NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   Does your neuro make you take Benadryl before IV IG? (https://www.neurotalk.org/myasthenia-gravis/60113-neuro-benadryl-iv-ig.html)

erinhermes 11-19-2008 01:40 PM

Does your neuro make you take Benadryl before IV IG?
 
Hello all!

Feeling hung over today due to the Benadryl that I HAVE to have b/4 IV IG and was wondering if you had to take it as well................

Benadryl really knocks me out! I cannot stand that feeling! I'm hoping for a reprieve tonight................I just lie around in a daze the next day......weird!!!

Erin

Gabe 11-20-2008 09:58 AM

I think they give everyone Benadryl and Tyleonol prior to IVIG to prevent allergic reactions. You need to just lay low the day after IVIG anyway - it is a lot for your body to adjust to. The most important thing is to drink alot of water the day before IVIG, the day of and the day after - your kidneys will thank you!
Gabe

erinhermes 11-20-2008 11:15 AM

Last night was MUCh better!
 
I asked the nurse to please reduce my Benadryl, so I only had half my usual and felt great! No more exhaustion! It was FABULOUS!!!!!!

Thanks!
Erin

redtail 11-20-2008 09:08 PM

Wow, every time I read about everyones IVIG, I consider myself lucky. I have never had any problems with it, I have only had 4, but still the only problem was with the last one, I had a migrane, but I quite sure that was due to my back being out. I make sure I drink lots the day before and also on the day, as I only now have it for one day, this last one was 69g. Hope things are ok with you Erin.

erinhermes 11-22-2008 09:35 PM

Finally DONE with my IV IG...........
 
:hug:Last night was my last round of IV IG - YAY! Every time I have to go in, I have to go in daily for another 400 ml. of that liquid gold!!!!:D

This one kinda knocked me out, but I just KNOW that I'll be up and around by tomorrow and feel like my old self within the next couple of weeks!:D

It was so funny, cuz you know how I flip out about PICC lines and Liz, the nurse cam ein to take it out and informed me that this was her forst time! Talk about nervous! My blood pressure went up to 134/70 (it's usually 110/70 or so), but it went great! We "bribed" the nurses all week with food and they were so sweet! I even had the nice room for my 4-6 hr nightly stay! Mike and I are going to send them flowers next week!

It has been nice and COOL here (high of 58 today)..........I love it when it's like this!!! I am going to start decorating my home next week for my hubby's yearly x-mas party. I just love how pretty the house looks when it's decorated! I know I'm doing it early, but I figure this will give me time in case I start to feel crappy again!

Ah, the Holidays! My favorite time of year!

Happy Turkey day all!
:hug:Erin:hug:

littlekitten 11-24-2008 06:11 PM

We sure do things different in Canada.

My IVIG's are done in the outpatient part of the hospital during regular 8 am - 4 pm hours. There is a big room and people get various antibiotics, blood, etc. It's like musical chairs in that room some days.

Yet, everybody has a story and it's always interesting to chat with them and hear what they have, and their symptoms, and how they were diagnosed and how they try to continue to live normal lives.

IVIG is given quite a bit for a variety of different conditions here - and the amounts vary quite a bit as well. Not only based on weight, but depending what you have too. I'm the only MG'er. As far as I've seen with the 20 or 30 different people getting IVIG, only 2 have ever had to have benedryl.

Most say they experience 'flu' type symptoms for a couple of days - ie, tired, low energy, etc...sometimes headaches (due to lack of fluids), and then they perk right up.

So to hear that you go in for the evening and have your own room.....not up here.....

Lydia

erinhermes 11-24-2008 10:50 PM

Canada has the right idea!!!
 
That sounds wonderful to me! The hospital really creeps me out! I know I have to be there, but it still scares the bejeebies out of me!:(

Granted, it is a great hosp, but I'd much rather be @ home (who wouldn't?) and just relax!!!

I did feel yucky this weekend, but woke up feeling great! I have had tons of fluids today and just feel great!!!!!:D

Take care!
Erin:D

neutro 11-25-2008 04:25 AM

Hi all,
Here is the french way…
IVIG are performed during hospitalization, 3x200ml bottles/flasks per day (maybe 4/day if the injection speed has been increased in the absence of headaches), total stay at the hospital: 5 (or 4)days.
The cure normally consists of 15 (or 14?) bottles/flasks.
Paracetamol is given for headaches.
For your information, one flask costs 650 US$, so the cure costs 9750 US$ +hospital costs (totally covered by the State Social Security).
Maurice.

erinhermes 11-25-2008 06:11 PM

Hello Maurice!
 
Hey Maurice!

Here in SA, Texas, they give ME 400 Ml @ a time - 5 days in a row.

Once the PICC line is in place, it is SMOOTH sailing all the way...........:D

The best part is my headaches are now gone and my eyes look like they've had a "lift"..........:rolleyes:

The cost per bottle is $10,000 us - I've had , to date, over $200,000 in IV IG, which is a joke, considering they get the IV IG through the red cross.......

On the positive side, I was able to get all of this done on an outpatient basis!!!

How are you doing today? Are you feeling OK?

Take care!
:hug:Erin:hug:

Quote:

Originally Posted by neutro (Post 413991)
Hi all,
Here is the french way…
IVIG are performed during hospitalization, 3x200ml bottles/flasks per day (maybe 4/day if the injection speed has been increased in the absence of headaches), total stay at the hospital: 5 (or 4)days.
The cure normally consists of 15 (or 14?) bottles/flasks.
Paracetamol is given for headaches.
For your information, one flask costs 650 US$, so the cure costs 9750 US$ +hospital costs (totally covered by the State Social Security).
Maurice.


MissyGirl 11-25-2008 07:37 PM

I'm in Texas, too. I do IVIG at home, alone. Access my own chest port and do the infusion while surfing the net, watching TV, etc.

Erin, I assume you are using Carimmune? In any case, that is way overpriced. You'll hit your insurance ceiling in no time at that rate. Better seek out home infusion or infusions in an infusion center. The hospital based will get you in the end.

Missy


All times are GMT -5. The time now is 08:15 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.