Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members

7,414 Posts

0 Online

MaureenNY 06/02/2014

Hi Everyone, Just a question, I am in the middle of a tapering of my prednisone, ok.. so maybe not realy them middle, basically I just started to taper but the doctors need to get the levels down for my thymectomy. Meanwhile i have started IVIG. Can you tell me how low your dose of prednisone was for surgery? I am currently at 60/50 dosage with a step probably being taken today or tomorrow as I have been on that for 2 weeks now.

I have heard some folks having surgery with 40mg dosage and some had to get down to zero. Just trying to figure out what the timing might be.... Waiting on a call from the doctor but figured I would see what you all had to say today as I am stuck strapped to an IV for the next several hours..

M

philosophress 06/02/2014

I believe mine was at 30mg/day when I had my thymectomy; didn't start tapering until after surgery.

Joe-Fodor 06/02/2014

I was at 60 mg/daily when I got my thymectomy! But there was nothing that could be done as a taper takes a long time and I was anxious to "get it over with." I don't think I had any bad outcomes, but my sternum hurt for a year or two -- now (3 years later) it don't.

I got two days of IVIG beforehand -- the hospital bill was $80,000 for the IVIG alone! But I was lucky enough to have insurance. ~Joe

MaureenNY 06/02/2014

Joe, They started me on the IVIG today at home but i am awaiting information on the dates of my surgery.. The IVIG is to speed up the taper but i am not sure how that's going to go.... and where they want me at prednisone wise by the time they do it... Add to that, the fact that they will now need to do a secondary surgery at the same time and who knows when I will have the darn thing out. I just want to move to the next stage in all this. However, I am focusing on being patient and doing one thing at a time.. today IVIG, and speak to doc about secondary surgery and prednisone taper.... tomorrow.. change conquer the world.
:-)

Yes, thank god for medical insurance!

SeattleWriter 06/02/2014

I'm doing 20mg every other day right now, and both neuro and surgeon want me to stay at that dose for the surgery next month.

How's the IVIG going?

deleted_user 06/02/2014

I was at 20mg daily when I got my thymectomy..Now down to 2.5mg but tapered off slowly...that was 5 years ago when I got my thymectomy...Tapered down slowly after that..Down to 2.5mgs now dont think will be down any lower or ever off it but better.I still have eye issues and seem to be getting a bit worse so hope wont have to go up but who knows...But anyway I wish you luck and hope all goes well with it...Hugs

MaureenNY 06/02/2014

Hi everyone, Thanks for the responses, Seattle, the IVIG went well, really the process is not a big deal and I wasnt so nervous about that persay, its the whole sitting for 4 hours making small talk with a visiting nurse thing, but anyways, I got through the first day, 4 more to go, so far no side effects, which is good, and I spoke to my neuro who wants to take me down to 50/50 now from 60/50 and she will speak with my surgeon and they will come up with a number that works and she will discuss it with me next week when i visit. So I guess thats my answer... "we will let you know later"

Cj416 06/04/2014

At the time of my thymectomy I was taking 20 mg , and with plasmapheresis that gave me a good boost. Ivig for me was no longer an option due to side effects.

Good luck with you're ivig , you will see it's not so bad after all.

Cj

MaureenNY 06/04/2014

You are right, IVIG is no big deal, I am not a freak with needles so its not a big deal, but man is it BORING. I am trying to do the work from home thing while they do it, but with someone 3 feet from you the whole time its a little wierd to be on the phone etc. Overall, its fine, no side effects persay, just kinda hanging out all week.. good times good times..hoping i see a change in how i feel.. so far.. nothing bad.. but nothing good either...

SeattleWriter 06/04/2014

Glad it's going well, Maureen! If I can get a hold of myself with regard to the needle, I will following in your footsteps. :)

Hope you get some good results soon.

Join the Conversation