Are you stuck in the “prednisone taper trap?” There was a time where I was stuck in this vicious cycle. You might be wondering what it is the prednisone taper trap. In this article and video, I am going to describe what the prednisone taper is, my personal story, the experiences of others, and give you tips on how to strategically taper off of prednisone. If you are interested in any of these, keep reading!
What is the Prednisone Taper Trap?
Simply put, the prednisone taper trap is the space one experiences in between the medication working for the illness in which they take prednisone yet experiencing withdrawal symptoms of the current dosage.
It is important to note that you must take your time while tapering off of prednisone. Prednisone should never be stopped suddenly.
What Happens if you Taper Prednisone too Quickly?
- Tapering too quickly may be risky; however, it depends on your body on how it copes during the changes of the updated prednisone dosage. It is still best to contact your doctor when you are choosing your prednisone tapering schedule.
What is a Normal Prednisone Taper?
- There are different types of taper schedules and your body’s reaction will determine if that schedule works for you.
- In other words, there is no cookie cutter taper schedule for everyone. It is not one size fits all.
How Tapering Affects White Blood Cells
I took prednisone for a long time. Prednisone was a miracle for me. It allowed me to not bleed to death from a condition I suffered from called ITP. With ITP, one’s immune system attacks their own platelets. Without prednisone, I would have bled to death.
Because of this my doctors gave me a high dose of prednisone — 40 milligrams. Giving me a higher dosage of prednisone helped my low platelet count to increase.
Then, they would try to decrease my dose of prednisone to help me with the side effects I was suffering from. This also caused my platelet count to decrease.
As my platelet count decreased, my doctors tried to continue to lower my prednisone dosage. They continued doing this. However, unfortunately, my platelets would crash. I ended up being stuck in this taper trap.
Then, we do it this cycle all over again. They go back up to 40 milligrams and try to get me back down and back down. Afterwards, my platelets would go up. Crash. Then, they’d have to go back up, again.
My dosages felt like I was on a rollercoaster–40 milligrams decreasing, platelets increasing. Then, the platelets decreasing and eventually crashing. So,
the taper trap is when you are stuck when you can’t get any lower.
The rollercoaster ride of tapering down and finding that “happy medium” (if you will) looks and feels different for every Prednisone Warrior. For me, somewhere around 15 milligrams is where my platelets would stay at the high, but I would tremendously suffer many side effects. For other people, with rheumatoid arthritis, taking a certain dosage can help them be able to actually use their hands; however, the side effects aren’t too bad.
Unfortunately, if they get any lower than their happy medium with their taper, the side effects come back or they’re not able to use their hands. It’s a really tough situation.
The Prednisone Taper story
Today, I want to tell you the story of a guy who (for the sake of privacy) we will call Matt.
Matt is an important person. He owns a business where he supervises 30 people. Therefore, being sick isn’t an option for him, as his team needs him. He needs to be there to run his business. Matt, unfortunately, fell ill with some serious sinus problems. He tried everything from nose sprays to nasal rinses. Surgery was his last resort.
Because of the nature of his job, Matt simply cannot afford to take off two weeks to have surgery. Due to this, he’s taking prednisone as the alternative to help him breathe at night. If he doesn’t take it, he gets so congested that he can’t sleep.
Prednisone, for most people (like me), doesn’t allow them sleep well because it causes racing thoughts, but for him, the prednisone caused decongestion. This allowed Matt to be able to breathe.
As we see, Matt is in a tough situation. He has to be on pretty high doses to get all of that decongestion, but it’s causing moon face and weight gain amongst other horrible side effects. I reviewed this information with him. Where is the dose that you find the best balance of being able to breathe?
Being in a position where you have to choose in between not having too much congestion but not trying to reduce side effects is a difficult spot to find oneself in. For every person it’s different. For me, it was around 15 milligrams, but for him, it might be around 25 milligrams. These factors are dependent upon your body and your condition.
How Your Body Reacts to Taper
Based on the research I’ve done, it’s not something that can be broken down to a science. There have been multiple studies done to try to find the perfect tapering schedule, and they couldn’t find one. While this is medicine, tapering off of prednisone is definitely more of an art than a science (fun fact of the day).
Tapering is the #1 reason people contact me for a side effect consultation, because it’s extremely difficult to take on by oneself.
