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

August 17, 2020.Reading time 14 minutes.

Prednisone was synthesized in the mid-1950s by Arthur Nobile and has since been a miracle and a misery for people with autoimmune and inflammatory disease.

When I first started taking prednisone in 2011, I had no idea what I was in for and it showed. I gained about 10 pounds pretty quickly, “moon face” and all. When my brother came to visit he told me he barely recognized me. I had terrible acne that covered my chest and neck. My knees ached so badly I couldn’t stay in bed, and since I couldn’t sleep anyway, I was up early and late. I was completely miserable.

I was on 40-60 milligrams (mg) at the time, which is a lot. A dose above 40 mg is considered a “high dose,” while anything below 7.5 mg is considered a “low dose” and to be “steroid sparing” (most patients don’t experience the side effects known to be associated with prednisone at this level) (https://www.aocd.org/page/SteroidsOral).

The prednisone did its job; my uveitis was brought to a screeching halt. But I couldn’t stay on the high dosage forever (thankfully) due to all of the side effects. I transitioned to combinations of prednisone and methotrexate and cyclosporine, eventually turning to RETISERT (see Treatments page).

I’ve been on and off prednisone since then, more time on than off, but at a much lower dosage. Typically I’ve been on 5-10 mg with pulses when I have a flare. And, I can honestly say, it’s often the only thing that keeps my uveitis at bay. That’s why prednisone is prescribed so regularly for a myriad of different conditions; it works and it works fast. Although the side effects of prednisone at high doses are likely unavoidable, I now am aware of them, long and short term, and what I can do to lessen them.

Let’s start at the beginning.

What is prednisone and what does it do?

Prednisone is a synthetic glucosteroid. It is a type of corticosteroid that is closely related to and mimics cortisol, which is a hormone naturally produced by the adrenal gland in the body.

When the body becomes stressed, the pituitary gland at the base of the brain releases ACTH (adrenocorticotropic hormone), which stimulates the adrenal glands to produce cortisol.

The extra cortisol allows the body to cope with stressful situations, such as infection, trauma, surgery, or emotional problems. When the stressful situation ends, adrenal hormone production returns to normal.

The adrenal glands usually produce about 20 mg of cortisol per day, mostly in the morning, but they can produce five times that much when needed in a stressful (or perceived to be stressful) situation. Prednisone, the most commonly prescribed synthetic corticosteroid, is four to five times as potent as cortisol. Therefore, roughly 5 mg of prednisone is equivalent to the body’s daily output of cortisol. There are other synthetic corticosteroids available which differ in potency and half-life (Eustice, 2020).

During a stressful scenario your body is in “fight or flight” mode and thinks of little other than dealing with the stressor. Therefore, when you have increased corticosteroids in the body, your body blocks substances that create inflammatory actions called prostaglandins (which initiate healing and deal with allergic reactions) and white blood cells (which destroy foreign cells and allow the immune system to function properly). In this way, corticosteroids suppress the immune system.

Cortisol also helps to control the salt and water balance in the body as well as regulates carbohydrate, fat, and protein metabolism. When you have a heightened amount of corticosteroid in your body, this system too is thrown out of whack. And thus, we have side effects.

Side Effects of prednisone

There are known side effects of prednisone, particularly with prolonged use, for virtually every system in the body. I’ve summarized some of the more common side effects below. Check out Drugs.com for a more complete list and more details.

When reading through some of these, it’s clear that many are connected and all are impacted by daily actions such as diet, exercise, stress response and sleep.

Adrenocortical Insufficiency

When given in a stronger dose than the amount the body can produce on its own, for prolonged periods, glucocorticoids may cause decreased secretion of endogenous (self-made) corticosteroids by suppressing pituitary release of corticotropin (secondary adrenocortical insufficiency). Basically, since you’re taking prednisone, the body senses the level of steroid is “high enough” and stops making as much. This is why it is dangerous to stop taking prednisone cold turkey (I’ll post about tapering off prednisone next month). The degree and duration of adrenocortical insufficiency is highly variable among patients and depends on the dose, frequency and time of administration, and duration of therapy. Talk to your doctor about adrenal supplements and lifestyle changes if you are feeling sluggish and tired all of the time (especially on high doses of prednisone).

