New Year, Same Blur

I’ve felt pretty uninspired in the last couple of months. I know I’m not alone. I have bursts of focus, but they seem to require all my energy.

During the first week in December, I noticed that a blood vessel had ruptured in my right eye at the location of the stitches from my Retisert. It came suddenly and went away just as fast. It turned out to be nothing… but it threw me for a loop. I’m usually fairly decent at compartmentalizing my eye issues, but it took me a while to drag myself up from the low this time and I know it’s because of everything else going on. 

The mental weight of having a chronic illness can be heavy under “normal” circumstances, but in a pandemic, it sometimes feels almost crushing. My older son’s school district is planning to implement hybrid learning for kindergarten next month (they’ve been virtual thus far). COVID-19 cases are the highest they’ve ever been (even without the new variant) and the bar for “acceptable” case numbers per 100,000 people, per County seems to be a moving target. If we don’t hit the goal, we change it. At this point, I’m not willing to risk my vision so that he can spend half his day in a mask. I can’t help but feel guilty. Kids need to socialize right? What is worse – having no social life temporarily or potentially having a blind parent? I don’t want to put myself in the position where I have to go off of the medicine that is preserving my vision to potentially save my life.

If you’re like me and on immunosuppressants for uveitis, you’re a bit down the priority list in terms of the COVID-19 vaccine. 

The CDC website states the following, under People with Certain Medical Conditions: “COVID-19 is a new disease. Currently there are limited data and information about the impact of many underlying medical conditions on the risk for severe illness from COVID-19. Based on what we know at this time, adults of any age with the following conditions might be at an increased risk for severe illness from the virus that causes COVID-19:

  • Immunocompromised state (weakened immune system) from blood, bone marrow, or organ transplant; HIV; use of corticosteroids; or use of other immune weakening medicines.”

Might be,” as in, somewhere down the list from those with conditions that “are” at an increased risk. Among those conditions is smoking, which is a hard pill for me to swallow (and I take a lot of pills) since that’s a choice, and uveitis is Not a choice. 

I know the line has to be drawn somewhere. In Washington, that line seems to be at least Phase 2 for me (currently listed under “future phases” on the vaccination timeline). 

So, I wait. We wait. 

Just know that if you are feeling the loneliness of isolation, the frustration of being the one for whom everyone else needs to be physically isolated, you’re not alone (or at least, we are alone, together).

In additions to sites posted on my Stories and Support page, here are a couple of other resources:

I am happy to report that after a year of medication trial and error, my eyes were quiet at my appointment this month. “Finally!” in the words of my doctor, as we both took a breath before she injected my final Avastin shot (hopefully) of the series. (See blog post: “The latest on my uveitis“)

I moved some things around on the website and created the “Complications” page, under Treatments, which includes side effects stemming from uveitis and treatments of uveitis. I hope it’s helpful.

With the official “year of vision” behind us, I’ll continue attempting to manage the stress of life right now in a productive manner, processing information and emotions from the past year. If only my hindsight was 2020! 

Prednisone: The Good, The Bad, & the Ugly (Part II)

It’s a new season in this crazy pandemic year. With fires blazing, school in session, and elections and holidays on the horizon, life is not easy right now, and on medication, it can be even more challenging to navigate. With that said, the following is Part II of information on Prednisone that I think is useful. Drop me a line if you think I missed something important! 

Interactions

In Part I,  I discussed interactions with prednisone by way of calcium and potassium absorption (i.e. it inhibits absorption, so supplements are recommended), and also the interactions between insulin and sugar (i.e. limit sugar on prednisone, this includes alcohol). Other interactions include some anti-infectives, anti-diabetic agents, and non-steroid anti-inflammatory drugs (NSAIDs). If you are taking other medications along with prednisone, talk to your doctor, and check interactions on drugs.com or another trusted website (https://www.drugs.com/tips/prednisone-patient-tips).

Tapering and Withdrawal

I’ve tapered down in dosage many times and gone completely off of prednisone a couple of times. The importance of tapering cannot be overstated. In Part I, I talked about Adrenocortical Insufficiency. When on prednisone for more than three weeks, the body becomes reliant on it for cortisol and stops making its own (How do you to taper off prednisone?). So, it’s important to wean your body off the supplemented steroid so it does not crash and leave you with a whole host of painful (and potentially dangerous) withdrawal symptoms. Even with tapering, you may have withdrawal symptoms; the longer you’ve been on prednisone, the more likely it is that you will have them.

