I did have similar reactions too. It was easily solved with keeping the ivig at a very slow rate. I can not tolerate a high rate. Since maintaining a slow rate I have not had any reactions for over a year. Also make sure you are well hydrated starting the day before, during and the day after the ivig. This is very common, most of us can not tolerate increased rates on the pump.

Hi Pacific :)

I don't know how much help I can be, but right around my 3 year mark of receiving IVIG (GammaGard) I started having reactions- full body pain, that made my bones feel like they were broken, and overall a feeling much worse than 'Flu-Like' symptoms...these reactions increased, and by the 3rd Infusion, it took me 10 days to recover from the IVIG. Just like you, these reactions occurred despite using Benadryl and a RX antihistamine called Vistaril for pre-meds.

My Immuno RX'd 20mg of Prednisone for the day of Infusion and the 3 days following. I've had 3 Infusions since, and it has worked like a charm...I've had to learn to eat a fair amount of food to avoid GI distress with the Prednisone, and to take it really early in the morning so I can sleep at night, but I no longer have post infusion pain/reactions.

IVIG has tons of possible side effects, it's a blood product, and not all of those side effects are predictable, and just because the label says that you COULD experience Chest Tightness and a faster heart rate does not necessarily mean you SHOULD tolerate them, nor that it is safe for you to have such side effects. The warnings also say anapylaxis is possible, that's why we have epi pens and would most definitely use them if needed.

Chest pain, and a fast heart rate would feel serious to me too, and I would hesitate to try a brand new treatment, without your old standby handy just in case you need it.

Maybe you could try the new pre-med, but have the Prednsone on hand just in case the new antihistamine does not work, at least for your next infusion?

It's hard to have a talk where you question the methods of a highly trained specialist like an Immuno, but in this case, I think it is really important that maybe you have a phone call or a quick consult to address these concerns..
So, I'd really get specific...What exactly is it about this specific antihistamine that is so advantageous and makes your Prednisone unnecessary, how does the active ingredient work similarly to Prednisone? If the occasional use of Prednisone is effective, why why fix something that isn't broken? What is her recommended safety plan should you have chest pain and tightness and accelerated heart rate and the antihistamine is not helping? Should you go to the ER since the Antihistamine does not help, or discontinue the Infusion for the day? Also, should you take the Antihistamine post infusion to help recover from your reactions? Will it reduce pain and flu like feelings so you can return to work/family/ whatever it is you have in your life, because when IVIG is working properly, most people are back on their feet in 1-2 days if that...5 days is way out of normal range.

I've learned that with IVIG, some degree of discomfort can be expected for some folks, but my home health nurse encouraged me to call my Immuno when I started having severe reactions, and we found a way to lessen that discomfort...so while some of us may have some discomfort with IVIG, there are work arounds, and the Infusions need not be torture, or some thing you just have to 'Suck Up" every 3-4 weeks...It's your Immuno's job to make your Infusions as effective and as safe and comfortable as possible, so make sure you ask all the questions you need to until you are satisfied.

All the best,
LuLu

Great response LuLu. I completely agree. I've never done ivig but believe you are right!

Hey, I am familiar with these reactions. I have an underlying heart condition that contributes, but it is terrifying to feel that. We have made several changes to my IVIG since I started to resolve all the issues. Hydration is definitely a factor. I receive IV fluids pre and post infusion which makes a difference especially in my HR. I too only tolerate slow infusion rates. My previous max rate was only 30ml/hour. If my rate exceeded it I had issues fairly quickly. We recently changed my brand from Gammagard and split my infusion between two days. The new brand seemed to be the answer. I tolerated higher rates...up to 50 on this previous infusion and didn't have any reactions that required intervention. I take 60mg prednisone on each infusion day. Hopefully with the new brand and higher rates I can infuse in one day, and hopefully eventually not need prednisone, but there are a lot of factors in how you react. IV fluids may be good, slow your rate...if you have other reactions as well it may be good down the line to assess if that brand is good for you. I hope you start having an easier time. I know it can be scary and frustrating.

Thank you all for your replies.

@Countr, I think rate is definitely a component to the reaction, as it seems to trigger when I transition between 75 and 100 mL/h. None of my immunos have ever suggested that I try a slower rate; something to ask about.

@LuLu I agree with everything you are saying, that is how I lost my second Immuno; she basically gave up on me and discontinued my care because I wouldn't just put up with the cardio reactions and wanted to get to the bottom of it... My primary also thinks that one dose of Prednisone a month should not be a problem, but my new immuno thinks I am going to have adreanal failure; I kind of doubt this; I need to close the loop with my primary because as you say, if it ain't broke, don't fix it.

@Gliderlove, if you don't mind me asking, what formulation did you switch to? I was also concerned that I had an underlying heart issue as that was what all of the literature said, but the doctors have done all of the tests on me up to a contrast heart stress test without finding anything. What tests did they do for you to determine your underlying heart condition?

I have been doing IVIG for about 3 years now and I definitely have the hydration thing down. I drink 2-3 liters of Gatoraide/drinking water plus a few fruit juices during my 8h infusion. It is the only way I have found to avoiding the next day migraine and flu symptoms. When I am healthy I am a gym rat, and I always drink 2L a day or more so I always come well hydrated.

Thanks again for all of your support and ideas. If anyone else has more to add that would be great. It can be scary as hell to have these reactions and frustrating to the point of madness to have the doctor blow it off as nothing or a psychological issue, even after the infusion nurse calls her up and tells her it definitely is not!

Hey Pacific,

I don't really have anything new to add...I am fortunate that I have an Immuno who takes me seriously, but I have had my fair share of Dr's who chalk up my physical ailments to psych problems, and nothing makes me more upset.

I may not be an MD, but I've been living in this body longer than anyone else, and I know when something just isn't right...and regardless of any psych history I may have, I expect to be treated as a medical patient when I book an appointment for a medical problem.

Chest pains, trouble breathing...these don't sound like side effects a CVIDer should have to suffer through if there is a workable treatment...these are fear inducing side effects vs headache and body aches, which suck albeit, but don't make you feel like you are having a heart attack.

Please keep us posted on what happens with the new Immuno and your next Infusion
Best, LuLU

Hey, I am now on Gammunex C. Something about the additives and way it is processed made them believe it would be a better option. So far so good. As far as my heart I have been through a lot of testing to include a right heart catheterization, TEE, bubble study's, and I have echocardiograms done somewhat regularly to monitor any pressure changes throughout my heart and lungs. I occasionally go through halter monitor study's where they trend my heart rate over a select period of time so the doctors can see the changes while I am at home. I would definitely suggest seeing if maintaining a slower rate makes a difference. The flow rate makes or breaks an infusion for me!!

Only had IVIG 3 times and my doctor has me on Gammunex C. I get a horrific headache, and feel like I have the flu for a couple days, other than that I am ok. We now give the Benadryl before IVIG and of course lots of hydration...

Take care everyone..Lots of prayers and HAPPY THOUGHTS...
Cheryl

Thanks again for all of your comments. It really helps to know that others have experienced this kind of reaction and gone on to have successful infusions.