Immunosuppression and Increased Susceptibility to Infection

Increased susceptibility to infections is common on prednisone. It’s easier to get sick when the immune system is suppressed. This can mean anything from serious and potentially fatal infections like chicken pox and measles to persistent athlete’s foot and candida. Read Study Warns about higher infection Risk.

Remember that administration of live virus vaccines, including smallpox, is contraindicated (advised against) in patients receiving an immunosuppressive dosage of glucocorticoids. Glucocorticoids, especially in large doses, increase susceptibility to and mask symptoms of infection.

Infections with any pathogen, including viral, bacterial,or fungal infections in any organ system, may be associated with glucocorticoids. There are a variety of ways to get rid of or lessen the severity of infections such as fungal infections, both with and without medication. In my experience, diligence is paramount if you are going to be on prednisone for a while.

Musculoskeletal Effects

Muscle wasting, muscle pain or weakness, and atrophy of the protein matrix of the bone resulting in osteoporosis or osteopenia can all be side effects of prednisone. Osteoporosis and related fractures are one of the most serious adverse effects of long-term glucocorticoid therapy. The American College of Rheumatology (ACR) currently considers patients receiving or planning to receive greater than 2.5 mg of prednisone daily for three months or longer to be at risk for bone loss (Glucocorticoid-Induced Osteoporosis).

A high protein diet may help to prevent adverse effects associated with protein catabolism. Calcium and vitamin D supplementation and weight-bearing exercise that maintains muscle mass are suitable first-line therapies aimed at reducing the risk of adverse bone effects.

I had a Dexascan in 2018 which showed slight osteopenia in my hips. It surprised me because I’ve always been pretty active and wasn’t on a high dose of prednisone at the time (I was nursing my second son at the time which may have contributed). I’ve since increased my calcium and vitamin D and my weight lifting. My insurance covers another scan this December, so we will see if it worked!

I also remember when I was on 60 mg, the pain in my lower back and knees was so bad I would wake up at night and not be able to sleep.

Ocular Effects

As many of us with uveitis know, the treatments often involve the side effect of cataracts and increased intraocular pressure. Prolonged use of prednisone may result in posterior subcapsular and nuclear cataracts and/or increased intraocular pressure (IOP) which may result in glaucoma or may damage the optic nerve if left unchecked.

Nervous System Effects

Side effects of prednisone include insomnia, mood swings, and depression. I tend more toward the “intense” side of personalities at times (hey, I’m a Scoprio.. what can I say?!) and when I’m on higher doses of prednisone I have to consciously remind myself to tone it down a little. Especially when I haven’t slept much due to high doses; I usually notice trouble sleeping when I’m on 20 mg or more. Another side effect I’ve noticed, but don’t generally read in the literature is feeling warm all of the time, which can also impact mood and sleeping. Altering your sleep schedule (can you fit in a nap?) based on when you sleep best can help as well as just giving yourself down time and plenty of grace… and space.. from other people (sort of kidding).

Endocrine and Metabolic Effects

Prednisone may decrease glucose tolerance, produce hyperglycemia (high levels of sugar in the blood), and aggravate or precipitate diabetes mellitus, especially in predisposed patients. If glucocorticoid therapy is required in patients with diabetes mellitus, it may be necessary to change insulin or oral antidiabetic agent dosage or diet. Read What is the link between prednisone and diabetes?

The increased requirement for insulin, accompanied by potassium loss, sodium (and fluid) retention and increased appetite often lead to weight gain when uncontrolled. Monitoring carbohydrate and refined sugar, and sodium intake can help with these side effects. See the Prednisone Friendly Diet from Stop Sarcoidosis and Prednisone Weight Gain by Dr. Megan, Prednisone Pharmacist, who has really great info on her site.

