Highest Steroid Dose You’ve Been Prescribed

Jodi Enders

What is the highest steroid dose you have been prescribed for Myasthenia symptoms? Did a doctor order this after you were in a crisis or significant flare? Have you been prescribed this high dose after IVIG? - Jodi, Team Member

Jodi Enders Moderator & Contributor
I was started with 60mg a day of prednisone after I did a 5-day course of IVIG. This was after my first presentation of the symptoms as a crisis. I started the tapering around 2 years after I started on it. I successfully tapered off the prednisone over a year.
- Jodi, Team Member
Hmvoight Member
I was prescribed 60mg after having a crisis 1 week after diagnosis. I was on a vent for a few days and hospitalized for 12 days. I wasn't sleeping at that dose so my neurologist lowered the dose to 40mg per day. This has been for the last 3 months (I am newly diagnosed as of February). I am hoping to lower the dose as I have gained 30lbs in the last 3 months. Which is making me feel awful. I have an appointment to see about adding IVIG infusions or some other medication to help me get off the steroids or lower the dose. My MG is still considered uncontrolled because of a 2nd crisis 4 weeks ago.
1. Jodi Enders Moderator & Contributor
  I think you will resonate with these articles and discussion about prednisone and unwanted side effects, https://myasthenia-gravis.com/living/prednisone-coping,
  https://myasthenia-gravis.com/forums/toll-prednisone-took-on-your-body,
  https://myasthenia-gravis.com/living/changes-in-appearance.
  
  Your doctor will likely have you stay on the steroid for a few months after starting an immunosuppressant treatment, https://myasthenia-gravis.com/treatment, or IVIG, as you mentioned, https://myasthenia-gravis.com/plasma-exchange-ivig, to give the treatment time to take effect. Steroids, IVIG, and PLEX help control the MG so that immunosuppressants can eventually control the MG on their own. IVIG and PLEX are sometimes used regularly in addition to or opposed to immunosuppressants if the immunosuppressants alone aren't enough.
  - Jodi, Team Member
2. Hmvoight Member
  Thank you so much for the information! I will definitely check it all out.
jimcin Member
I am on 80mg daily
1. Sally Farrier Moderator & Contributor
  That is a large dose how long have you been on it?? How are you doing on it & has it caused any problems? Hope for the best for you!! Sally Farrier... (Myasthenia-Gravis.com (team member).
2. jimcin Member
  I have been on the 80 mg for two months ,in June will drop to 70 mg
Cowboy79 Member
I thought i was in remission and wanted to get off cellcept because of lung infections and Emphysema. Quite taking Cellcept because no systems at all. I stop cellcept the day we received our first Covid shot and in abut 5 months mg came back really bad, and it is Gmg.It took about 3 months to get A NEUROLOGIST and he is a nice guy however he is brand new and you know even the older Muscular neurosogist don't see a lot of a really rare disease , so I have a muscularneurogist app on Tuesday and she has worked in Vanderbuilt and the VA . sure she can get me some relieve and off Prednisone. Thanks for listing to my story Gil
1. Claire Denton Moderator
  Thank you for sharing your experience with us. It can be so frustrating waiting to be able to be seen by a specialist. I hope that you and your doctor can work together to get you back into a remission, even if it is drug induced. Best wishes to you! - Claire (Team Member)
2. Jodi Enders Moderator & Contributor
  Hey! How did that appointment go? - Jodi, Team Member