Bad IVIG Reaction

[Kent Moore]

The only reaction I would get from IVIG was an afternoon/evening headache after day one’s infusion. Just an obnoxious headache, really. If I took a couple Tylenol, it would go away. Unfortunately, the IVIG lost its effectiveness with me after about a year or so. They have me on Vyvgart now and it’s working great. Gonna ride the wave as long as I can…

I wonder if you may have coincidentally contracted a bug totally unrelated to the IVIG. I guess you won’t know unless you try it again (just remember the Tylenol ;-). Did they have you take some Tylenol and benedryl BEFORE each infusion? That might help. I guess that’s standard procedure for Kaiser when administering GammaGuard.

I’m sorry that this happened to you. I hope you can get the full protocol next time and that it works for you. When I began a couple years ago, it was wonderful…and I know many folks vouch for its effectiveness after having been on it for years.

Good luck to you.

[Carol Lawson]

I’ve had generalized MG since 2007. During my “loading dose” over several days, I had fierce headaches and body pains, like an unimaginably bad flu —Tylenol took off the edge just a bit. Subsequently, the doses have been lower over 1 or 2 days, and I still do get headaches and feel out of it for a day or two, but the difference in my ability to move, breathe and function with stamina make it worth it. During Covid, there was a pause in my treatment, and because of the gap, I had to do another “loading dose” with the same intensity and terrible flu-like symptoms, and headache, but again settled into just Tylenol for the headaches. I hope you are able to tolerate the treatment and have good results — this treatment has been a life-changer for me, and am immensely grateful. Summer heat is rough, but not as rough as it was before IVIG, when I would lose my ability to walk entirely. The dose lasts 4-5 weeks for me — all patients are different — the “Snowflake Disease” — as I imagine is response to treatment. Hoping you find the right medication and combination to treat your symptoms, hang in there — you can do it.

[Mama]

I had the first five day infusion in the hospital and three more at home. After the third one, some of my labs were lower than the pharmacy was happy with but still in the normal range. My blood pressure was erratic. My neurologist decided to stop the infusions. I had really felt good on them, but trust the judgment of my neurologist.

[Alan Bridle]

I think IVIG response is very personal, i.e. we all differ in most of the details.

I had no negative effects from my first in-hospital infusions (a several-day series after three weeks in an ICU with an exacerbated myasthenia crisis)

I then had a course of outpatient IVIG infusions to which I had no negative reactions at first, and also no noticeable improvements in my MG symptoms, starting with a three-week interval and soon decreasing to a an eight-week interval. My post-infusion tiredness began to increase until it became debilitating, while I could see no major effect on my MG. Between the expense and the lack of obvious benefit, my neurologist and I agreed to stop the infusions, with no noticeable effect.

From reading this forum, I have seen that others have a very different experienve with IVIG and find it beneficial, if not essential.

This seems to be very much NOT a one-size-fits-all procedure. I reckon we each need to find out if it helps or hurts us, and also whether it’s worth the (large) expense of the infusions.

[John]

Dx with MG 2022. IVIG and pyridostigmine protocol monthly. Managing MG pretty well. I receive 1000mg Tylenol at each IVIG. No headaches or pain. I had an allergic reaction once with hives. Apparent cause was something in IVIG since it is from human donors. No reactions since. Topical steroid cleared the body rash up. IVIG has been effective for 2 years now.

[Ann Marie Hetrick]

I have never had any bad reactions to the IVIG infusions. The key I have found is that you need to be well hydrated before you start the infusions. I only get thhem when I have a flare and when I know I am going to start getting them I super hydrate 2 days before with gatorade and while I am getting the infusions also. The nurses told me this the first time I ever got them and I have never had a problem. Good luck with your next infusions. They work wonders for me.

[Barbara E.]

For me, the problem wasn’t the initial monthly IVIg, but increasing issues over time. In addition to having a terrible time finding a usable vein, I started experiencing increased allergetic reactions (hives). So my doctor switched me to weekly subcutaneous Ig (SCIg). The lower weekly dosage was easier to handle and the tiny needles don’t hurt. Plus, I was taught how to do it myself at home, which gives me the freedom to adjust my schedule and travel. There was a learning curve, but I greatly prefer SCIg over IVIg!

