First IVIG

I just returned from my Neurologist, and he is going to to 5 IVIG's in a row next week. Dont really know what to expect, Any suggestions? Thanks. Bill

Some people take premeds before IVIG infusions to reduce side affects. I take 25 mg Benadryl and 2 regular strength Tylenol. In my case, I haven’t really experienced any side affects. It takes me about 3-5 days after treatment to begin feeling my strength returning. My infusions take about 3.5 hours but it can vary widely between people so take a book to read.

My infusion lasts 14 hours,me very 21 days. I hydrate myself very well the day before and morning of the infusion. I get a phenegren tablet and a Tylenol 3 thirty minutes before the infusion. I sleep through the night, oblivious to the nurses until about halfway through when I go to the restroom and get more phone green. Then I sleep through the rest and all the way home (2hours) I drink a lot the next few days to keep hydrated. My side effects depend on the brand they use. Privigen is the best for me, but not always available. Then they resort to Octogam, which give me flulike symptoms for a few days.

Hi Bill,

I am one of those who pre-medicate and it has meant the world of difference for me. I had a history of migraines, and after the second day of the five-day loading dose I developed a reaction called "aseptic meningitis" which is rare but very severe. I had a stiff neck, high temp, and vomiting. They stopped the rest of the infusions that week and restarted the next week adding 500cc of saline at the start of the infusion with 25mg of benadryl, two-325mg Tylenol tabs, and 80mg Solumedrol IV prior to the start of the infusion. After the first 500cc of saline stops then another 500cc is started up and runs after the IVIG infusion is finished. I also get another 80mg of Solumedrol post infusion. The total time of IVIG infusion is about 3.5 hours, but with the added saline, it puts it to about 6 hours total. Since they added the extra meds and fluids, I have only had minor headaches post infusion. I do suggest that you drink plenty of water during and post infusions. The solution is very viscous and the water intake helps to prevent other adverse side effects.

Good luck to you. I hope you don't have any side effects. From what I understand, many people do not have the headache issues--that really has been my only problem with getting the infusions--besides the time it takes out of my work schedule. I now get infusions two times every three weeks in the same manner as above which can be very inconvenient at times. .

Drink lots and lots of water. Relax after the second day I got a headache they slowed the infusion rate down . So loading up o the water and continuing to is good I also took a strong starbuck with me. They will give you something there if the headache is to bad. : ) just don’t stress I had my loading dose and I get one every Friday for the next 9 weeks. ; )

My husband drinks lots of water at least 3-4 days before. The morning of his infusion he premedicates
with Tylenol at the hospital they give him IV benedryl then starts his infusion very slow,
The first few times he developed a severe headache and rash, subsequently now he is given ivig that is for allergic patients and a very slow rate 100 rate takes around 7 hrs.
When he is finished he takes Tylenol and benedryl for a few days in the night to lessen reactions.
So far so good it does take him about 5 days to regain his strength but it does return.
Good luck!

My husband drinks lots of water at least 3-4 days before. The morning of his infusion he premedicates
with Tylenol at the hospital they give him IV benedryl then starts his infusion very slow,
The first few times he developed a severe headache and rash, subsequently now he is given ivig that is for allergic patients and a very slow rate 100 rate takes around 7 hrs.
When he is finished he takes Tylenol and benedryl for a few days in the night to lessen reactions.
So far so good it does take him about 5 days to regain his strength but it does return.
Good luck!

Definitely drink lots of water a few days before and during the treatment. Let them know if you get a headache. Even if it’s a very slight one so they can slow down the rate. The headache that comes with too fast of an infusion rate is terrible. Other than that after a few months you will feel like a totally new person! Take care!

My experience is that I begin hydrating two days before my infusion. I take two 500 mg Tylenol one hour before the infusion and drink lots of water during the infusion. After my three hour infusion, I do my best to rest awhile. Be sure you exercise some each day and get plenty or rest each night. This will help your CIDP. This is my take on it.

I started with the 5 day (2 x 200ml Kiovig loading dose) system - then every 4 weeks and that was almost two years ago.

It is likely that you are physically at a low point now so it might be a bit of a hit. I know that by day 5 that was me! Day 5 almost did not happen as I had developed a temperature.

Some people have side effects. I do. Headache and nausea - but generally not too bad - nothing that a paracetamol can not fix if needed.

Some people advocate lots of fluid before - but remember you will be sitting in that chair for about two hours.... so too much fluid has its problems. Personally I do day before and breakfast as normal then no extra fluids (at all) and take a last second pit stop before. Preparation!