Patients with hypothyroidism may have an exaggerated response to glucocorticoids. Glucocorticoids can lower serum TSH levels and decrease TSH secretion through direct effects on TRH in the hypothalamus. Chronic use of high dose glucocorticoids do not appear to cause clinically significant central hypothyroidism (Haugen, 2009).

Sodium retention with resultant swelling, potassium loss, and elevation of blood pressure may occur, but is less common with prednisone. Along with swelling is the less-than-fun phenomenon known as “moon face.” Read Embrace Moon Face and supplement potassium.

Dermatologic Effects

I’ve always struggled with acne, but let me tell you that prednisone acne is real. When I was on 60 mg, I literally bought turtle necks and wore them all the time because my neck and chest were so broken out (luckily it was winter). Prednisone impairs wound healing (remember, it’s telling your immune system to chill out) which can make acne last longer.

Prednisone also thins out the skin which can cause you to bruise more easily (Bruising for No Reason? It Could Be Due to These Medications).

So there you have the (abbreviated) long list of side effects of the miracle drug that is prednisone.

Next month I’ll talk about interactions, tapering and withdrawal, touch on pregnancy on prednisone, and COVID-19 risks on prednisone.

Q & A with Lorelei

April 25, 2020.Reading time 7 minutes.

This week, instead of a topic from my perspective, I thought it might be interesting to read about someone else’s experience. Lorelei has anterior uveitis, associated with Juvenile Idiopathic Arthritis (JIA). I’ll link some sites about JIA at the end.

I met Lorelei’s dad through work before she was born. I remember how scary it was when Lorelei was diagnosed and I couldn’t believe that she also had such a “rare” disease. 10 years later we even see the same doctor. Meeting her, you would never guess she battles an autoimmune disease; it definitely isn’t stopping her!

Lorelei Burnett, 13

About you:

Hobbies: Playing Soccer

Last book you read: Unpregnant

3 things you can’t live without during #stayathome: As much as I hate to say it my phone, a soccer ball and my dogs

About your uveitis:

What type of uveitis do you have / what is your diagnosis? Is your uveitis associated with another condition or disease?

I have Juvenile Idiopathic Arthritis (JIA) which caused my uveitis.

How did you know something was wrong? When were you diagnosed and how long did it take?

When I was first diagnosed I was three years old and my parents had noticed that my eye was red and inflamed. They took me to the doctor for what they thought was pink eye, but when the antibiotics for pink eye didn’t work and the different allergy medications they tried didn’t work, they finally decided on sending me to a child ophthalmologist who was the one who diagnosed it.

How are you currently treating your uveitis? What other treatments and/or procedures have you tried?

When I was first diagnosed I had two surgeries one to remove the lens in my left eye which had a cataract on it. ( At that time I was also one a lot of different steroids which with uveitis can sometimes cause cataracts.) And then another surgery to remove scar tissue from the first surgery. Currently I take Humira which is an immunosuppressant which keeps me from having flare-ups. It’s a bi-weekly injection that I can give myself at home. I also take methotrexate which is a chemotherapy drug which stops me from having reactions to some of the other medications. In the past I was on remicade which you have to take intravenously so it was really hard to go to the hospital and miss so much school.

Do you have flares? What are they like?

When I’ve had flares in the past for me I’ve never really been able to tell when they were happening, my JIA, except for when I was really young, has only affected my eyes so for me there is really no tell-tale sign that I’m having a flare-up. They’ve happened in the past when they’ve been trying to wean me off my medication.

What is the hardest part of having uveitis for you?

Honestly I’ve been really lucky it really doesn’t affect my daily life. I guess one of the hardest things in the past was having to go to the hospital sometimes having three weeks to get my IV’s. It was hard because I missed a lot of school between IVs and opthamologist and rheumatologist appointments. But since I’ve switched to at home injections it’s been so much nicer. One thing that’s always been super hard is taking the methotrexate when I was younger it was always a battle between my parents and I to get me to take it. It’s really hard on your body and I would end up throwing up most of the times I took it even though I was at such a low dose.

