Thursday, July 30, 2020

The Love it and Hate it Drug

Prednisone molecule image found on


Yeah. About four years ago, Dr. Young Guy and I made the decision to taper then discontinue the low dose daily prednisone that I had been taking for hmm......I don't remember exactly......but a lot of years. I had been taking it for the debilitating fatigue, malaise, and general joint pain that came with my flavor of Sjogren's. But as time passed, I think I became acclimated to it until I reached a point where I just didn't think it was as effective as it had been previously. Since steroids -- of which prednisone is one -- are extremely effective in inflammatory situations, but also come with some potentially severe side effects, I decided to stop taking it. And, for quite awhile, I was pleased with the results. One less side effect to worry about, one less pill on the morning stack. Not terribly noticeable that it was absent. Cool.  

To refresh your knowledge of prednisone, read this.                                        

So I haven't been on daily steroids for a long time. 


One morning last week, I woke up yet again to pain in my hands and feet; I had to grit my teeth to close my hands into fists, and I dreaded that first step out of bed. I lay there, opening and closing my hands and wondered why the heck I was starting my day that way. But I shuffled off -- slowly -- in my orthopedic bedroom slippers which were extraordinarily expensive and didn't help my pain at all -- and poured myself my first glass of cold brew coffee. 

Which is AMAZING. I make it myself having refined my process. I'll share that another time with y'all.

As the caffeine hit my brain cells clearing the first layer of brain fog, suddenly it occurred to me: THIS IS NOT MY NORMAL.


I have been putzing around with these symptoms for at least three months. They began gradually and I think that, like the frog in the boiling water analogy, I became accustomed to the new pain and in some wackadoodle manner accepted it as routine. 

The frog analogy? If you haven't heard it, it goes something like this: If you put a froggie (poor little thing. I'm glad this is just a story. DON'T TRY THIS AT HOME, KIDS.) into a pot of cold water, then put froggie and pot over a very low flame, the water heats so gradually that he stays in the pot far longer than he would if he had been dropped into a pot of hot water. 

Sad, but true.

So like the froggie, I sat in my pot of water while these weirdo pains kept heating up. Finally last week, I made the decision to jump. And I'm so glad I did.

As anyone with Sjogren's knows, the symptoms of this disease are varied and insidious. I had been dealing with osteoarthritic pain in my hands for decades, but this was completely different, especially the fact that it was something that I awakened to every morning. I've been buying every kind of orthopedic shoes and insoles with metatarsal bars that I can find, which do seem to help during the day but the next morning, I am back to pain square one. My shoe rack is becoming embarrassingly full of pairs that seemed to be promising but didn't meet my expectations. Bummer. Expensive. 

I contacted Dr. Young Guy that day. He thinks that I have acquired some kind of inflammatory arthritis and prescribed a course of prednisone for me with a follow up appointment after I have been taking it for ten days. 

Which brings me back to the title of this post. 

After four days, I can say that my symptoms are less; still there but severity diminished. Whew. And, to add to the whole bizarre mix of symptoms, a mysterious itchy and scaly rash on my face that appeared over the last month is disappearing amazingly fast. 

So while I can definitely see some benefits to taking this round of prednisone, there is also some drawbacks, the most irritating being an irresistible urge to bury my face in a chocolate cake topped with ganache; warmed then served with a slightly melty scoop of vanilla bean ice cream.

Ooooo. Excuse me a sec as I refocus my eyes and return to reality. Whew. 

Some folks experience an appetite decrease while taking steroids, I however, am not as lucky and have carb cravings that stop just barely short of being totally overwhelming. So far I'm beating them back with lots of fresh fruit, wish me luck with that. 

Then there's this totally fake sense of energy. Dangerous stuff, that. I find myself beginning big tasks, then somewhere around 4 pm, *poof*. It all goes away leaving me feeling as though I have been dropped from a three story building. After which I need to get horizontal and stay that way until bedtime. I'm trying hard to rein in this sensation, with some success. So far. 

Luckily, my mood seems to lift somewhat when I am on pred. I am not certain whether this is due to decreased yukky symptoms, or is a result of artificial energy. But for whatever reason, I'm glad it is there. 


I need some optimism right now even if it comes in the form of a little white tablet. I really, really, REALLY don't want to add yet another autoimmune condition to my already lengthy list. 


But I look forward to my next appointment with my rheumatologist when we can sit together, face mask to face mask, and discuss this thoroughly. 

I'll keep you posted. 


Amy Junod said...

Hopefully the taper will linger in your body for a while? It used to for me. I too am off daily prednisone. It's done quite a bit of damage, the long term use of it. Without other therapies though, I'm not sure how I would have functioned.
Hope you continue to feel less achy!

Unknown said...

Hi Julia,
I'm back on prednisone (methylprednisolone) again too. I was completely off for several months and like you, the symptoms creep up ever so insidiously until it eventually dawns on me through the fog that I'm so miserable and incapacitated because the inflammation is raging.
I break my dose (pill) in half taking 1/2 first thing in the AM with some toast. Then the other half in the afternoon, around 3'ish. I'm on a very low dose, 4mg which I think is equivalent to 5mg of prednisone. You might try splitting your dose to see if it helps with your crashes. It might help with the carb cravings as well. I don't know because I'm one of the lucky ones that don't seem to have any craving issues with corticosteroids.
Good luck... both with the prednisone and your efforts in controlling the cravings with fruit!

annie said...

I consider myself lucky as I was on prednisone many years ago, only for a short while, to clear an all over body rash. To this day we still don't know what caused it: it just appeared, then disappeared. This was before we knew I had sjogren's. It is medication that does help, but many doctors don't like prescribing it for long term because of side effects. People with health issues like autoimmune don't have a choice.

I hope things get better for you, Julia. You have been having a rough time lately. Hope your family is well amid this pandemic. Be well.

P.S. the suggestion of splitting a dose of meds is very good. I do this with plaquenil as I did not do well with taking a full dose, so I take a dose in the AM and another in the PM and I tolerate it. It was suggested by my pharmacist.