Fortunately, there are websites that can help you navigate this. There are links in my article or you can use the prednisone taper chart.
Prednisone Taper Chart
As mentioned, there are different types of prednisone taper charts depending on each patient’s dose prescribed by their doctor. There’s a short-term one, a long-term one, and there’s an even slower tapering chart.
The chart shown below shows a taper schedule that takes a year and a half. As mentioned earlier, your personal tapering schedule is dependent on you, your condition, and when the “withdrawal syndrome” kicks in for you.
So, what is withdrawal syndrome?
Simply put, withdrawal syndrome is when your body is going through withdrawals from prednisone, and it feels awful. It’s really hard to diagnose, as it mimics other health conditions. For example: it can look like the flu. You might get a fever and feel totally exhausted. In addition to this, you may also experience fatigue, muscle pain, and joint pain.
Another symptom of withdrawal syndrome is that you may experience several nonspecific symptoms that could be mistaken for COVID. It is truly a whirlwind of an experience!
Whenever the withdrawal syndrome begins, your adrenal system has to recover from taking prednisone. Your adrenal hypothalamic, pituitary-adrenal system–your HPA axis– have to kick back in so that you start making cortisol again, as your body has been not making cortisol properly while you’ve been taking prednisone.
Instead, your body has been replacing the cortisol. Therefore, you must allow your pituitary gland, hypothalamus, and your adrenal gland to re-engaged. After this happens, cortisol production starts back. Now, the rest of your body has to catch up and get out of prednisone withdrawal mode.
As mentioned earlier, tapering off of prednisone is truly an art. It’s a really unique patient-specific art of finding the balance in which each individual needs to taper off of the medication with the right dosage at the right time.
Finding Balance for Tapering
There are two primary questions that are taking into consideration when starting the prednisone taper:
- When is your condition going to get out of whack?
- When is your prednisone withdrawal going to kick in?
Because there is no cookie-cutter answer for either of these questions, I have provided some printable resources on my website.
Using the Prednisone Taper Chart
When using the prednisone taper chart, you should follow the daily and weekly dosage instructions.
Before stating anything, please remember that all medical advice should be sought from your medical provider. However, I wanted to give examples about ways in which you could taper.
Short Term and Long-Term Tapering
Example 1: if you are currently taking 40 milligrams of prednisone, and your doctor wants to taper you down, you can take 40 milligrams daily (recommended to take with food) for a week.
After the week, you may decrease your milligrams by 10. Therefore, instead of taking 40 milligrams, you’ll start taking 30 milligrams for a week. This cycle will continue until you have reached a comfortable dosage of prednisone (or have completely tapered off).
Example 2: Perhaps, trying to taper your dosage 50% in such a short time frame is simply too much for your body to handle. A long-term taper schedule may be more ideal for you. With this schedule, you’d taper down about one milligram per week, which equals to 20% a week.
Feel free to mention this to your doctor. Then, the two of you can discuss which course of treatment is best for you!
It could be either the:
- Long term taper
- Short term taper
Some people get to 5 or 10 milligrams of prednisone to be at a comfortable dosage where the withdrawal syndrome isn’t making life worse for them, and some cannot. I know that for myself, personally, at around 5 milligrams, I began experiencing withdrawal syndrome or the symptoms of my illness returning.
Prednisone Tapering Schedule–Longer Term:
Depending on how long you’re taking prednisone, you can go even slower by tapering by the month. A schedule like this would look like taking (for example) 20 milligrams a month. Then, in month two, you start taking 17.5 milligrams.
Prednisone Tapering Schedule– Alternate Day
If you are extremely sensitive to prednisone and its effects, you could try another tapering schedule called the “alternate day” schedule.
This schedule entails alternating high and low dosages. For example, one week, you alternate in between 9 milligrams and 10 milligrams. The following week, you take the lowest dosage (9 milligrams). After that, the week after, you do the same thing, except you’ll start with 9 milligrams being the highest and 8 milligrams as the low dosage.
Also, keep in mind that you may have to sustain the week-long, same dosage for over a week. Once again, this a situation where you have to make it fit you and your personal needs, with your doctor’s input.
You would continue dropping the dosages until you reach one milligram.
Then, voila! You’re finally off of our favorite nightmare drug, prednisone.
Now, that I have given you examples and resources on how to taper properly, ensure that you speak to your doctor first before making any changes to your prednisone dosages.
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