Withdrawal Symptoms may include: 

  • Severe fatigue
  • Joint pain
  • Fever
  • Stiff or tender muscles
  • Body aches
  • Lightheaded feeling
  • No appetite
  • Labored breathing
  • Vomiting
  • Weight loss
  • Headaches
  • Adrenal crisis, a rare, possibly fatal reaction to a lack of steroid hormone in your body
  • Depression
  • Anxiety

For me, fatigue, or just being able to sleep better, is always the first and most common symptom of tapering off of higher doses, All of the bad side effects slowly start to fade away. However, when I have gone to taper off of prednisone, from only 10 mg, even when I thought I was tapering slowly, I have had excruciating joint pain. I was convinced that I had arthritis or another autoimmune condition had been revealed last time I tapered. I would wake up and barely be able to move my fingers! My knees and back just ached. I felt like I was 80 years old! I thought I was insane; I was only coming off of 10 mg! Then I read the following statement, from Adrenal Insufficiency United’s “Glucocorticoid tapering and adrenal suppression testing guide,” which was such a relief to me: 

“[Withdrawl] Symptoms are milder at high cortisol amounts and intensify when milligrams are reduced below a certain point. A longer adjustment period is recommended at lower doses.” 

The guide linked above includes tapering recommendations. There are others available online, such as these on RheumInfo.com. I recommend reviewing some and thinking about what might work for you; different methodologies exist (stair steps, alternating dosage days, etc) and it might take trial and error to discover to which your body responds best. Take examples to your doctor before you start your taper or if you are experiencing painful withdrawal symptoms. Tapering can take weeks or months, depending on your dosage and the duration of treatment. 

Pregnancy and Breastfeeding

I’ve made it no secret that I took a low dosage (~10 mg if I recall correctly) during my two pregnancies and while breastfeeding, and my sons incurred no known side effects. I’m not advocating one way or another, this is just my experience and it coincides with the latest information out there, which is that taking prednisone during pregnancy does not significantly increase the background chance of having a baby born with a birth defect (Mother To Baby, 2018, linked below).  I did make the choice to not donate breast milk to anyone because of my medication. I discuss my pregnancy experience in my blog post: Women and Uveitis: my pregnancy journey and I’ll link the articles I cite in the post regarding prednisone here:

Mother to Baby: Medications and More During Pregnancy – Prednisone / Prednisolone Fact Sheet. References for the Fact Sheet can be found at the link at the bottom of the article: https://mothertobaby.org/fact-sheet-reference/prednisone-prednisolone-ref/

Bandoli, G., Palmsten, K., Forbess Smith, C. J., & Chambers, C. D. (2017). A Review of Systemic Corticosteroid Use in Pregnancy and the Risk of Select Pregnancy and Birth Outcomes. Rheumatic diseases clinics of North America, 43(3), 489–502. https://doi.org/10.1016/j.rdc.2017.04.013

I also recommend reviewing Prednisone on “LACTMED” the Drugs and Lactation Database. This page includes information like drug levels detected after certain amounts of time which can be useful in trying to time feedings or pumpings to have the least amount of drug present possible.

COVID-19

Although COVID-19 is a new pandemic, there has already been work done compiling information regarding the impacts for patients on corticosteroid treatment, as well as recommendations for further treatment. I have a handful of links and papers on the home page of this website. Taking immunosuppressants during a pandemic is something to consider carefully. 

A collection of COVID-19 cases among 600 patients with rheumatic diseases found that “glucocorticoid use at a prednisone-equivalent dose ≥10mg/day was associated with an increased odds of hospitalisation, which is in agreement with prior studies showing an increased risk of infection with higher dose of glucocorticoids. The study also demonstrated “that most individuals with rheumatological diseases or on immunosuppressive therapies recover from COVID-19, which should provide some reassurance to patients” (Gianfrancesco M, Hyrich KL, Al-Adely S, 2020).

In another paper, 139 uveitis experts from around the globe were given statements and answered questions about treatment options for Non-Infectious Uveitis (NIU) patients and Immunomodulatory Treatment (IMT). [IMT is the treatment of disease by activating or suppressing the immune system. In the case of treating uveitis, the medications are reducing or suppressing the immune system.] Statements were developed around when to initiate, continue, decrease and stop systemic and local corticosteroids, conventional immunosuppressive agents, and biologics in patients with NIU in increased risk, high risk, and very high-risk categories. 

