburt, 2014, p. 3). PAM gives a number on a scale of 0-100 with higher scores representing higher levels of activation (Hibbard & Gilburt, 2014, p. 8). When a patient is more activated, their overall health tends to be better. It can play a role in “tackling health inequalities” as well (Hibbard & Gilburt, 2014, p. 4). Throughout this project, patient activation and patient engagement will be utilized interchangeably.

Patient Activation Measure: The Patient Activation Measure (PAM) is a “series of 13 statements designed to assess the extent of a patient’s activation” that the patient completes on their own (Hibbard & Gilburt, 2014, p. 8).

Shared-Decision Making: Shared-Decision Making (SDM) is a process where healthcare providers and patients work together to reach the best conclusions regarding treatments and next courses of action (Elwyn, et al., 2012, p. 1361). Both parties must share information completely and freely to fully participate in the SDM process. SDM can range from a system where patients have slightly more control to those of truly shared decisions.

Strategy, Approaches, and Challenges of This Project

The research method utilized for this capstone is the case study. First, a search throughout peer-reviewed academic journals and other reliable sources was carried out using key terms. This approach allowed for specific research into how patient engagement has been studied. The focus was more retrospective research than prospective research. While some portions of this project will be exploratory for future research, it will mostly be focused on program effects. Heavy reliance on research via the internet and in resources available via libraries will be necessary.

While case study is the ideal method for researching this project due to the time given, it has presented limitations on what could be compiled and analyzed. The planned research was based on prior studies and findings of others in the field. Some research studies were limited in scope, especially since much of the current research recognizing the importance of the subject had been conducted by one major research group – Judith Hibbard and Jessica Greene. This may limit the information available for this case study.

Case studies can be difficult to evaluate. However, this capstone focused on a scholarly work accepted by academic standards. The theories and practices discussed in this capstone identified effective ways patient engagement can influence the industry at large. Bringing new ideas and perspectives to the discussions around engagement would be valuable. Additionally, lessons learned and ideas for future research are included.

Pick Up Women’s Health This Month!

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If you take a look at the latest copy of Women’s Health magazine, you’ll see a familiar face around page 156.

two photo collage on a black background; 1-cover of the May 2018 issue of Women's Health with Anna Farris; 2-photo of Kirsten leaning on Theron’s shoulder in the magazine

T and I are in the magazine talking about how we make love work with depression and other mental illness. Our blurb is small, but it means so much to me.

Sometimes we forget the impact we have on others just by sharing our own stories. This was a much-needed reminder to keep telling my truth.

I picked up a couple extra copies, so let me know if you want one and I’ll be happy to send it out.

MisdiagKNOWsis Chat May 3rd at 3 pm ET

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Did you know the average patient with an autoimmune condition waits for FIVE YEARS for an accurate diagnosis? There are people who wait far longer, too – that’s just an average.

My pals at Clara Health and Enzyvant are hosting a Twitter chat to talk about misdiagnosis. You may remember them from the Farber Disease post.

Want to talk about misdiagnosis? You can preview the chat questions here. Make sure to join on Twitter using the tag #MisdiagKNOWsis at 3 pm ET on May 3rd.