Reaction to IVIG

General General CIDP Discussion
1

Hi,

I was diagnosed in 2012, got into a rhythm of having Vigam every 12 weeks which would make me feel awful for a week after (extreme migraines, vomiting). I asked my neuro for alternatives and was put on Gamunex. I had it every 3 weeks, then 4, then 5, but always had maybe 1-2 days of feel rough. However, when I got to 6 weeks I had an incredibly strong reaction (for a week), I almost asked to be taken to hospital.

When I asked my neuro what I should do next he said I could stop IVIG until I feel I really need it and that I may have had 'allergic meningitis'-has anyone heard of this??

I am currently plodding along not really knowing what I am supposed to do next.

Has anyone had an extreme reaction and stopped?

2

Hmmm. That is interesting about the different types of IVIG. I have never had anything but Gamunex, but it always worked for me, and I assumed any type of IVIG would be about the same. Maybe not...

It would be interesting to hear if anyone else has had one type of IVIG work better than another type.

Bill

3

By "Allergic Meningitis" he probably meant "Aseptic Meningitis," which is a form of meningitis that is not caused by bacteria or viruses. As far as I know it is far less dangerous, although the symptoms can be just as nasty. Here's the Wikipedia write up on it:

http://en.wikipedia.org/wiki/Aseptic_meningitis

It is a known, but infrequent side effect of some medications, including IVIG. When I first started IVIG a year and a half ago I had a reaction that as far as I'm concerned was aseptic meningitis, although my neuro didn't seem to think much of my auto-diagnosis.

In my case it went down like this:

Loading dose of IVIG on Tuesday, Wednesday, and Thursday. Felt like a million bucks by the end of the day Thursday.

On Friday I was feeling a bit odd and restless by end of day. Headache started early evening and by 10:00 PM it was excruciating. (I was literally squirming in my seat.) Ibuprofen did nothing. Went to bed and slept badly.

Next day (Saturday) I could barely function. Spent most of the day in bed. Couldn't eat. Very stiff neck, and felt like my brain was in a clamp. No appetite at all. Food was repulsive. I felt like I wanted to vomit, but my stomach was empty. Started taking a cocktail of Tylenol, Naproxen, and Benadryl, which helped a bit (the Naproxen was the most effective.) I could hardly move all day. Couldn't stand any sound.

Slept reasonably well Saturday night, under the circumstances. Felt a bit better Sunday, and continued taking the 3-drug cocktail. Appetite returned, and neck stiffness was greatly reduced. By Sunday evening I felt a lot better (5/10, whereas Saturday was 9/10 on the pain scale). Stopped taking the Benadryl, but took two Tylenol PMs before bed. Unfortunately the headache and stiff neck got a bit worse and I slept very badly.

Monday: got up early feeling rotten (stiff neck and headache). Naproxen helped. By mid-morning the pain was down to about 3/10, but I felt dizzy (the same dizzy you get from taking Benadryl -- except I wasn't taking Benadryl). By Tuesday I was able to function pretty normally (went to work, etc.) and by Wednesday all symptoms were gone. Fortunately they never came back.

4

From what I’ve read, 17% of people who get IVIG get aseptic menengitis. I’m One of em. I’ve been trying to find a solution for over a decade, and have tried several things. Here are some of them: I’ve had most of the different types of IVIG and pre-medicated with solumedrol, solucortif, benedryl, indomethacin, and all regular over the counter antiinflamatories. post medication with any painkiller I can get my hands on, such as gabapentin, codine, morphine, oxy but they don’t really help they only screw up your digestive system. The only thing that kinda helps is indocid ( an NSAID) and a week of doing nothing. I’ve lost well over a year of my life in recovery from IVIG, spent mostly screaming in agony but hey! At least I can walk! I don’t always have the severe reaction, but it’s never good. My advice if you get a bad one is to keep your blood pressure low! Avoid physical activities and excitement. Laughing or arguing can even set me off. Keep ice handy for when your brain stem swells up and neck gets rigid. Try not to tear your eyes out. Good luck.