This paper contains helpful tables and flow charts on recommendations based on your risk category and specific treatment types.

Summarized results related to corticosteroids:

  • Surveyed uveitis experts recommended to not begin systemic corticosteroid or immunosuppression for NIU treatment in sick patients with suspected or confirmed COVID-19, irrespective of risk group. 
  • Among sick patients receiving high-dose corticosteroid, consensus was to taper the dose in all risk groups and to taper even low-dose corticosteroid in high-risk patients or very high-risk patients. Tapering instead of abrupt cessation of the oral corticosteroids was recommended in view of the risk of adrenal insufficiency. This paper is full of useful tables and flow charts to follow based on which risk level you’re at.
  • In healthy patients, experts agreed to start oral corticosteroids only in increased risk patients and not in high-risk or very high-risk patients. 
  • Low-dose oral corticosteroids and conventional IMT should be maintained, while only in increased risk or high-risk patients, higher-dose corticosteroids should not be tapered and stopped.
  • In healthy patients with a contact history, the overall agreement is lower. Low oral dose corticosteroids and conventional IMT should be maintained in increased risk patients.
  • Although first-line treatment for NIU consists of local or systemic corticosteroids, overall consensus emerged that in the setting of the COVID-19 pandemic, the use of systemic corticosteroids should be avoided in sick patients and local therapy (regional corticosteroid injections) should be preferred to systemic treatment in all patients, irrespective of their risk and health, except in healthy patients not already on corticosteroids. Systemic corticosteroids might be harmful, given their mechanism of action that inhibits the immune responses and affects the pathogen clearance. 

COVID-19 Related Works Cited

Agrawal R, Testi I, Lee CS, et al. Evolving consensus for immunomodulatory therapy in non-infectious uveitis during the COVID-19 pandemic. British Journal of Ophthalmology Published Online First: 25 June 2020. doi: 10.1136/bjophthalmol-2020-316776

Gianfrancesco M, Hyrich KL, Al-Adely S On behalf of the COVID-19 Global Rheumatology Alliance, et al. Characteristics associated with hospitalisation for COVID-19 in people with rheumatic disease: data from the COVID-19 Global Rheumatology Alliance physician-reported registry. Annals of the Rheumatic Diseases 2020;79:859-866.


Further Reading: There are more links related to prednisone on the Corticosteroids section of my Treatments page.

Immunosuppressed in the Pacific Northwest

I had another topic planned for my post, but it seemed strange not to talk about the virus that currently has our lives held hostage here in Washington State and all over the world. Since many uveitis patients are on treatments that work by suppressing the immune system, diligence when it comes to health and not getting sick is never far from our minds. However, now with the Coronavirus (COVID-19) pandemic, the immunocompromised are a living buzzword, seemingly surviving at the mercy of others.

When the immune system is suppressed or compromised, it makes the body more susceptible to infection and/or more susceptible to a more severe or long-lasting reaction to an infection (If You’re Immunocompromised, You Are at a Higher Risk of Coronavirus—Here’s What That Means).

This is what I’m doing to protect myself and my family.

Avoidance – Social Distancing

I go through my day and see what I can and am willing to change to better protect myself. Some folks are completely self-isolating/quarantining, but I don’t feel the need to do this per se. I have continued to shop, albeit choosing local, smaller shops (who desperately need support right now!) for the most part. Take advantage of curbside and in-store pickups where physical interactions can be limited. Starting March 17th, this will be the only option for restaurants in Washington State.

Even simple changes in your routine can make a difference. For example, at my place of employment, probably a quarter of the employees are female. So, I have decided to not to use any unisex restrooms to cut down on my chances of contracting the virus in the bathroom.

Social events and travel plans have been canceled or postponed for us. We are mostly staying around the house, going on walks and bike rides to get fresh air.

And of course, washing my hands and my sons’ hands for 20-30 seconds every time we return home, use the bathroom, etc. Daycare is still on for them at this time, so we scrub, scrub, scrub!

Treatment Plan – Medications

Recently, my uveitis has become active once again and I started CellCept (mycophenalate) and a pulse of prednisone, both of which suppress my immune system. The timing.. not so great. My husband and I have driven into Seattle every two weeks for the past month and a half to attempt to get my uveitis back under control. Last Friday, my doctor injected an Ozurdex (intravitreal steroid implant blog post here) so that I can start to taper down the prednisone while the CellCept ramps up (hopefully) to full efficacy. Talk to your doctor about changes you can make in your treatment, if any, to lower the dose of systemic medications.