How has having uveitis changed your life?

Aside from doctors appointments and medication it really hasn’t. I can still play sports and do everything someone without uveitis would.

Do you research uveitis (causes, treatments, etc) or get all your info from your doctor?

I’ve researched a lot about it in the past, I actually did a whole presentation on uveitis and JIA for one of my classes this year.

Lorelei”s Presentation Download

Do you think people know about uveitis? What do you wish people knew about uveitis?

Honestly I don’t think a lot of people know about it. I’ve tried to explain it to my friends and when they hear about my surgeries they either get grossed out or I get met with blank stares. I really want people to know that kids get uveitis and arthritis too, in fact JIA is actually more common than childhood type 1 diabetes.

Anything else to add?

I guess I just hope that anybody going through a diagnosis or living with it right now knows that they’re definitely not alone. I also hope everybody is staying safe and staying healthy right now at this crazy time.

What you don’t see: an open letter from a uveitis patient

February 14, 2020.Reading time 6 minutes.

Heart under investigation; what you don't see — Dedicated to my immune system; the ultimate frenemy. Happy Valentine’s Day.

Of the things we take for granted about our existence, I venture to say vision is pretty high on the list. Even if your eyesight starts to go it can usually be fixed through corrective lenses or surgery. For me, and those with chronic pan or posterior uveitis, once it goes, it’s gone. A blur, a washout, a “blind spot,” never to return.

There are known causes of uveitis. It’s a symptom of many other diseases, such as tuberculosis or arthritis. It can also be caused by damage to the eye. However, for the many of us, the cause is unknown.

From the day in December that I first saw a change in my visual field, I was passed from doctor to doctor. I started on an aggressive course of prednisone and sent to the University of Washington Eye Institute where I have since been. I was tested for countless diseases and maladies only to have my condition classified as “idiopathic.” Likely categorized as an autoimmune disease in itself, my form of the disease is accompanied by other complications within my eye. It’s taken the vision from a decent portion of the right side of my right eye.

But, when you look at me you don’t see.

You would never guess that I’ve sat through countless dilations, pressure checks, optic photography, Optical coherence tomography (OCT) and the like. You’d never get close enough to notice the tiny blue mark from the steroid implant in my right eye. Or guess that I have two stints to reduce eye pressure and artificial lenses in both eyes. That nearly all of my earned sick time at work goes to my appointments at the Eye Institute. It’s given me such an immense respect for medical technology and those who research and operate it. I never take health insurance for granted.

When you look at my two beautiful sons you don’t know that for a while I was on immunosuppressants and high doses of steroids that were contra-indicative to pregnancy; that I thought I would have to choose between vision and having children. Now, watching them play and fight and laugh is such an honor.

When you look at me you don’t know that there are times when I live in somewhat of a fog. That busy stores overwhelm my lack of vision. That I’m not as adventurous or confident as I once was and that it’s something I struggle with daily. It’s forced me to slow down, take a breath and allow myself adequate time to do things like get to new places or read packaging or labels in a store.

When I am sick again this winter you won’t realize it’s because once again, every day I take immunosuppressants to slow my body’s response to the battle that is raging in my eye. That vaccines aren’t an ideological game to me. That I take pills and supplements and work on my food and lifestyle choices to preserve my vision.

In a world where “self-care” is such a buzzword it can be hard to proclaim self-love from the rooftops when your body won’t stop attacking itself. I’ve had to make the decision that just as I am managing the physical aspects of this disease, I must also confront the psychological. I’ve learned to allow myself stages of grief and acceptance. When the anger comes, I feel it, but I know I can’t live there. I’ve got to dig myself out; whether that’s with facials and bon bons… or not. (A good read: What to do when self-help fails you, according to a chronic illness advocate) Uveitis is a part of my life but I determine how big of a role it plays to some degree. In the end, I think I’ve come out stronger.

