Anyone else this sensitive to IVIG?
 

So, I'm getting my ivig now.. and I have had aspetic meningitis 3 times in the past 2 years... once really bad (before we knew about rate control etc).. and twice milder (once when the nurse programmed the rate wrong, I woke up from benadryl nap and it was going at 210!.. and the other time when we tried a slightly higher rate)
So, we couldn't remember if they ramped me up every 15 minutes or 30.. so we did the first one 15 min.. and i started getting a headache.. and temp started going up to almost 100 already.. that quickly... I'll get the chest pain, headache and neck pain so i know immediately when it starts to happen.. soo, not sure if this is common, or if i'm just unique in that way!! Just curious! we have since slowed the rate down.. so I'll be sitting here ALL DAY, but that's ok!

If slowing the rate works, than it is the best thing for you. what can you do with that time you have saved if you are totally miserable after and have to go to bed? I'd rather sit all day than have that awful sickness. I got through the first day ok, but woke up with a killer headache the second day and only got worse from there. Even with Benadryl, pseudo fed, Tylenol and a huge dose of ibuprophen, along with decrease in infusion rate, I got sicker as the day went on. Fever, sore throat hugely swollen glands, couldn't move my eyes or head without excruciating pain. Trying to touch chin to chest shot pain down my spine.

I am back to getting a half tablet of mestinon stuck at the back of my throat again, so I am thinking that the benefits do not outweigh the risks in my case. I go to the plasmapheresis doctor tomorrow, so fingers crossed I can start that again.

Sorry to hear about the pills getting stuck again - that's frustrating i'm sure! I know I always feel more anxiety when I'm not sure if I will accidently choke on a pill or food when my swallowing is weak... not a fun feeling!

Yea... i never try to push it past 100 anymore.. and I couldnt' remember if on the way up to 100 we increased the rate every 15min or 30 usually.. I guess the answer was 30 because now that the tylenol pre med is wearing off I am spiking a temp again - man.. it's weird how sensitive I am.. seems like everyone else in the infusion center always goes at full speed (210).. I didnt let them increase it that quickly the 2nd ramp up - we waited 30 min... just 15 min apparently makes a big difference - who knew! I'm always learning with this stuff!

Good luck tomorrow! I hope they get you all set up and quickly to do plasmapheresis!!! glad it has less side effects for you and works so well! Sure wish there was just a simple magic pill and that's all any of us ever had to do!

I never go over 75 and still sometimes have trouble. I know of one person who never goes over 50. You have to do what works for you and block out those "overachievers" going at 210!:D

I remember a recent post on the subject where the woman said she was given imitrex (migraine med) prior to infusions and it really helps. That might be something to discuss with your doctor.

Feel better soon!

that might be a thought - the immetrex ( i was a migraine sufferer years ago when taking birth control pills- thanklfully none since) the tryptans never helped me though... I just had to suffer through it with motrin and caffine.. I have heard of people doing steriods pre infusion too.. hum...


I know.. Everyone else at the infusion center gets there before me, gets more IVIG than me and is gone before me! I wanna be one of those cool kids!!! I wanna fit in :) My fever has resolved now, but I don't feel great - and the next day is usually worse.. so we'll see! I might have to back it back down to my old rate of 70 :(

Aseptic meningits is more common in folks with a history of migraine. That would be me as well. Steroids have been shown to not be effective in preventing or hastening the resolution of AM, so says my reading.

I feel your pain as I am just recovering from it myself! It's no fun!

Take care and remember that you're a cool kid here!:cool:

Thanks so much!!! Do you get it often too?? It's strange that one infusion I seem to do well, and the next time have more troubles!!

I haven't had the chest pain with the infusion in probably a year - and this last infusion I got the chest pain, headache, neck ache and fever all so fast...and it continues for a day or two - now add in my joints aching like crazy too - a reaction that sometimes occurs, but not often... I hope that means I got an extra good batch of donors so It will work even better!! :)


Funny, well or maybe not... but I was organizing home videos today.. and came across one that had a few seconds of me in it (i'm usually the one behind the camera).. from 2 years ago.. i was horrified- looked like my face was melted off and paralyzed - my eyes were SOOO droopy, face looked funny and everything.. not a pretty sight, but with a not confirmed diagnosis and my fear of other things, it made me feel good to see that - How could that not be something like LEMs or MG? Wish I could try mestinon!!

and thanks for making me feel accepted when I cant hang with my infusion peeps! :)

I am an every 3 weeker. I too notice differences time to time. Unfortunately, last week's not only gave me AM, but now I have diplopia again and certainly do not feel "better than ever.". Hoping it clears soon as I am headed to Vegas for a quick vacay and don't want to be a wet greasy spot on the blazing hot sidewalk!

Sorry about the "horror" video! I have some of them myself and avoided photos for a long time. However, after the death of my brother I realized all photos are precious to those left behind and have made sure there have been some for my daughter's sake.

Take care.

SO TRUE!! ever since getting sick and not knowing exactly what I had or what that means for the future with my two kids, I have made a point to be in some pictures and videos..