Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Tracey, somehow I missed that Skyler has MG. I was recently talking to my local neuro about steroids. He says that he has a 9 year old patient with MG who is doing very well on alternate day prednisone therapy. I think he said she's been on it for 6 yrs! Anyway, by doing alternate days, the side effects are minimal. (He says nonexistent but I'm always skeptical) So, you may have already been here but just wanted to throw that out. Ann Shepard (Lynden, 6, MAE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Ann- Thank you for thinking about us! Yes, Skyler is also on alternate day Prednisone therapy. We started at a 100 mg per DAY and are down to 35 mg/ every other day. He also takes another immunosuppressant, Imuran, daily. He had a 'thymectomy' (removal of the thymus gland) in October and although we haven't seen any real effects yet, I am told it could take up to 2 years to determine the operation's efficacy. (I thought *just* epilepsy was bad until this little disorder came along as well...) No rest for the wicked. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Wow, what an amazing family you are. I will certainly keep Skyler in my prayers and will cross all fingers for the surgery to prove successful. Ann Re: Skyler Ann- Thank you for thinking about us! Yes, Skyler is also on alternate day Prednisone therapy. We started at a 100 mg per DAY and are down to 35 mg/ every other day. He also takes another immunosuppressant, Imuran, daily. He had a 'thymectomy' (removal of the thymus gland) in October and although we haven't seen any real effects yet, I am told it could take up to 2 years to determine the operation's efficacy. (I thought *just* epilepsy was bad until this little disorder came along as well...) No rest for the wicked. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Wow, what an amazing family you are. I will certainly keep Skyler in my prayers and will cross all fingers for the surgery to prove successful. Ann Re: Skyler Ann- Thank you for thinking about us! Yes, Skyler is also on alternate day Prednisone therapy. We started at a 100 mg per DAY and are down to 35 mg/ every other day. He also takes another immunosuppressant, Imuran, daily. He had a 'thymectomy' (removal of the thymus gland) in October and although we haven't seen any real effects yet, I am told it could take up to 2 years to determine the operation's efficacy. (I thought *just* epilepsy was bad until this little disorder came along as well...) No rest for the wicked. Tracey Quote Link to comment Share on other sites More sharing options...
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