Quote:
Originally Posted by bny806
Yes, PEX makes me nervous for all of those reasons!! Did you get a rash too?? I'm sure i look like I have scabies at times.. I will literally claw my skin off .. I look like I have eczema.. though it is getting less and less with most infusions..
Agreed with the headache thing!! I had migraines for years (haven't had any since being off birth control pills).. I had a gradually worsening HA in the hospital.. and fell asleep after all the benadryl... when I woke up with that AWFUL headache.. I rang the nurse button to have them bring me some Motrin.. but by the time she got in my room (5 minutes).. I said ok, i can't handle waiting for almost an hour for it to kick in, i need something IV... Toradol was amazing!!!! They tried other things too, but the toradol was the best! no fun at all! So do you just do mestinon for now? I haven't tried any oral meds.. but I would like to just try them.. it would be great to decrease my infusions, as my poor veins are tired..
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Oh, yes, I had rashes. The palms of my hands were AWFUL! I was clawing, too! I also got a rash on my chest and something that looked like Rosacea on my face. The ER tried demerol and phenergan for my headache the day after my infusion -- it didn't help much and the ER doc (against my neuro's orders) gave me Morphine. NAUSEA!! The smart nurse stopped the "push" when I said I was sick to my stomach -- later learned that Morphine could have tanked my breathing. My headache finally dulled enough that they sent me home (after doing a CT scan). I took Fioricet almost around the clock for the next couple of weeks.
Funny thing -- after menopause my migraines stopped. IVIG seems to have brought them back -- and even worse than before. I think the aseptic meningitis may have "fried" something in my brain.
Yes, I only use Mestinon. As long as I am CAREFUL about everything else, the Mesty has kept me going. Can't use immune suppressants due to cancer running in my family.