Hi and welcome back to this six-part blog series about my 2023 – 2024 journey with autoimmune pancreatitis. Today is part four, but if you missed the first half of this series, be sure to read those posts first here!
- Part 1: My first hospital stay, what causes pancreatitis, my pancreatitis symptoms and off-the-charts lipase levels, and my in-hospital treatment plan.
- Part 2: My second hospital stay, testing and procedures at the hospital, my abdominal MRI, starting a low-fat diet and digestive enzymes.
- Part 3: My Third Hospitalization, a Specialty Endoscopy, and Starting Prednisone
This post will cover my three prednisone courses and tapering structures, why I declined my GI’s recommendation to start azathioprine, and the first warning sign that my pancreatitis might actually be drug-induced with an autoimmune component.
So, we left off with part three in early January 2024. This was a few weeks after being discharged from my third and final pancreatitis-related hospitalization, and I was on 40 mg prednisone. Overall, I was feeling decent and was able to eat with far less pain!
However, I obviously couldn’t stay on prednisone forever. And that meant one thing: the dreaded taper. I was put on three different courses of prednisone throughout the first half of of 2024, and each taper was different.
Prednisone Course #1
December 26th, 2023 – February 20th, 2024
Though my pain was lower now, I was still losing weight because I’d get ridiculously full after the smallest amount of food. This is called “early satiety” and is very common with pancreatitis. So, though it was a relief to know this was expected, it still sucked to go through it.
Something that helped was taking a sip of water after each bite. I don’t know the science behind this (maybe it helped with digestion or kept the food moving in my digestive tract?) but it really did help keep the pain levels down.
Another thing that helped was eating my meals over the course of an hour; eating any more quickly would cause the pancreatitis pain to return. This meant chewing thoroughly and putting my fork down between bites. If I was eating while watching TV, I’d only take a bite at each scene break. Or, I’d eat while working because my main focus would be my task on the computer and then I’d take a bite here and there.
All these tactics helped me eat slowly, thus keeping the pain at bay.
Soon, it was time to taper down from the 40 mg. I followed my doctor’s instructions and began weaning prednisone by 10 mg every seven days.
The taper went well until I got down to 10 mg/day. The terrible, ominous “bowling ball” pain returned. On top of that, I also regularly experienced what I call pinching pain. Imagine someone taking a sewing needle to your upper abdomen and stabbing it repeatedly. I completed the taper, but with this combination of abdominal pain, I knew my recovery was not going as expected.
Prednisone Course #2
February 21st – February 27th, 2024
Because my autoimmune pancreatitis (AIP) symptoms returned, my GI had me restart prednisone—this time, I was to take 60 mg for seven days and then end it with no taper. (Apparently you can do this if you take it for less than a week.)
These seven days were bliss. Though I still had to eat slowly (and had to deal with the intense side effects of such a high prednisone dose) I was able to enjoy food a lot more while on 60 mg. This was a good thing—it was another sign that my pancreatitis was autoimmune-related. This high dose of steroids seemed to be effectively suppressing my immune system.
It might sound like this story is repeating itself, because you may have guessed that things didn’t resolve after this short prednisone course. You’d be correct. Just days after ending this 7-day course, the pancreatitis pain returned again.
Now, I was frustrated, emotional, and feeling like a hamster on a wheel. It truly felt like this was going to be my life—cursed to rely on prednisone and never able to enjoy food ever again. It might sound dramatic. But to me, it sounded realistic. It felt like the truth.
The Option to Take Azathioprine
At this point, my GI team wanted to put me on azathioprine (Imuran). It’s pretty standard to put AIP patients on azathioprine if they don’t respond to prednisone.
But something in my gut was telling me not to go on azathioprine. I declined for three main reasons:
- Azathioprine can be a harsh medication with lots of potential side effects. And get this. One potential side effect is—you guessed it—PANCREATITIS.
- Prednisone puts the vast majority of Type 2 AIP patients in remission, so if prednisone wasn’t working for me, I wanted to figure out why rather than nuking my immune system.
- Most importantly, my gut was telling me to not take azathioprine. I truly believe in relying on your gut instincts, and when I get instinctive feelings like this, they’re rarely wrong.
So, I declined azathioprine. I told my GI I wanted to give prednisone a third and final chance. I told them I’d do a very slow taper this time around, since some patients do experience a return of symptoms if they taper too fast. (Perhaps that’s what happened to me the first two times.) My team really wanted me to go on azathioprine, but they respected my decision not to.
Remember, you as the patient have power. You do not have to take a certain medication your doctor suggests if you personally don’t feel comfortable with it. Keep the line of communication open with your doctor and explain why you don’t want to take it; but ultimately, the decision is up to you.
