Toll Prednisone Took on Your Body
What impact did Prednisone have on your body? What symptoms did you experience while on the steroid?
How was your experience weaning off the medication? Have you struggled to do so without adverse reactions? - Jodi, Team Member
Prednisone was given to me slowly built up to 100mg daily. I have been on it for 3-4 years I'm weening off it and now down to 1
15mg a day.
This drug gave me Prednisone Blindness,
Prednisone Diabetes and other issues
Congratulations! It is so exciting that you have successfully tapered down to where you are now. How have you been coping with the side effects? - Jodi, Team Member
Have been on prednisolone for about 4 months now went up to 30mg but couldn't tolerate any higher now back down to 10mg until thymectomy then review as needed. I have a really squishy moon face but it's smoothing out those fine lines and wrinkles!
Water retention as a whole which isn't pleasant. Weight gain though I've only put on a little so a lot of it is water no doubt.
I go super pale about an hour after taking them and nauseous end up with a flushed face about 8 to 12 hours later. Joint pain, skin seems pretty fragile. I work in healthcare and my hands are not dealing well with the constant washing, splitting and sore. Elbows and knee skin is sore. Nausea generally. Some mild acne but I've had that on and off a lot of my life anyway.
None directly related to MG positives of steriods.. The reduced wrinkles haha. Also I've always suffered with my sinuses and they have been pain free the entire time which is nice. My appetite is better on the whole which is making me want to bake more which I enjoy.
Swings and roundabouts 😀yeah I am really hopeful it makes a difference. Robotic. My friend works at the hospital I am having it at as Nurse so she's said she'll come see me so that will be good to see her. Knowing someone on staff will bring a sense of comfort for sure; that's awesome. Let us know if you have any concerns you want to discuss 😀 We are always available to offer a listening ear and support - Jodi, Team Member
I was on predisone for about 6 months I started having panic attacks,water retention sleepless most nights. was slowly taken off. Now I'm on mycophenolate twice a day . Panic attacks have stopped but I still have some nights of not sleeping well. Was told this medicine takes from 6 months to a year before I will notice any improvement. But I'm not complaining because I haven't had any side effects yet .
I'm glad to hear you were able to come off the prednisone. Best wishes, the mycophenolate works well for you! I was on it, and it led to my now remission, and I recently was able to wean off it. The side effects, for me at least, were manageable compared to prednisone and mestinon and other side effects from various other treatments.
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You may be interested in this article covering MG and sleep disorders: https://myasthenia-gravis.com/clinical/sleep-disorders
- Jodi, Team Member
Hello Jodi. I am presently weening off prednisone. My doctor has been easing me from 20mg a day to 10. It's been a 1/2mg reduction every 2 weeks. I'll see him this Thursday for a follow up. The one thing I'm experiencing is fatigue. It's not debilitating as I can do chores, but there's always fatigue in the back ground. Sleep doesn't seem as rejuvenating as I remember it to be.
Take everything moment by moment. Remember, this additional fatigue is not permanent. It will eventually resolve, and you'll notice yourself feeling yourself again. There are multiple articles on our site about fatigue and coping with it. However, I know that additional fatigue feeling from when I had my thymectomy and realize that the tips in those articles may not be enough. I found the only way to help myself out was minimalizing the space I live in and my stuff, and having fewer things to keep up with has saved me energy to put towards other to-dos on my list: https://myasthenia-gravis.com/living/minimalism.
- Jodi, Team Member