Because when I look at myself, I see someone who isn’t a victim of circumstance or side effects. I see someone who is learning to live life better, no matter what it throws at me. I see someone who knows what it is to see.

Women and uveitis / my pregnancy journey

January 20, 2020.Reading time 12 minutes.

Women make up the majority of uveitis patients, young and old (Faia and Drenser, 2017). In developing nations this is likely due to lack of access to medical care when the uveitis progresses as a symptom of an infectious disease. In the United States, however, non-infectious uveitis is more prevalent (80-90% of cases) (Yeh and Shantha, 2016) and is most often associated with autoimmunity which occurs far more often in women (Fairweather and Rose, 2007).

The first time I saw flashes was when I ran a Jingle Bell run in December 2009. It was cold and thought maybe I was pushing my body too hard. Then in Costco a few weeks later, the lights were reflecting oddly to me, like there was a glare or a smear over my lens. Only, I had undertaken LASIK surgery a few years earlier and had perfect vision. I stopped in the optometrist’s office before it closed and luckily he had time to see me. He looked into my eyes for a long time. “Is your dad with you?” was the first thing he said to me and I knew something was really wrong. I was 27, living with my fiancé, an hour away from my dad who would have supported my reply which was “No. And they’re my eyes, please tell me what’s wrong.” He said he wasn’t sure but that I need to see my ophthalmologist the next day; it was an emergency.

I cried all the way home. Test after test came back negative (which was a relief but also frustrating) and my condition as declared “idiopathic” (unknown cause) which seems to translate into autoimmune or autoinflammatory in the minds of many, even if the initial cause is unknown.

The reason for the higher occurrence of autoimmune disease in women is complicated and not definitively understood. It is thought to perhaps be due to issues with deactivation of genes on the X chromosomes. Since women have two X chromosomes and don’t need two copies of each gene, one of each gene is supposed to be deactivated; when this doesn’t happen in an evenly distributed method, instances of auto-immune disease are more common (Ørstavik, 2017).

Another line of research suggests that female hormones contribute to auto-immunity. Proper functioning of the immune system requires a balance of Helper Cell Th1 and Th2 (see Immune Page). After puberty and until menopause (two milestones that vastly change hormones, which in themselves can throw the body out of balance), a woman’s world in cyclical in nature, with hormones in flux in phases. Estrogen and progesterone promote the anti-inflammatory response and therefore suppress pro-inflammatory cytokines (signal proteins). A study conducted by C. Sanghvi, K. Aziz, & N. Jones in 2004 “demonstrated a significant increase in the incidence of Acute Anterior Uveitis arising late in the menstrual period. We postulate that the withdrawal of either or both [o]estrogen and progesterone provokes the onset of inflammation.”

The anti-inflammatory response happens during pregnancy as well. A rise in estrogen and progesterone signal the body to “tolerate” the foreign invader (growing fetus!) by suppressing the Th1 response. This can worsen symptoms in auto-immune diseases associated with Th2 excess (such as lupus) and relieve auto-immune diseases associated with excess Th1 response (psoriasis, MS, rheumatoid arthritis) (Young et al., 2015) Some research includes non-infectious uveitis in the latter category (Yeh and Shantha, 2016).

My fiancé and I got married nearly a year after my vision problems started with no answers in sight (ha…) but nothing seemed to be progressing. By this time I had seen a handful of doctors and before being referred to the University of Washington Eye Institute, which is where I am still seen. To get me off of the high dose of prednisone I was taking (which is pretty miserable, not to mention unsafe long term), my doctor prescribed steroid-sparing drugs (cyclosporine, methotrexate) which had a whole host of different side effects. A major side effect for me was that I was unable to get pregnant on them.

In 2012, I had surgery to receive a RETISERT implant (a time-release steroid implant in the eye) and a new lens, and weaned off of systemic medication. A year passed and I wasn’t pregnant. Meanwhile my left eye became active and my right eye pressure slowly climbed despite medicated drops. In 2013, I had another surgery to insert an Ahmed valve to reduce intraocular pressure due to the steroids in the RETISERT.