Prednisone Course #3
March 3rd – July 15th, 2024
For this third and final prednisone course, I jumped back on to 60 mg prednisone a day. As soon as I did, the pain decreased and my eating improved. I stayed on this high dose for three weeks, then got the go ahead from my GI team to taper.
This time, I’d told them, I’m doing things differently. This time, I decided I would do an extremely slow taper since the fast taper and no taper obviously weren’t working with my body. This time, I would only decrease by 5 mg every two weeks.
Prednisone Slow Taper & Side Effects
I definitely think my body needed this slower taper. Each week after decreasing my prednisone by 5 mg, my body felt its side effects, which would then resolve at the end of two weeks when it was time to taper down again. I experienced many intense side effects, including:
- Buzzing: This is the best way for me to describe it. It felt like my body was a live wire. There was a slight vibration just beneath my skin. Like bees were in my head. Lightheaded. A little out of it. It was a very strange, uncomfortable feeling.
- Muscle aches: Each time I tapered down, my entire body would become tender. My neck, back, ribs, and arms, all felt as if they’d been slapped with a meat tenderizer. It hurt to give hugs and put on clothes.
These two side effects would last for the two weeks, usually decreasing in intensity as the days passed as my body got used to the lower dose of prednisone. Then, two weeks later when I tapered by another 5 mg, these side effects would return in full force. Though annoying, it was a helpful sign to know it was taking my body two weeks to adjust to each little taper.
In addition to these side effects that cycled with each 5 mg decrease, I had a few other side effects that didn’t seem to be correlated with the taper.
- Shaking: My fingers and wrists had a slight tremble to them when I held them in certain ways—usually above my keyboard. Thankfully, this only really happened when I was above 50 mg/day.
- Edema: I’ve been on prednisone many times, but this was the first time I experienced edema, or swelling from fluid retention. It was all in my feet, traveling up to my ankles and calves. My feet were puffy and my shoes were tight! I ended up getting compression socks.
- Moon face: It wouldn’t be a true prednisone course without chipmunk cheeks, am I right? ??
- Tingling in legs and arms: This was one of the more suspicious side effects that made me a little worried. I’d get this tingly feeling in my feet that would slowly climb like a wave up my calves, thighs, and into my glutes. On worse days, it would happen in my arms too, pins and needles rushing up my arms up to my shoulders. The tingling got worse if I was sitting for long periods of time. This could have been the prednisone, or it could be a B12 vitamin deficiency. My most recent B12 labs said I was at 291 pg/mL (normal range is 232-1245 pg/mL). So although I was technically within normal range, my primary care doctor said that people can still have symptoms if they’re on the lower side of normal range. So I started implementing fortified cereal into my daily diet. Admittedly not the healthiest thing, but it was high calorie and low fat—so it fit into my restrictive low-fat diet.
- Ravenous hunger: I literally could not stop thinking about food. Pretty much every waking moment, I’d be plotting my next meal. It was a hyperfixation, and one that I was enjoying now that I could actually eat. (Though I was still on the low-fat diet).
- Dry and cracked hands: My hands were dry and scale-like between my fingers. I thought perhaps it could be scleroderma, an autoimmune condition that causes the skin to thicken and harden, but thankfully my rheumatologist ruled this out. It was just the prednisone. She prescribed me cortisone cream and I also slathered Vaseline on my hands at night and covered them with socks to help retain the moisture.
Getting Out of the House
Though prednisone’s side effects were rough this time around, this third course allowed me to do some fun activities outside of the house. From March through May, I enjoyed some hobbies, like going to some local writing events, taking walks around parks with my husband, and going to a poetry reading event.
These low-key activities were not only fun but great for my mental health—something my housebound body really needed!
Returning Pancreatitis Symptoms
Though this slow prednisone taper was going well overall, my pancreatitis symptoms returned on May 5th when I was on 35 mg prednisone. Labs from May 7th revealed my lipase had decreased to within normal range at 38 U/L! But this was also disheartening since it didn’t match up with my pain.
I spoke with one of my GIs, who recommended I pause the prednisone taper until the pain subsided. I remained on 35 mg/day for an extra few days, then, once I started to feel better, I dropped down to 30 mg.
The returning pancreatitis pains sent alarm bells sounding in my head. I really shouldn’t be having pancreatitis pains at this high of a dose and this far along in the prednisone course if this truly was purely Type 2 AIP.
My gut was telling me something else was at play.
Stay Tuned for Part 5
In my next blog post, I’ll share about the research I conducted that led me to what I believe was the ultimate culprit of my pancreatitis.
Want more information on autoimmune pancreatitis, my symptoms, and this crazy diagnosis journey? I’m breaking my Instagram hiatus to share lots more info about this lengthy health update. Find me on Instagram here.
Thank you for reading, and chat more soon!
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