5


My reaction was identical to yours! My neuro now gives me a pre drug at the time of IVIG to prevent migraines. I also have a migraine med and nauseau med to take the day after infusion. They also slowed down the rate. It worked! Only a mild headache and body aches similar to the flu.


Tingle said:

By "Allergic Meningitis" he probably meant "Aseptic Meningitis," which is a form of meningitis that is not caused by bacteria or viruses. As far as I know it is far less dangerous, although the symptoms can be just as nasty. Here's the Wikipedia write up on it:

http://en.wikipedia.org/wiki/Aseptic_meningitis

It is a known, but infrequent side effect of some medications, including IVIG. When I first started IVIG a year and a half ago I had a reaction that as far as I'm concerned was aseptic meningitis, although my neuro didn't seem to think much of my auto-diagnosis.

In my case it went down like this:

Loading dose of IVIG on Tuesday, Wednesday, and Thursday. Felt like a million bucks by the end of the day Thursday.

On Friday I was feeling a bit odd and restless by end of day. Headache started early evening and by 10:00 PM it was excruciating. (I was literally squirming in my seat.) Ibuprofen did nothing. Went to bed and slept badly.

Next day (Saturday) I could barely function. Spent most of the day in bed. Couldn't eat. Very stiff neck, and felt like my brain was in a clamp. No appetite at all. Food was repulsive. I felt like I wanted to vomit, but my stomach was empty. Started taking a cocktail of Tylenol, Naproxen, and Benadryl, which helped a bit (the Naproxen was the most effective.) I could hardly move all day. Couldn't stand any sound.

Slept reasonably well Saturday night, under the circumstances. Felt a bit better Sunday, and continued taking the 3-drug cocktail. Appetite returned, and neck stiffness was greatly reduced. By Sunday evening I felt a lot better (5/10, whereas Saturday was 9/10 on the pain scale). Stopped taking the Benadryl, but took two Tylenol PMs before bed. Unfortunately the headache and stiff neck got a bit worse and I slept very badly.

Monday: got up early feeling rotten (stiff neck and headache). Naproxen helped. By mid-morning the pain was down to about 3/10, but I felt dizzy (the same dizzy you get from taking Benadryl -- except I wasn't taking Benadryl). By Tuesday I was able to function pretty normally (went to work, etc.) and by Wednesday all symptoms were gone. Fortunately they never came back.

6

Wow, Greg, that's awful. I think if I had a repeat of my reaction on a regular basis I'd probably stop the treatments!

In my case I was advised to stay very well hydrated, so I drink about a litre of water during my infusions. Also, they changed my IVIG product from Privigen to Gamunex, but that was months later (after the Privigen seemed to be giving me a rash).

Hang in there!

7

Fitgirl, I'm lucky in that it only happened once, right after the loading dose. I was on Solumedrol too, but I've been weaned off of that over the past four months with no bad effects (and the good effect of me having way fewer headaches -- Solumedrol can cause fluid retention and even mild brain swelling).

Generally speaking I seem to tolerate the IVIG really well. I feel best in the two or three days after my infusions.

8

My daughter is 14yo and gets what her neuro calls “meningitis type headaches” after ivig. She now takes a steroid the day before, day of and day after ivig. They’ve also slowed the rate right down and she drinks lots of water during this time. She has been having ivig for 2 years and has experienced this often but it looks like it’s under control now. Hope they manage to sort it out for you, it’s not a very pleasant experience. Good luck.

9

Check the product information on your IVIG. The product I get (kiovig) states that AMS (Aseptic Meningitis Syndrome) may occur more frequently in association with high dose (2 g/kg) IGIV treatment.