In 2014, I started seeing a naturopath who put me on a low dose of thyroid medication, increased my progesterone, and within a month I was pregnant. “Glucocorticoids such as prednisone can lower serum Thyroid Stimulating Hormone (TSH) levels and decrease TSH secretion… however do not induce clinically evident central hypothyroidism even after prolonged high dose use,” according to Haugen (“Drugs That Suppress TSH or Cause Central Hypothyroidism,” 2009). Does prednisone cause enough of a suppression that patients may need micrograms of levothyroxine (thyroid hormone) to reach optimal levels or was this a separate issue with my body? Yet another unsolved hormone mystery.

My obgyn was a doctor in my small city who had never heard of uveitis and I felt very judged about the 10mg of prednisone I was on throughout my pregnancy despite research I had read pointing to an extremely low chance of side effects (as is true with many things you expose your body to while pregnant). The literature is even more “forgiving” today than when I was pregnant (Read: Prednisone | Prednisolone – MothertoBaby.com (2018) and A review of systemic corticosteroid use in pregnancy and the risk of select pregnancy and birth outcomes (2017)). Of course no one wants to be on medication that makes pregnancy even scarier than it already is, but I weighed the risks of my dose.

The intraocular pressure in my right eye had gone up again during my pregnancy; my body had developed scar tissue virtually blocking off the entire valve. My vision was pretty bad in my right eye at the time and I can remember my face growing hot with humiliation when I would go to pick up my son at daycare and not be able to pick him out of the group! Finally I let the teacher in on my issue (we are still friends to this day although neither of us are at that daycare any longer). From then on she would proclaim “here he is!” with a smile when I arrived and I wondered why I was so hesitant and prideful to not tell her initially. When my son was 5 months old, I had a trabeculectomy.

The night after the surgery my mom stayed with us to help. She and my husband took turns waking with my son as I pumped and dumped my breast milk due to the pain medication I was taking. (Yes, I breastfed on a low dose of prednisone. LactMed is a great resource for medication use during pregnancy; there are applications for mobile devices as well). I remember thinking that night, which was one of my longest nights, with my breast pumps going, my son crying and my eye pulsing in pain, that I just had to get through to morning; I knew that night was temporary even if my disease wasn’t.

I got pregnant faster than I imagined the second time and 22 months after the birth of my first son, we had another little boy. Dealing with the medication, check-ups, procedures, and often urgent nature of uveitis while having small children is definitely challenging, but it can be done with support.

My uveitis flare-ups, unfortunately, have yet to cease and maybe never will. While picking up my steroid prescription with me the other day, my 5 year old asked what the medicine was for. I told him,” for my eye.” He asked why. I told him, “sometimes my eye just needs a little help”; a simple answer for the most complicated part of my life. “Oh, ok,” he responded and we held hands back to the car. -January 20, 2020

Works Cited

Faia, Lisa J. and Kimberly A. Drenser. “Pediatric Uveitis: Challenging for Ophthalmologist, Patients and Parents,” Retina Today, October 2017, retinatoday.com/pdfs/1017RT_Cover_Drenser.pdf.

Fairweather, DeLisa, and Noel R. Rose. “Women and Autoimmune Diseases1.” Emerging Infectious Diseases, vol. 10, no. 11, 2004, pp. 2005–11. Crossref, wwwnc.cdc.gov/eid/article/10/11/04-0367_article.

Haugen, Bryan R. “Drugs That Suppress TSH or Cause Central Hypothyroidism.” Best Practice & Research Clinical Endocrinology & Metabolism, vol. 23, no. 6, 2009, pp. 793–800. Crossref, www.ncbi.nlm.nih.gov/pmc/articles/PMC2784889.

Ørstavik, Karen Helene. “Why Are Autoimmune Diseases More Prevalent in Women?” Tidsskrift for Den Norske Legeforening, 2017, pp. 1–6. Crossref, tidsskriftet.no/en/2017/06/kronikk/why-are-autoimmune-diseases-more-prevalent-women.

