The information provided is for educational purposes only and does not substitute for professional medical advice. The content reflects the unique experiences of the author and is not necessarily the opinion, views, or recommendations of the MGFA. Please consult with your doctor and healthcare professionals for specific recommendations and advice pertaining to your healthcare/treatment.
I will start this article the same way I started the other one: I’M STILL ME.
I never changed.
I didn’t change in the ICU when I lost nine kg (20 pounds) in two weeks due to my MG crisis, I didn’t change when I suddenly gained a lot of weight while on corticosteroids for over a year,
and I certainly didn’t change now.
In just one year, my body has been through so much, and I am still very proud of it.
I am now a 28-year-old myasthenia gravis warrior and thymoma cancer survivor.
Last October, I wrote an article in collaboration with the MGFA about the ups and downs of my new life: “Corticosteroids: A Love/Hate Relationship, You Are Not Your Weight.”
Today, I am about three months off prednisone!
While this is something people on corticosteroids pray for, it also came with its own ups and downs. (Because what’s our life without a little action, right?)
I have always been transparent and open when sharing my journey, and I will keep doing so. With that in mind, I wanted to share what it has been like for me to reduce and then stop my corticosteroid treatment.
I want to emphasize I’m sharing this story not as a weight loss journey at all, but rather to provide a ray of hope. I want to give my fellow warriors who are still on these steroids the kind of hope that I needed when I took them.
(A quick PSA: corticosteroids are meds that should never be stopped without consulting with your medical team first. They are usually stopped by tapering off the dose slowly, over a period that could last months, and under the supervision of your physician. So, be patient!)
UNWELCOMED GUESTS ARE STARTING TO LEAVE
1. The weight and the moon face:
Here was what I looked like when I wrote my last blog post in fall 2023.
Here is what I look like now.
As you can see in this more recent picture, the puffiness in my cheeks is starting to fade away. I am losing the prednisone weight, but it’s not as easy as it sounds or looks. The hardest areas to lose weight are in my tummy, my face, and my neck. I still have the lump that grew on the back of my neck, but it’s shrinking.
It’s hard to let go of the bad habits you develop involuntarily when you’re on steroids. The cravings do not immediately and magically disappear. The insomnia doesn’t just vanish. The weight doesn’t fly away by itself. I am putting in the work for this to happen. It’s all a work in progress, this chronic illness we have, basically like a full-time job.
I started seeing a dietitian, who – luckily for me – is the same one who treated me in the ICU
when I was in mid-MG crisis. She’s familiar with my medical history, the difficulties of eating/
chewing/swallowing when I have MG symptoms, and the ups and downs of prednisone.
I’m working with her to slowly integrate more nutrients, fibers, and proteins into my diet that will help my body detox from the steroids and also have a good amount of calcium that I need in order to avoid bone mass loss.
In addition to that, I’m still working out, as much as I can, on my own rhythm. It’s been a huge help both mentally and physically, especially when seeing the results.
As I previously wrote in my articles, I don’t care about the number on the scale. In fact, believe it or not, my dietitian doesn’t weigh me. We have a different approach in dealing with my goals, which are to eventually be healthier, regain my strength and stay fit, with all my medications.
2. The hair thinning: My hair was very damaged and broken while I was on prednisone. I actually missed that a lot. It’s slowly becoming healthier. I am also trying to use regenerating hair masks to help it return to normal again.
3. The unwanted hair growth:
I think you’ll all be happy to know that it is starting to fall off! It is a slow change, but at least it’s happening.
4. The stretchmarks:
Okay, no. We all know these won’t go away, but I am proud to show them off now, because, along with the rest of my scars, they tell my story.
STOPPING CORTICOSTEROIDS, HOWEVER, ISN’T ALL SUNSHINE AND RAINBOWS
Since the moment I stopped taking them, I started feeling intense body aches. My joints were hurting a lot.
I woke up a few days later not even able to get out of bed. It felt like someone had literally beat me up (seriously, prednisone?! Not fun!).
I had migraines and I still had insomnia.
I felt extremely tired for several days and had to work from bed sometimes.
A week later, my pain was really bad. I had to see my neurologist again, and I was put on an anti-inflammatory medication for a few weeks to help me with my pain.
Some people, to avoid this pain, intentionally choose to stay on a low dose of prednisone for life. However, that wasn’t what I wanted. That would be my last resort, as I had most of the side effects a person on steroids could experience and I was so eager to get off them.
Getting off prednisone definitely also affected me mentally.
For about two weeks, I stayed home, didn’t feel like going out, and was in pain the whole time. The only thing I could think of was: “Not only did I have to deal with the side effects of the meds when I was taking them, but now I have side effects letting them go?! This is crazy!”
My neurologist confirmed that the pain would not last long, and that I was experiencing common withdrawal symptoms.
I would like to point out that not everybody experiences these symptoms. Some people do taper down with no difficulty.
DID IT AFFECT ANY OTHER HEALTH ISSUES?
For the first month, I would say, I felt more MG symptoms than while on prednisone. I felt more exhaustion, and just general body aches.
In the afternoons, my fingers and arms would start to become weak, and sometimes chewing and smiling became harder as well.
As the time goes by, I am feeling better physically now that I am off prednisone.
TIPS & TRICKS WHILE TAPERING OFF PREDNISONE
- Take it easy the first few days, feel what your body is telling you.
- Be honest with your physician about the side effects you feel.
- Don’t overthink it, as you know stress can worsen our MG symptoms.
- Take pain relievers as soon as you feel headaches kicking in.
- Take care of your nutrition!
- Make sure to get bloodwork done every few months, as I’m sure your physician already is doing. It will foretell any unwanted long-term effects of prednisone, as well as how you’re doing off of it.
- Long-term corticosteroid therapy may cause thinning bones, called osteoporosis. When I was taking prednisone, I was also taking calcium and vitamin D supplements to help protect my bones. If you are not, talk to your physician about it.
NO, UNFORTUNATELY, I AM NOT CONSIDERED “IN REMISSION”
I still have myasthenia gravis (since, after all, it’s a chronic illness with no cure), and I am still taking immunosuppressants along with other meds to help me control my symptoms.
But prednisone, thank you…
Even though I hated you for a while, you taught me things that I will never forget. You taught me so much about myself, made me love my body so much more, in all its differences, in ONE year. You made me truly learn the meaning of patience. Because of you, I never judge anyone; I know how much a person could silently be going through.
After opening up about my experience with you, I feel confident enough now to say that I made my peace with the fact that, at any moment, I could be brought back together with you again.
You are a magic drug that works! And you kept me alive and well, and for that I am grateful.
Fellow MGers, I hope one day this will also be you.
Whether you still have your moon face or not, please remember that you are not your weight, you are a true warrior, and you deserve to know that.
Thank you for all the amazing friendships and support I got from the first article, and for encouraging me to write this one.
Thanks to MGFA for giving me a platform to continue sharing my journey.
As always, TO BE CONTINUED…
PS: Reach out on Instagram at @krystel.k if you need someone to vent to! I’m always here! Stay #MGStrong!