Interestingly, I see you were on a 12 week schedule which I think is rather long as the half life of IVIG (certainly my product) is quite a bit less than that. My product has a median half life of 30 days but that is apparently quite variable between patients and dose is judged on response. So - in order for you to maintain adequate response I would think you were getting a very high occasional dose - ergo - immediately I suspect that you are a prime candidate for AMS and your experience indicates that is exactly what is happening.

Reaction to IVIG is not uncommon but usually passes fairly quickly and while it may be quite uncomfortable to some, is generally not life threatening. Some people take pre-meds and others just put up with it. The short term reaction is worth it considering the alternative.

Bottom line - If you are getting severe reactions like AMS you should try a lower, more frequent treatment dose of IVIG and your neuro should know this. Alternatively, for people getting frequent small doses (like under 4 weeks), if that is a pain you should ask for higher, less frequent doses provided you don't hit that AMS barrier. I do get the impression that a 4 week dose is a happy medium for most. The only exception here is the loading dose period (that week when you start the IVIG treatment). Not a lot you can do about high doses then as it just has to be done.

See here for information on Vigam. They refer to "reversible aseptic meningitis". You will see it has a half life of 20-25 days (variable for patients) and a RECOMMENDED frequency of 3 or 4 weeks. I rest my case!

10

I get IVIG every 4 weeks and was getting those migraines as well. They ended up slowing mine way down. It takes 6-7 hours for my infusions now but I do not get the headaches and vomiting anymore! They also give me Benedryl and Tylenol before each infusion. I also get a small bag of fluids before each infusion and drink lots of water.

Sounds like they need to slow yours down. I also have been told that some people have to switch to IVIG products that don’t have any sugar in them because that affects them with headaches. Something to think about anyway.

Good luck!

11

I get GammunexC. I receive 150Gm divided over three days, then repeated every month. Each infusion last anywhere from 3hr. To 5hr. I start at 60mm/hr. Then gradually increased to 220cc/hr. I hydrate with Zero days ahead of time and all through the treatment and after. I dose with Benadryl and Tylenol the day before and the day of the infusion. I got some dull neck ache initially but none since. Ig with dextrose causes far more of the meningetic symptoms especially the neck stuff.
BTW: the effects of the infusion last about 10-20 days. Then I tough it out from there. It’s not too bad. Just hang in there and vent here!

12

I have been on IVIG for almost 4 years. I used to take Tylenol, benedryl and an anti nausea pill prior to the infusion but I no longer need it.(yippee!) I can't stress enough the importance of drinking a ton of water the day prior to the infusion, day of and day after.(I was told 64oz) It is also important to rest after the infusion. I had viral meningitis a few months before my cidp dx and it was horrible, fever, headache unable to move. I am so sorry you go through that, keep searching for answers. peace

13

It's interesting to read about infusion rates. I get 60 g every two weeks. (Three 20 g bottles.) They start me off at 50 cc/hr and move up to 100 after 30 minutes or so, then to 150 max, because I was getting headachey if it went over 160. (I'm assuming it's cc/hr; I mostly just know it as "50/100/150".)

It takes about four and a half hours to get the full dose. I generally just read, sometimes I work a bit. It's actually not the worst thing because the people at the clinic are friendly (nurses and other patients) and the location is convenient. I take it as sort of a "me day" where I relax and take time for myself.

I'm lucky in that I work as a freelancer, so I have a lot of control over my schedule. My main customer (who I essentially work full time for, but on a contract basis) knows, and doesn't object to me taking two work days off a month because I don't bill them for the time. :-)

Most times I meet my wife at a nearby café afterwards and we try to do something fun with the afternoon. I'm really grateful that my CIDP is -- so far -- under control and not debilitating.

14

I’ve tried slow infusion rates and extreme hydration. I’ve also (13yrs ago)showed up fresh off an epic bender without having slept and still tipsy, also just generally hungover a few times. None of it made a difference for me but I try to stay hydrated anyway. The nurses love me… Haha it took a decade of bringing them cupcakes and doughnuts to win them over.

