If your child suffers from an autoimmune or autoinflammatory disorder, at some point the use of prednisolone (or prednisone) will come up. Are there negative consequences of choosing this method of treatment or not? How do we decide what to do?
What is prednisone (or prednisolone) & why is it used?
Prednisone is a synthetic version of the corticosteroid your adrenal gland makes. It’s used to calm the immune system down and decrease inflammation. For those of us with hyperactive immune systems, this is a relief (most of the the time.)
It comes in a pill, liquid or shot form. Depending on the age and condition the treatments will all vary for its form and use. The drug lowers the immune system (thus calming it). But it also leaves those taking it susceptible to other infections from microorganisms.
Who would use this?
On this site, we talk about autoinflammatory and some autoimmune disorders. Many of the autoinflammatory conditions (periodic fever syndromes) use prednisolone as a treatment. Some of them offer only prednisolone as a symptom treatment option. Others have additional medications to help control symptoms of the disorder. That leaves us with the question should we use this to treat flares and conditions?
For PFAPA, it is still the most widely prescribed medication (that I can locate) of use to stop a flare. However, there is some research showing regular prednisolone use in children with PFAPA can increase the frequency or intensity of episodes. Some recommend only occasional use. Other studies have shown no change in the next episode (which has been our situation with occasional use).
[ADDITION: Since publication we have visited our specialist again. Now that our son is older, and seemingly having (at times) fewer episodes our specialist has asked we use prednisone for each episode. When asked if research or information has changed, it had not. However, there seems to be a more confident shift in it’s use. We are considering it’s more frequent use, but as this article states, it really depends on how much he will need it. If he continues to spread out his episodes we may. If his episodes continue to be close together we will need to judge on a case-by-case basis. It’s a family’s choice.]
Are there side effects of use?
Prednisolone has long-term side effects of regular use. These are beyond aggravating symptoms of the disease you are trying to control. Those include changes in blood sugar levels, hormone issues, gland issues, weight gain and more. No doctor recommends prolonged daily use over years for this drug.
Temporary side effects can include hyperactivity, alertness, lowered immunity to infection, nausea, heartburn, and more. In our home for use as adults and children, we have experienced inability to sleep, hyperactivity and increased alertness.
What’s the right thing to do?
The important thing is to understand how prednisolone works. You can determine (with your doctor) what is the best and safest for your own child (or yourself). So what can we keep in mind as parents with children with PFS?
It’s harder to determine what’s right for a child (as a mother I say this). You have a young, growing person, that you do not want to alter in a health-threatening way with long-term use of a drug. On top of that, you don’t want to increase frequency or intensity of PFS symptoms (if you believe it can happen). However, your child is suffering and missing out on life on a regular basis that just isn’t good either.
Your choice is best for your family and should be discussed with your doctor. I will share here what we have decided as a family and what we thought about.
In 5.5 years we have used prednisolone on our child three times. We missed our first Thanksgiving as a family and repeated important events we wanted to have for family memories until we got our diagnosis (and prescription). We didn’t want to increase frequency or intensity of episodes. We also didn’t want long-term side effects with regular use. We decided if an episode was going to interfere with a life event that happens once, or is important for family growth, we would use prednisolone. What did we choose?
We chose a family car show event that we attend that our son looks forward to (he was extremely excited to go). And we chose it not just for that event, but because he had just gotten over being ill a week before. We didn’t want him to have an episode and suffer again. The second time was the same reason. He had been suffering from illness for a few months before. An episode began and we wanted him to get some relief. The third time was his first day of school ever in Kindergarten. His fever was very intense (105.9), and began the day before school was to begin. Ibuprofen and acetaminophen were only bringing him down to 103.9. We were only a few hours into the fever, so we did his prednisolone and it worked within 8 hours. He was fever free for his first day of school and the episode was over.
Now that our child is attending public school there may be other occasions we choose to use it. However, we still firmly believe occasional use is the best practice with prednisone. Not only for our son, but also for myself with SLE (lupus).
What are benefits?
In our experience, if dosed in proper timing for PFAPA most episodes stop within hours of the initial dose. Your doctor will tell you if a second dose might help within 24 hours, or provide an option that fits for your child’s disorder. We have never used or needed a second dose. The episode stops and our child recovered pretty quickly from it. It’s a relief for everyone.
Have we noticed changes in the next episode?
Not the next episode. But again – we have only used this drug three times in 5.5 years. It’s not frequent use at all. Our son did get a cold within a week following use after school began, but I think that may have happened anyway. I would suspect with regular use you would see a change in your child’s condition, and it might not all be good. Talk to your doctor about possible effects of regular use.
Prednisone has its benefits and risks. It’s important to consider when the benefits outweigh the risks. Talk to your child’s doctor about its use. and see if you and your child may benefit from its use.