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Old 01-13-2018, 10:23 PM  
AnnieB3
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,290
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I would caution that some MG patients can't handle Z-Pak. I personally do fine on that and Biaxin (Clarithromycin). Quinolones are relatively contraindicated as well. DO NOT take Ketek (Telithromycin)!!!

I've included some of the pdfs for you. Knowledge is key while managing MG. You can do a search on MG + myasthenic crisis and find more info. If you are ever unsure about a drug, search "drug name + acetylcholine" to see what effects the drug has on reducing or increasing acetylcholine (or no effect).

Some patients can't even handle a 10 mg. drop in Pred. Track all of your symptoms. If you begin to be extremely tired, have sweats, or feel just completely out of it (or weaker), then the drop is too fast. As I said, you can have an adrenal crisis if this goes too quickly. Even a great neuro is not an endocrinologist! Those adrenal glands need some time to catch up to withdrawal.

A pulmy can figure out what your normal MIP and MEP are, and other readings. That is key if you begin to have an exacerbation. If you say where you live (general area), someone might be able to recommend one. There's no time to mess around with a substandard pulmonologist during a crisis! And do not let anyone tell you, if you have hyperventilation during an arterial blood gas, that you are anxious!!! The hyperventilation would be from insufficient breathing. Yes, doctors have been known to do that.

My biggest advice would be to let this simmer for a while. AND don't push yourself. That's how people end up in a MG crisis. The worse someone is with MG, the longer it takes to recover. Maintaining some kind of stable normal instead of sending your body on a weakness roller coaster ride is the best plan!

We are very lucky to have doctors like Dr. Weiss (St. Pete, FL), Dr. Howard (UNC), and Dr. Kaminski to help us. There are more, but those are a few great ones.


Annie
Attached Files
File Type: pdf MGCrisisExtubation.pdf (73.1 KB, 11 views)
File Type: pdf MGRespiratoryComplications.pdf (95.6 KB, 8 views)
File Type: pdf NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 32 views)
File Type: pdf NonInvasiveVentilation.pdf (76.9 KB, 9 views)
File Type: pdf Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 5 views)
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