It’s also a good idea to get a bit of a stockpile of medication in case of shortages or the need for isolation. Talk to your insurance company. I’ve found that my insurance will cover a 90-day supply online (https://www.express-scripts.com/), whereas only a 30-day supply at my local pharmacy is covered.

Have a conversation with your doctor about a plan for if you are exposed to or contract the coronavirus. This is important. Despite best efforts, many of us will contract this virus; there is no shame or blame to be had. Contact your doctor right away if you are experiencing symptoms.

Diet and Supplements

One of the most important factors in your body’s ability to respond is what you feed it. Now is a great time to work on adding in more of the “good stuff.”

Boost the body’s natural detoxification systems with:

Cruciferous vegetables – at least 1 cup daily – including broccoli, kale, collards, Brussels sprouts, and cauliflower

Garlic cloves – 2 to 3 every day (or take a garlic supplement)

Organic green tea in the morning instead of coffee

Fresh vegetable juices – including celery, cilantro, parsley, and ginger

Prepared herbal detoxification teas containing a mixture of burdock root, dandelion root, ginger root, licorice root, sarsaparilla root, cardamom seed, cinnamon bark, and other herbs

High-quality, sulfur-containing proteins including eggs, grass-fed whey protein, garlic, and onions

Bioflavonoids which are found in berries and citrus fruits

Celery to increase urine flow and aid in detoxification

Cilantro 

Rosemary, which contains carnosol, a potent booster of detoxification enzymes

Curcuminoids (turmeric and curry) for their antioxidant and anti-inflammatory action

Burdock root 

Chlorophyll found in dark-green leafy vegetables and in wheatgrass

Avoid simple sugars. Sugar and refined grains that turn into sugar can suppress your immune system. Stick to real, whole, fresh foods. Limit refined sugar and flour. 

Supplement with Vitamin C. 

“Mark’s Picks,” Mark Hyman, MD. March 13, 2020

Other immune system boosting supplements are Vitamin D and Elderberry. Always talk to your doctor and check interactions with medications and other supplements before starting something new. See the Healthy Vision page for more diet information.

Sleep

Telling someone to get adequate sleep while on prednisone during a pandemic is a bit like telling them to “sleep when the baby sleeps” (and do laundry when the baby does laundry ;)). Sort of an oxymoron from my perspective. None the less, the body repairs itself while sleeping and deep sleep is vital to the immune system. Force yourself to stop scrolling through your feed of out-of-your-control news (ideally 30-60 minutes before lights out) and get to bed.

Personally, while on any dose higher than 10mg of prednisone, I take melatonin an hour before bed every other night (let’s be honest, every night lately). There have even been studies that melatonin may be beneficial in reducing inflammation associated with uveitis, so if it works for you, that’s a win, win! Melatonin as a Therapeutic Resource for Inflammatory Visual Diseases (2017); Treatment with melatonin after onset of experimental uveitis attenuates ocular inflammation (2014); Melatonin May Save Eyesight In Inflammatory Disease, Study Suggests (2008).

Lifestyle

Continue to move your body and get exercise! If I am feeling a bit under the weather, I make sure to take it easy and walk or do at home yoga instead of more intense weights at the gym when I’m on immunosuppressants (my gym avoidance will start this week). Sweat out toxins in a hot bath. Use a diffuser or apply essential oils to calm and support the immune system (4 Aromatherapy Recipes to Boost Your Immune System). Use extra time at home to work on or start a hobby. Or just sit and relax. I’m choosing lighthearted reading and media for pleasure when the news is so heavy.

Being informed, but limiting news and social media exposure is usually what I aim for, but especially now when a simple click can lead down a path I may be emotionally unprepared for at any given time. There are plenty of articles about How To Calm Your Anxiety About The Coronavirus.

Stay safe and stay connected even when not possible physically. It takes a village to save the village; encourage those you love to be socially responsible. Do what you can do, and that is all you can do.

Update: 3/17/2020 – As the number of confirmed cases in my area continue to increase, I am now working from home and my sons are at home as well. Things are changing fast and it’s been an emotional week (and it’s only Tuesday!). Thankful for the ability to work from home.

Related links:

UW Medicine COVID-19 Patient Question and Answer Page

How to prevent feeling totally isolated in the time of social distancing