[Stellatum]

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

[4-eyes]

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!

[Juanitad]

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!

[Stellatum]

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

[pingpongman]

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

[suev]

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!

[4-eyes]

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.

[brandonc]

the way my doctors do it, i get two days of treatment in a row and i start pushing at 50 ml/hr in about an hour im up to my max of 400 ml/hr but the thing that is the headahce killer is the 50 mg of benedryl they give me in the iv. make sure that they give you the iv of benedryl instead of the pill, often the pill takes too long to work and im normally out of the hospital before it help and im all drowsy and cant drive. if they give it to you in the iv it almost knocks you out so i nap during my infusion

[Stellatum]

Thanks a lot, everyone. 4-eyes, that really sounds like a good idea, the once a month maintenance thing. I see that what I'm doing--getting really weak and then infusing for five days--seems like a bad idea. In general, medical conditions are harder to treat when they get bad. I will talk to my doctor about it.

I know why my neuro hasn't suggested it yet. I have been on Imuran for nine months. He has been very confident that it will help me, so he's been thinking of the IVIG as something to get me through until it kicks in--a sort of stop-gap measure. He says he has had great success with other MG patients and Imuran. I have been less confident the Imuran will be enough, since I've read so many MG stories here, and I can't think of a single "Imuran-only" success story. But because of the way my life is arranged right now, I can afford to treat this conservatively.

Abby

[4-eyes]

Only about half the people I know with MG get by with just pills. Usually it takes a combo of drugs, including IVIG, to keep things controlled. In my case, even that didn't do the trick, so I resorted to the reboot. I still need the meds, but they actually work properly now. So much better.

About the infusion rate: I've been using IVIG for almost 12 years, every 3 weeks! I generally stay on 100 ml/hr, occasionally up to 150, but only when I've drunk a "lakeful" of water before/during/after. My body just can't handle quick infusions.

Good luck.