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
I don't like prednisone at all. I have to take both prednisone for gMG and steroids for COPD so I can breathe. I can't relax and, in particular, it's very difficult to stay asleep, so I'm always badly sleep-deprived. I'm not on a particularly high dose, 10-20mg for MG and four rescue inhaler puffs per day, but my body just won't tolerate it. Have to find some way to cut back.
started treatment Sept 10 last year, first got plasmapheresis 5 times, then came home with loads of meds, including 60 mg prednisone daily. Stuff drove me crazy, had panic attacks, nightmares, got dry eye along the way, and am slowly getting weaned off the stuff. Still on 7.5 mg, then a month of 5 and it will be gone. The doc is substituting vyvgart for the prednisone, and started me back on mycophenolate 2000 per day. I asked what it does, he says suppresses the immune system. my doctor is a neuro muscular specialist.
Diagnosed in June last year Pyridostigmine was started twice a day and mouth muscles were so weak lost 8 kg in weight. Steroids were started in August 20mg. Started having hunger attacks to a level never experienced before. Started gaining weight 1kg a week and face was getting rounder and soon looked like a hippo!! Omg that was awful. Sleep was a major issue only slept 2 hours a night and felt awful all day. Asked Neurologist to give me something else besides steroids and then I was started on Azathioprine 100mg a day. Suffered awful
Side effects and it was a period of sheer misery. Fatigue was so bad could hardly do anything.
Had to
Make drastic adjustments to my life. Now after 5 months on it I am feeling better and had to reduce steroids too taking 5 mg. Reducing 1 mg every month. At last feeling 50% better. Pls ask health experts for alternatives if medication is causing lots of side affects. Sending positive vibes to everyone. 😊🙏🏽
A steroid burst that I was given, while awaiting the benefits of azathioprine, injected me with so much energy and enthusiasm that I couldn't do without it. For the last six months I have been on a 7.5 mg maintenance dose. I don't need it for any obvious MG symptom, and it makes weight gain a problem, but the benefits of energy and ambition are worth the so-far minor side effects.
It's great to hear that the steroid burst gave you such a boost of energy and enthusiasm. Balancing the benefits with potential side effects, like weight gain, can definitely be challenging.
Jodi, Team Member
