FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
|
12-26-2011, 01:13 PM | #1 | ||
|
|||
Senior Member
|
I'm getting really weak here, so I'm going to ask for a course of IVIG. The problem is that I have a cold, which gives me a headache. IVIG always gives me headaches. I'm worried that if I go in with a headache already, the IVIG headache will be much worse. Does anyone know if there's any reason to think it won't? Is is inadvisable to get IVIG when you're sick (it's a pretty bad cold)?
I may wait a few days, but I'm really tired of hanging out on the floor so much, even though my sweet husband and kids bring me pillows and keep me company down there. Abby |
||
Reply With Quote |
12-26-2011, 02:50 PM | #2 | ||
|
|||
Member
|
There's no reason not to do IVIG with a cold. I've done it while ill a few times. You really need to stress to the infusion nurse that you have a history of severe headaches with IVIG and need the drip to run SLOOOOOOOOOOOOOOOOOOOOOOOOOOOOWLY. Also, ask if it might be possible to have a bag of fluid infused following the infusion to make sure you're well hydrated. Start pushing fluids now, so you're nice and juicy for the IVIG.
Good luck! |
||
Reply With Quote |
"Thanks for this!" says: | Stellatum (12-26-2011) |
12-26-2011, 05:37 PM | #3 | |||
|
||||
Member
|
Do you get pre-medicated? I tend to get a headache unless I have my tordahl (sp?) which is an amped up aspirin product. They give it in your iv before they start the ivig. I also get 25 mg of benedryl iv and between the 2 meds, I don't get a headache most of the time. I have them start my iv at 125 and amp it up slowly until they get to 175. If I start to feel any kind of a headache, we take it back down to 125. Good luck!
|
|||
Reply With Quote |
12-26-2011, 05:52 PM | #4 | ||
|
|||
Senior Member
|
You know, I don't think I have so much trouble with headaches while I'm getting infused. It's just that both times I've had IVIG I've had a daily headache for a month afterwards. Not a bad headache, and it goes away with ibuprofen, but a month is a long time.
I'm rethinking the infusions. I feel a lot better today. I think that this crash was brought on by the bad cold I have. Does that make sense? If your immune system is fighting a virus, does that ramp it up in general so that it also increases its attack on your neuromuscular junctions? This disease is so up and down that it's hard to tell what's triggering it. Abby |
||
Reply With Quote |
12-26-2011, 05:56 PM | #5 | |||
|
||||
Member
|
Infections will knock me for a loop. It is worse than stress or hot sun on me. Two days ago I woke up with a low grade temp and felt really bad but a couple asprins took care of it and I felt a lot better.
Mike |
|||
Reply With Quote |
12-26-2011, 11:28 PM | #6 | ||
|
|||
Member
|
Any infection can make a healthy body weak and wilty - -so for an MG'er it's like weakness squared!
Hope you feel better soon! |
||
Reply With Quote |
12-27-2011, 09:35 AM | #7 | ||
|
|||
Member
|
You would probably do much better with scheduled monthly infusions (1 day) rather than waiting until you crash and then do 5 days worth every few months. That is normal protocol, and much safer on the kidneys, etc. You would feel much more stable all the time as well. I highly recommend you talk to your doctor.
|
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
IVIG headache | Myasthenia Gravis | |||
IVIG Question | Myasthenia Gravis | |||
IVIG Question | Myasthenia Gravis | |||
Question about IVIG | Myasthenia Gravis | |||
Question about what would you do concerning IVIG | Myasthenia Gravis |