Sanghvi, C., Aziz, K. & Jones, N. Uveitis and the menstrual cycle. Eye 18, 451–454 (2004) doi:10.1038/sj.eye.6700713

Yeh, Steven, MD, and Jessica G Shantha MD. “Retina Today – The Burden of Noninfectious Uveitis of the Posterior Segment: A Review.” Retina Today, Bryn Llc Mawr Communications, July 2016, retinatoday.com/2016/08/the-burden-of-noninfectious-uveitis-of-the-posterior-segment-a-review.

Ian YL Yeung, M.D., Nicholas A Popp, B.S., and Chi-Chao Chan, M.D. The Role of Gender in Uveitis and Ocular Inflammation. Int Ophthalmol Clin., 55(3): 111–131, 2015 Summer doi: 10.1097/IIO.0000000000000072

Living with uveitis: all variables and no control

October 26, 2019.Reading time 5 minutes.

Posterior uveitis has been a difficult disease from a “loss of vision” perspective, obviously, and because of all the medications and procedures and time sitting in the doctor’s office. However, for me, it’s the lack of ability to experiment with potential “treatments” other than or in addition to, medication that makes it so maddening. I’m a scientist by training and an experimenter at heart. I want to conduct research, form a hypothesis and test my hypothesis.

Uveitis exhibits an unpredictable and variable clinical course that may be sudden and limited in duration (acute), recurrent and interspersed with episodes of inactivity, or chronic and persistent. It can be difficult to identify patients early in the disease course, given that onset may be insidious. There may be no symptoms before visual impairment, especially in autoimmune conditions limited to the eye, and, consequently, patients may already have experienced vision loss at initial presentation.
Steven Yeh, MD, and Jessica G. Shantha, MD . The Burden of Noninfectious Uveitis of the Posterior Segment: A Review. Retina Today. July/August 2016

With my uveitis, as I’m sure is true with many other diseases, there is no immediate reaction to anything I’ve done, or at least no way for me to realize it. By the time something is amiss, the inflammation has occurred, along with the permanent scaring and possible or probable vision loss. Not really something with which to mess around. Last summer I went through a decent amount of discomfort to get off prednisone, which I have been on and off for 10 years now. I tapered off responsibly after receiving intravitreal injections and wasn’t off more than a month or two when I had more activity show up on my optos photos. So, back on again I went.

I’ve tried various diets, and restrictions (no gluten, do dairy, no nightshades, no added sugar) and different exercise regimes (high impact, low impact). Flare ups have happened when I’m stressed (new baby, no sleep) and when I would think least likely (normal routine or a vacation in Greece). I can’t discern a pattern because I never actually know how long something’s been going on in my eye before I see or feel symptoms (which is rare in itself; often, I’m oblivious to the whole thing). It’s not like many autoimmune disease where someone eats “X”, digestive issues ensue or when this do “Y”, they can’t get out of bed the next day.

The body makes it extremely difficult to get to the retina. For good reason; the retina must be protected! But, what happens when the barriers are compromised and protection is failing? What happens when the pathogen or process your body needs protecting from is within?

My answer is to try my best to control what I can. If I can stay out of the doctor’s office because the rest of my health is as good as I can get it, that that is something. I make my best attempt to follow the topics that I’ve outlined on the Healthy Vision page.

It’s hard when answers are nowhere to be found. You can go crazy searching for them. You have to be your own advocate and be educated, but also can’t get so wrapped up in research that you add more stress to your life!

A couple of years back my mom sent me an article about “living” with chronic illness (read it here). It’s a good read and I thought of it the other day and dug it up in my saved emails. I then realized the coincidence of what I had called this website (living with uveitis). But that is my wish for myself and others: not to just be alive with uveitis but to be living, in the fullest sense of the word. -October 27, 2019

Living With Uveitis

Category: autoimmune