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...
Christo,
Can you give us some more information on your high dose IV cortisone treatment. I have read a little about the treatment. How are your symptoms now, after thymectomy and IV treatment? Are you on any meds now?
Thanks,
Sherry
Can you give us some more information on your high dose IV cortisone treatment. I have read a little about the treatment. How are your symptoms now, after thymectomy and IV treatment? Are you on any meds now?
Thanks,
Sherry
About 5 weeks after my Thymectomy I still had very strong MG symptoms, I had a very lazy left eye lid, double vision due to me right eye, my neck was really weak, and I was generally very tired all the time. Due to this and no adjustment in my Mestinon dose helping at all, my Neuro decided that we should do a High dose IV Cortisone treatment, apparently it is used quite a bit here (in Finland) buit I was sceptical.
Anyway, willing to try anything to feel better I had the traetment, it was over three days, and each IV took about 4 hours to administer, you can do it quicker, but might get a bad headache, and a really bad tatse in your mouth. (pineapple juice helps for this)
Well the last treatment was on a friday, and by that evening I felt terrible, and Saturday was no fun either.
BUT by sunday I was feeling much better, both my eyes are now wide open, and I have a lot more general strength back. Although my double vision has improved, it is still a problem, but we are hoping that iot will still correct itself., but we would be trying anything new till I have completed my 6 week Radiation Therapy treatment.
The Cortisome treatment was a three day treatment, and I recieved 1000mg of Cortisome. I had this done at the local neuro clinic, went in each morning, had the IV attached and was home by lunch time.
I would rate the treatment a big success for me, as I feel the improvement. It can have serious side effects, and you doctor will have to check this with you.
I am now on 80mg Mestinon every 4 hours, and 40mg Predisone perday, next week we take the predisone down to 40mg, ansd the aim is to get me to maintenance level of around 5mg every second day. But one has to taper down the use of the Predisoneso we are taking is relatively slow here.
I cant say if the Thymectomy has had any affect, guess it is still to soon to tell, but I live in hope. I had to have the thymectomy as I had a large Thymoma.
Hope that this answers your questions, and my apologies if the answser seems long winded, I just want to give as much info as possible, as I know that I have reallt benifited form what others have shared on this site.
Rgds
Christo
Good luck with your radiation and treatments.
~sherry