BUT - I do think that some extra fluid during helps, as does limited food.

After - just get busy - distraction and activity is the best medicine and for me the side effects are gone in a few hours.

You will find that the staff will keep a close eye on you AND go slow with the infusion for the first few days. My last infusion was almost like pouring it in with a bucket! Quite fast.
It may be worth looking up adverse effects for IVIg so you are aware of the possibilities and alert you doc if any serious ones develop - BUT - just remember that IVIg is one of the safest treatments around and serious adverse effects are quite rare. The usual adverse effects are more inconvenient than problems so you will probably sail through and (like me) think the worst adverse effect is someone sticking you with a needle!!!!

Premed s make it easier on your body. I call it recovery juice and tell my guy to welcome it into his body and help it do its job with dreams of what his recovery will look like.

Hi, my his first IVIG treatment was the worst I had. I handled the first day just fine, but about 2 hours later I started getting a severe headache. the headache and nausea continued into the second day. about half way in to my second days treatment they had to stop it because I was so sick…head pounding, nausea, vomiting, high blood pressure, etc. since then I have gotten an 8 hr infusion every four weeks for the past 18 months. Except for some headaches, I have done well. I premeditate with Tylenol, benadryl, and zofran. I drink lots of fluids the day before, day of, and day after the infusion… also, I always take some pretzels along to munch on…salt seems to help my nausea. Good luck…Be sure to rest the day of and day after infusions.

The IVIG treatments made me want to sleep allot. Make sure they do it slowly. I ended up in the emergency room because the nurse was in a hurry. Also, make sure they take your blood pressure continuously, drink a lot of water, and take a Benadryl before the treatment. I’ve been taking them for a year and a half. For some reason the nurses want to be in a hurry. It should take at least 4 hours.

I was one of the lucky ones who never needed to pre-medicate. Drink lots of water before, during and after. Once after finishing my infusion, I went out and had a milkshake instead of more water. A headache came on quickly and Tylenol or Advil didn’t hardly touch it. As soon as I resumed pushing water and viola! The Headache Disappeared!

For my very first IVIG I was admitted for those 5 days and ended up having a pic line inserted as it did not want to flow through the veins in my arms as it was too thick. Each bottle took 12 hrs with continuous vital monitoring and temperature checks. A couple of time my blood pressure dropped very low in the evening after the days treatment had ended. They did however take great care of me and I had a private room.

My hubby had to travel to Brisbane for his and we stayed in a motel for the 5 nights he did get a headache on one night but drink lots of water xx

It will be pretty easy. Trust those who are present. Take a good book and enjoy it or nap during. In about a week, you will start to notice improvements. Let us know how you do. Best of luck to you!

Hi Bill,

I usually feel run down for a few days post IVIg. Kind of like how you feel when you have the flu. I feel hot, achy and my feet feel puffy (even though they don't look like it). I also get really bad migraines. The best way I found to lessen or control these side effects for me has been to premed with Tylenol and Benadryl. Drink LOTS of water (start the day before your treatment and continue through your treatment until a day or two post treatment. Take Tylenol or Motrin as needed. Keep ice packs on hand. If the migraines get really bad, you can ask your doctor to Rx something. Also, if you have nausea you can ask him/her to put you on an anti-nauseant.

Black coffee also seems to help my IVIg migraines (the migraines are called aseptic meningitis.)

You at where I was 7 years ago.It took a good soaking in IVIG like you,and then 2 monthly top ups before I started to feel some recovery from the condition.76 treatments later and still going strong.One chap with another rare disorder has been on it for 13 years.Once it is shown to be effective,it remains effective-so far at least.

Drink plenty of water,expect a bit of a headache and sleep.

Thinking back,things were so bad any and all of the bad parts of IVIG are nothing compared to being ill with CIDP.

I wish you all the best.

My first IVIG set of treatmesnts were also 5 days in a row and I was a bit nervous but they went extremely well without side effects, like headahces (very commmon) or nausea. I am down to 2 treatments every 6 weeks after the iintial set of 5. I get liquid Benadryl & Tylenol first which makes me sleepy so I do sleep thru quite a bit of my 4 hour + treatment. I listen to my iPop and read a book, The Infusion Suite at my Med Center also has two TV's for those who prefer video entertainment. All in all, it was nothing to be nervous or afraid in my experiences. I do feel a little tired when I am finished but not too drowsy to drive myself. I even go back to work for a few hours, on most occasions. Good Luck. I know they will help and you should see some improvement right away.