Just Diagnosed with CIDP, IVIG?

Hi Meadow and welcome. My best advice for the infusion process is to pre-med with Tylenol and Benadryl each day before your infusion and to also drink lots of water before. Those steps will help minimize any possible side affects. Glad you found us, take care and good luck with your infusions.

Jerimy

I am sure you will be able to do some work during the infusions ( I am usually on my computer the whole time during mine every month). You should expect to be pretty tired so I wouldn’t expect to get a whole lot done until you are sure how you react, and how you feel, during and after. Good luck and I hope it works well for you, it sure has for me.

Jerimy

PS-Meadow I am curious if that is your real name, the reason I ask is I went to school with a girl named Meadow which I always thought was such a unique name.

Ahh ok Helen 🙂

I think you will find with most medical related forums that the people with the most issues tend to post the most and stay around. Many people come, post a few times, start doing better and move on. Just like with everything else there are varying degrees of severity among us, also there are several types of CIDP. Don’t get discouraged, ask lots of questions if you need to, we are here to help however we can.

Jerimy

Hi Meadow,
I know that Jeremy suggested premedicating with Tylenol and Benedril, and that may be necessary for you, however, I do not need premedication. So you may not either. I get 3 days of infusions every 4 weeks. Each treatment is done at the out patient dept of the Hosp. and takes about 4 hours. I usually read, work crosswords, watch T V, and they even bring lunch if I am there at noon ! P S. I have a medi port. It is the easiest way to go. God bless you Meadow
Mary Ann

Hi Meadow,

I agree with everything Jerimy has already said. Most important is drink plenty of liquids a day or so before and that day and the day after (I only get IVIG every 28 or 30 days for 1 day, 60 GMs). I don’t usually drink much fluid that is why I am reinforcing this. I feel better if I do. Sometimes I am very tried after. My advice is don’t plan to do much after but hang around the house. I used to plan thing then get very frusrated that I could not or didn’t feel very good doing them. I usually just feel fuzzy headed and have headaches on and off that day and the following one or two days. Not a big deal. Worse feeling was like I had the flu for about 12 hours headache and achy feeling.

Good luck.

Pam K

Hi Meadow,

I also have a port, but I do not recommend one, as you are only starting. I have had some of my infusions at work, but I think that will vary between care givers. Good luck!!!

Another thing you might consider is having a Walkman and play some relaxing music during the procedure. That was very helpful for me during treatments.
Good luck,
Pat

[QUOTE=Meadow]I start IVIG on Tuesday. The company that is administering it called me on Friday to go over everything. They are acually including Benedryl and Tylenol with the meds that will be shipped Monday evening — along with emergency supplies in case of a negative reaction. I’m pretty nervous about this now…[/QUOTE]

I had several IVIG treatments over about 18 months, at a day patient facility where there were usually half a dozen other people getting it as well. Any time someone sticks a needle in you to infuse something there are potential problems, which is why the “emergency supplies” — that is not something to worry about, just one of those appropriate precautions, like having a life jacket on a boat.

Likewise, the common reactions to IVIG — rash (I’ve never had it), headache (had a few times, treated it like any other headache), flu-like symptoms (they go away, the best thing is to rest) and fatigue — are not so much a worry as an inconvenience. If you respond to the IVIG, they will be overshadowed in importance by the difference in strength, energy and feeling that you will experience.

So don’t worry. Think about healing instead.

Meadow,
Welcome To Are Little Group.
I Agree With Everything Said About Premedicating With Tylenol And Benedryl. You Might Also Try Using Caffiene (coffee, Tea, Chocalate) If You Start Getting Headaches From The Ivig. It Worked Great For Me.
Larry

Meadow,

Don’t be nervous, they have us premed just in case, however the most common issue I have ever gotten is a headache or hangover feeling but nothing major. Good luck with the infusion, let us know how it goes for you.

Jerimy

Good luck today :). Sending good thoughts your way.

Jerimy

I used to read magazines, books etc and listen to music during my infusions at the hospital. Since I get mine done at home now I am able to be on the computer and watch tv during it. You should inquire about home infusions and see if that is an option in your case. I am usually pretty wired during the infusion, its after and the next day that I feel so tired. Good luck with your next infusion.

Jerimy