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My Story With Prednisone and Benlysta

Updated: Mar 2, 2021

As much as I hate Prednisone, I am also grateful for it.

If you’ve landed yourself on my blog chances are you have an autoimmune disease. Perhaps even the ones I have, Sjögren’s and Lupus. Both are systemic inflammatory autoimmune diseases, which means the disease can impact the entire body.

Many people including myself have been prescribed Prednisone (a corticosteroid medication) to help manage the disease. Prednisone is a commonly used medication, but it’s a double edge sword. On on hand it will save you from pain, disease progression, and sometimes life-threatening aspects of the disease. But with that savior comes sacrifice. Common side effects of Prednisone includes weight gain, irritability and prolonged use can lead to bone density loss (osteoporosis). That's just the short list, to learn more about prednisone you can read up on it here.

In addition to all that nonsense, Prednisone is a medication that is not safe to stop immediately. The reason for that is that the body produces small amounts of steroids naturally, and your body cannot function without them. If you stop your prednisone cold turkey, it can be bad news for your body. That's why doctors always taper you off the medication, usually very slowly.

The reason why I am writing today is to share my story of Prednisone and how today marks Day 1 (and my fourth trial) of trying to taper off of the medication.

I was first placed on Prednisone in end January of 2018. It’s been 14 months of Prednisone at varying dosages. I have attempted to taper off of it 3 times in the year 2019. I was unsuccessful each time.

In order to understand each attempt, you need to know that each time we tapered it was with the hopes that other medications would be working in my system. Spoiler alert! That wasn't what happened in my case (sadly).

Attempt 1 - I was placed on Prednisone in January 2019 while we were waiting for Azathioprine (Imuran) to build up in my system. In February 2019, my doctor started tapering me off in Spring of 2019. By April I was down to 7.5 mg/day and I could not function.

Attempt 2 - My rhuemy introduced bumped my prednisone back to 10 mg/day (Summer 2019) and introduced mexotrathate at 20 mg/day (I opted for self injection). Once I was on methotrexate for 4 months, and the drugs had started to work, I started a slow taper again. This time I made it to 5 mg/day and I was having troubles functions and lots of pain.

Attempt 3 - My prednisone was increased to 10 mg/day again (Fall 2019). Apparently this is my sweet spot. My doc also increased my Methotrexate was to 25 mg/day (the highest dose allowable for this medication for this cause). Once again I had to wait for the increased dose to work. Tapered again slower this time, I made it to 6 mg/day before pain came back again.

Onwards to Attempt 4! I’ve been on 10mg/day for the past 5 months. my rhuemetologist increased azathioprine last month (4 weeks ago). Today was the first day I took 9mg. I am scheduled to be on 9mg/day for two weeks and then I will drop down to 8mg/day. The plan is to drop down by 1 mg every two weeks till I get to 5 mg/day. By then it will be June and that’s when my next follow up with my rhuemetologist is.


OK, I wrote the above post in April of 2020 and never posted it. Whoops!

And I have a bit of an update on attempt #4.

Sadly, this was a failed attempt also. I am disappointed. When I got down to 8 mg/day I noticed some pain coming back, by the time I got to 6 mg I was having difficulty doing simple every day things such as chewing and lifting my for to my mouth. Repetitive motions seem to be my largest hindrance.

By the time I was on my final days of 6 mg I called my rhuemetologist, I was too scared to do the drop to 5 mg.

My rhuemetologist, who primarily is taking all patients by phone. Hello, we are still in a pandemic, I almost forgot! She is still seeing some patients in person, if the risk is high enough - and I was.

So here I am mid June of 2020 and I have a new treatment plan. For those of you who are just tuning in, I have been on prednisone since January of 2018, at varying levels between 20mg/day and 5mg/day.

My rhuemetologist has decided to start me on Benlysta.

From my understanding Benlysta was a drug specifically made for individuals with Lupus who are struggling to get off of prednisone. Just like me!

This medication is new to market and very expensive. Many insurance plans do not cover it. I am so incredibly grateful that my workplace insurance plan and my husbands plan can coordinate and get close to full coverage. I still have to jump through hoops. The doctors need to fill out special paperwork, both insurance plans needs to see the paperwork. It sounds simple, but there is a lot too it. It's so complicated in face that Benlysta has a patient support program (called the Monarch Program) which helps patients like myself navigate this process.

I am hopeful that this medication will help me!

I will be tracking my journey with it, so stay tuned to see how it all goes down.

Photo Credits: Benlysta (Copyright) 2014 Galixo Smith Kline Inc.

I wish everyone Health and Happiness,

Heather 💜

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