New meds and new therapies...any words of wisdom!!!

imaginegoodthings · 07-07-2012, 10:06 AM

Quote:

Originally Posted by 4-eyes

I've done IVIG every 3 weeks for 12 years. Lots of water for several days is key, and I also take ibuprofen. Also, make sure the nurses don't try to jack up the flow of the IV. IMO, you shouldn't go over 100 ml/hour the first round. Benadryl is also often recommended and I would definitely use it the first time.

If either of you do get the dreaded headache...don't wait around to see how bad it can get, because it can be EXCRUTIATING! Call the nurse/doc immediately and get something for nausea (as that comes with the headache!) and maybe even a prescription pain med. If the headache happens, take meds, drink MORE, and lie down in a dark room if possible.

I'm not meaning to alarm you, but I wish I'd been more prepared when I began 12 years ago. Also, even with taking all the precautions, sometimes you just don't feel good afterward. However, it REALLY can make a big difference as far as symptoms/quality of life goes.

GOOD LUCK!

I posted a few days ago about wanting to begin IVIG therapy my neuro specialist wanted me to have. An hour after that post, I received a phone call saying that my insurance appeal worked and my IVIG treatment is now authorized to begin next week.

So is it best to drink water and take Ibuprofen and Benadryl before the IVIG (like, that morning)? what does the Benadryl help prevent?
Thanks for any advice you can offer--

4-eyes · 07-07-2012, 10:19 AM

Begin hydrating the day before and continue for a few days. Do the pain meds and benadryl 30 min prior to infusing and for 24 hours or so. They will help prevent any side effects/reactions.

If you feel "funny" during the infusion, tell the nurse. She may need to lower the infusion rate. Too fast of an infusion is a major cause of bad reactions!

Good luck!

Icrad1 · 07-07-2012, 11:09 AM

Waiting to hear from nurses to set everything up...I don't worry about the staying hydrated....I drink tons of water...like 100oz or more a day....I will be figuring out the tylenol (hate that stuff it is useless) Can I do Advil or something like that or does it have to be Tylenol?? The Benedryl too....I will ask the nurses about all that stuff.....ahhhhhh trying to learn how to handle my "new" life sucks!!!

4-eyes · 07-07-2012, 11:30 AM

I only use ibuprofen (advil). I agree, Tylenol is useless, and is also very hard on the liver. I wouldn't try the first infusion without benadryl, unless you do a steroid instead....definitely talk to your doctor/infusion nurse.

You will probably find everything is pre-ordered and will be given to you when you arrive. That's what usually happens.

Icrad1 · 07-14-2012, 05:02 AM

It is 5 in the morning....been up for 30 minutes already...I guess nerves getting the better of me, I start IVIG in 8 hours...the "product/medicine" was shipped overnight and should be here by Noon...the nurse said she will be here by 1pm. Oddly (the nurse even said it was odd) the ordering doctor, did NOT order pre-meds (Benadryl/Pain meds)....so I am taking them at home...when should I start the Benadryl and how much...as for pain meds....I used to have Migraines 24/7 for 15 years (they stopped being so bad once I started the Mestinon/other meds for the MG)....so I used to take Fiorinal with Codeine...NUMEROUS times a day...so I figure I will start taking those pills again today...on a more regular basis.

Thanks for the info ahead of time.

Darci

pingpongman · 07-14-2012, 06:34 AM

I know none of us react the same to treatments but I never had any problems with IVIG. I get a pretty fast rate usually in 2 hours. Never got any pre-meds. Once the next day I had minor flu like symptoms and a couple of minor headaches. I have been getting IVIG for a couple of years. It varies depending on my condition. My last one was 24 treatments over 2 months. Now I didn't like that because it took up a lot of my time. Think positive that it's all going to turn out well. Keep us posted on how you do.
Mike

Icrad1 · 07-14-2012, 07:05 AM

Thank you!!!

QUOTE=pingpongman;897381]I know none of us react the same to treatments but I never had any problems with IVIG. I get a pretty fast rate usually in 2 hours. Never got any pre-meds. Once the next day I had minor flu like symptoms and a couple of minor headaches. I have been getting IVIG for a couple of years. It varies depending on my condition. My last one was 24 treatments over 2 months. Now I didn't like that because it took up a lot of my time. Think positive that it's all going to turn out well. Keep us posted on how you do.
Mike[/QUOTE]

4-eyes · 07-14-2012, 08:24 AM

Benadryl 30 min prior to infusion. Sort of when she gets there, as it will take FOREVER for her to do paperwork/set up. 25-50mg (1 or 2 tab) is typical.

I wouldn't risk the first infusion without pre-meds, especially since you are doing it at home. Most everyone does the first in the hospital, just in case there is a more severe reaction (extremely rare). The pre-meds should squelch the chances of that happening.

Good luck.

Icrad1 · 07-14-2012, 09:04 AM

THANK YOU!!!!!! I will keep you all posted as to how it works and if I get/had any side effects.

Nervous as hell...but hoping like hell this works

Quote:

Originally Posted by 4-eyes

Benadryl 30 min prior to infusion. Sort of when she gets there, as it will take FOREVER for her to do paperwork/set up. 25-50mg (1 or 2 tab) is typical.

I wouldn't risk the first infusion without pre-meds, especially since you are doing it at home. Most everyone does the first in the hospital, just in case there is a more severe reaction (extremely rare). The pre-meds should squelch the chances of that happening.

Good luck.

pingpongman · 07-14-2012, 10:12 AM

Oh I was very nervous my first one, so you are normal. After the first one the rest were a piece of cake. Only problem I have is finding a vein in this old body. Usually takes 3-4 sticks. If I'm getting 2-3 treatments in that week they leave the IV in and just wrap it real good then next treatment they just plug in. Have a good book to read or your laptop handy because otherwise it gets boring.
Mike

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