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
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
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
