Hi....I am new to board. Was diagnosed with ocular MG in
fall and it has now developed into generalized. I have been on a roller coaster with prednisone for a couple of months. I have been so sick from it that dr decided to switch me to Cellcept. The transition will take six weeks. He also decided to I need an ivig treatment ....five days for four hours. Can anyone tell me what to expect? I have a two little children and I am clueless about what to expect from this treatment, side effects, procedure, etc. thanks!!!

Hi, and welcome. I have read here many times that with IVIg, it helps to be very well hydrated (before and during), to avoid getting a headache. If you do get a headache, ask them to run the IV more slowly.

This disease can be scary, especially when you have little ones to take care of. I hope you will have some help. Please don't hesitate to ask here if you have more questions.

Abby

Hi and welcome to the board you have come to the right place for support and help.
I can give you my experience would IVIG. I have been getting treatments for two years now. I go to an infusion center in Charlotte North Carolina. They can handle 15 patients at one time and have five or six nurses on duty. They have a recliner with TV and DVR plus a snack room. If you go in the morning they provide you with lunch.

My treatments take two hours but I do not react to the treatment as some people do. Abby gave you good advice that you should drink lots of water before treatment and after. Your nurse should monitor you closely on your first treatment as you will learn as time goes on that each of us are different and our treatments are different. Some people have to have premedication and can take up to six hours depending on how they react. The only reaction I have had are a couple of minor headaches.

At my infusion center there are only four or five MG patients. I have only met one and she has since moved to another facility because of insurance issues. These treatments are not cheap. My insurance company was billed last month for $80,000 just for IVIG. I am very fortunate to have excellent insurance and have yet to pay a penny out of pocket. My heart goes out to those that have to pay out-of-pocket or do not have any insurance at all.

Feel free to ask questions and remember there is no such thing as a dumb question. The people on this board are very friendly and very helpful and we are all fighting the same battle. It is not easy but we all find our own way to cope with this crazy disease.
Best to you
Mike

I have had infusion's for 4 years and just recently stopped and hopefully will not need them again. My infusions were also 4 hours and they were easier tolerate than the few times I was infused quicker. I also had blood drawn after all infusions. Not all doctors will order this.

Not all doctors order pretreatment with Benadryl and Tylenol but many people here do pretreat and I believe it is a good thing to do.

scrubbs

I have had IVIG for 3 years every 2 weeks. I am at the infusion center for 6 hours in a private room. I need to bring my own lunch and snacks. I premedicate with benadryl and tylenol. I get tired from the benadryl and usually sleep for about 2 hours but it prevents reactions to the IG. We experimented with various rates until we found the one that I did not get headaches with - a little slower which takes longer but it's worth it. Drink lots of water before , during and after and you will avoid headaches. I am very tired when I get done and usually sleep as soon as I get home most of the night. In the beginning I used to be exhausted the following day but that has gone away. I can't tell you the difference it has made in the way that I feel. Best of luck to you - IVIG is a wonderful treatment.

I agree with all the others - I go to an infusion center with recliners etc.. I bring my own lunch as well.

As far as side effects go - I echo the others -drink lots of water! Females witha past history of migraine headaches are more likely to get the bad headaches from IVIG.. For me rate was extremely important! For the longest time I couldn't go about 70, so it took most of the day to get infused 50 grams.. now the side effects have lessened and I go at 100 (max is usuallly 210 for people who can tolerate it).

I feel a little run down, and get hot and a little achy.. but that's about it now.. then 4 days later its BOOM I feel SOOO much better!! I also have 2 kiddos 3 and under, it's not easy, but I will never forget when I could hold a crayon again and hold my kids again (as It took months of me worsening before I crashed and they gave me IVIG).. it's a miracle drug.. and yes, expensive. Good luck!!!

Thank you all so much. My dr. mentioned the benadryl and tylenol. Still have not gotten the call to schedule it. They will come to my house and do it. I am somewhat concerned about my children witnessing this. Do you just sit still the entire time, or can you move around, etc. It is hard for me to understand exactly what will happen. Appreciate the tip on water, the doctor did not mention that info. Guess they will tell me more when the treatment is actually scheduled. Hoping to start next week

Many Neurologists have a lab within their practice, or refer you to their hospital's Infusion Center. I decided to opt for the hospital Infusion Center for my five day run, and I'm glad that I did. First, while I have great veins, it took them 4-5 sticks each time to get the IV in, and they had their expert RN do it. Had a regular nurse been assigned to my home, I'm not certain he/she would have been able to stick me properly. Then, I did have nasseau, as well as very strong headaches, in spite of the fact that I was pre-medicated, and had super hydrated myself two days leading up to the treatments. Thus, I would recommend you CONSIDERING not doing it at home this first run; but, it's the choice for you and your doctor to make. Another precaution, I would recommend, is that your Neuro instruct whomever what pump pressures he'd like you to be infused at. Some start slow, and ramp up the pressure throughout the infusion, while some others, simply set it at whatever pressure they want, and let it go. The goal is to insure you don't have side effects, and too high of pressures can definitly do that to you.

thanks...This is really my only option. The nurse comes to my house and does it. She/he will stay with me the entire time. Thanks for the heads up on the pump pressure. How long did your headache and nausea last after each treatment???

Keep in mind, the lower the pump pressures, the longer the Infusion takes. What this can also mean, is that the person administering might want it to go faster for their benifit, not necessarily yours. This is why I recommend that the doctor tells them what pump pressures, so that there's no question. Higher pump pressures alone can cause headaches. I had nasseau and headaches for about four days, but in part because of my doctor not writing a prescription that he was supposed to have written for me. But, IVIG headaches are not entirely unusual, or are 'flu like' symptoms. However, feeling almost normal for a few days is certainly worth it! After my first five days, it took about 10 days before I noted any improvement; and that improvement lasted for about three days. The next month, I had IVIG for two consecutive days, and I had improved symptoms for about six days. Now, my new Neurologist is advising me that I'm at high risk with IVIG, because I've previously had a heart attack, and there have been studies of people having heart attacks within two weeks of having IVIG treatments.