15

I get all over cramps/body aches & headaches after IVIG for a few days. My doctor recently gave me Cambia which is a powder that tastes like peppermint altoids that you mix into a few ounces of water and drink down and it works in 20 minutes and literally dissolves my headaches. I also have a Rx for a nasal spray called Sprix, but I haven't tried it yet. When I last saw my neuro, he said that it sounded like I was having aseptic meningitis and also called it reactive meningitis. He told me to try the cambia and if I didn't perk up in a few hours to proceed to the ER, but 25 mins later, I felt pretty good so I don't know if it was really meningitis OR just the regular headaches that I get post IVIG. With my first IVIG infusion, I had a reaction to it called acquired methemoglobinemia which symptoms include:

  • Bluish coloring of the skin
  • Headache
  • Fatigue
  • Shortness of breath
  • Lack of energy

They stopped my infusion, put me on oxygen and a heart monitor and pushed meds through my IV and let me rest for an hour before starting it up again at a much slower rate. It was so bad that my neuro didn't want to give me a second round, but I begged him b/c I could tell it really helped a lot and agreed to let me try it one more time and I've been doing it ever since without much problems. Now my IVIG is started out at 30cc and by the time I am done, it is at 240cc, but if I get symptomatic, the slow the rate back a bit.

I've read that some people will get prednisone at the same time as their IVIG to help suppress the body's reaction to it and it also helps with CIDP. Perhaps you should inquire with your doctor about that.

16

My husband developed Aseptic Meningitis after his one and only IVIG treatment. He was hospitalized and VERY sick for 3 weeks. Due to the severe reaction his Neuro will no longer treat with IVIG. Neuro also has unfortunately ruled out plasmapherisis. I hope all works out for you and your neuro can offer more options. Don't give up! ox

17

I would add that I am on the 4 week schedule and occasionally get mild headaches and nausea no matters if the infusion is fast or slow or how much the before and after flush and after more than two years I still can't really tag any association.

Two things do appear to help - so they are part of my routine and I do think I now have less issues than early on. First - they bring coffee and small snacks - one set for each 200ml bottle (I have a great place to get infusions). Second - get busy after the infusion (takes your mind off it).

Tinapet said:

I get IVIG every 4 weeks and was getting those migraines as well. They ended up slowing mine way down. It takes 6-7 hours for my infusions now but I do not get the headaches and vomiting anymore! They also give me Benedryl and Tylenol before each infusion. I also get a small bag of fluids before each infusion and drink lots of water.

Sounds like they need to slow yours down. I also have been told that some people have to switch to IVIG products that don't have any sugar in them because that affects them with headaches. Something to think about anyway.

Good luck!
18

I hope the doc reconsiders the IVIg! Most initially reactions though severe don’t necessarily recur and if they do, they t nd to be less severe so that over time the Ig is well tolerated. Of course, it should be a joint decision between the Dr. And your husband.



bonnie said:

My husband developed Aseptic Meningitis after his one and only IVIG treatment. He was hospitalized and VERY sick for 3 weeks. Due to the severe reaction his Neuro will no longer treat with IVIG. Neuro also has unfortunately ruled out plasmapherisis. I hope all works out for you and your neuro can offer more options. Don’t give up! ox

19

hi! I know just how you feel!,…ask for the infusion to be put through slower!.. that’s what I had done and I am fine now…just slight headache but it’s nothing compared to the sickness and severe headache I was getting… ;o)

20

Thank you but I had to cancel the future IVIg infusions till I am cleared by a Cardiologist b/c of continued high BP, only since the IVIg 11 days ago. Kidney? Some syndrome or other? Will post progress.



annette hunt said:

hi! I know just how you feel!,…ask for the infusion to be put through slower!.. that’s what I had done and I am fine now…just slight headache but it’s nothing compared to the sickness and severe headache I was getting… ;o)