[Glen Ackermann]

Thanks to everyone who shared their experiences with IVIG. I did receive Benadryl and Tylenol before each infusion.

[Katherine Collins]

Hi Glen. My first round of IVIG was also 5 days. On the 3rd day I had the same reaction as you! Aspectic meningitis is what the nurses told me. Here’s why:

They ran the infusion rate way too fast. I’m a long day infusion gal. They have to go slow, which takes about 7 hours a day

I didn’t get a bag of saline hydration before each treatment. I do now! Hydration is one of those important steps for me. I get a saline bag plus I drink LOTS of fluid. I even drink a lot in the days after treatment

I was using Optigam which has a carrier ingredient in it my body doesn’t like. I now use Panzega.

I needed a course of prednisone during treatment, along with the Benadryl, Tylenol, and Zofran.

I always follow this routine now (I’m always a 5 day infusion about every 8/10 weeks)

Please start with looking at the rate of infusion! Too fast is too hard on my system anyways! Lower is better!

And REST. For me, a day of infusion = a day of serious recovery (and then some). It’s a hard treatment but is the only thing that works for me ♥️

 

 

 

[Joe]

Holy cow, I get octagam infusions.and it’s a 3.5 hour infusion every 3 weeks.i hope I don’t have the problems that you are having.3.5 hours seems fast 😮. hope you get it worked out.best wishes

[Joanne Gurion]

My IVIG had been a good experience other than causing migraines, which I never had before. I’ve been feeling like I had the flu for a while now. My neurologist’s NP ordered labs drawn. They came back indicating anemia and abnormal kidney function. The labs were repeated 3 times to make sure there was no mistake made with the tests. I saw my PCP who informed me I’d developed stage 3A kidney disease. Since I’d never experienced this before, I began checking my medication info from the pharmacy. I also looked up Gammagard, which I received in my infusions 4 times per month.

I routinely read the information when I take a new drug, but often skim through the material. This time when reading the possible reactions Gammagard could cause, I saw there was a separate paragraph at the end of the information sheets. It said that Gammagard can cause kidney damage.

So, while I’m not sure Gammagard caused my kidney disease, it’s definitely a possibility. I am not diabetic which leaves one predisposed to kidney disease. I remember being asked if I had kidney disease before starting the infusions, but not being informed it can cause it.

Early kidney disease can have no symptoms. I’ve been taking the medication for a few years now. I’m seeing a nephrologist soon to see what can be done. The disease can’t be reversed, but medication can slow or even stop its progression. Meanwhile, I’m discontinuing my infusions.

[Mark Cox]

I’m 64 year old male that started out the same way with the same symptoms from IVIG infusions. Headaches were absolutely the worst that could not be controlled even with prescription meds. I was moved to VYVGART after the second round of IVIG infusion la and have not experienced the same symptoms since. I will say despite the IVIG symptoms, I felt better physically and mentally on IVIG but the side effects you describe were too much to take… Crazy thing, MG patients are like oil and water when I comes to anesthesia. So due to my recent back surgery 2- months ago, I was given an IVIG infusion the day before the surgery and the day after… Tgey felt it would be stronger than my VYVGART??? I’m not sure what caused all my MG symptoms to return via the anesthesia, surgery or the IVIG infusions but the majority of my MG symptoms were triggered for about three weeks after the surgery mostly blurred vision, slurred speech and swallowing. I actually went into the emergency room three weeks after surgery and had some food pushed out of my esophagus. Food had been try to lodge in my esophagus for the first three weeks after surgery. The crazy part is that I did not have any of the original side effects from the IVIG infusions such as the headaches, body aches and chills… Go figure as I think we’re all wired differently and react to our MG infusions differently… Hope that helps a little…

Mark

[Cathie]

Years ago, no problem. Last July,nephrotoxic reaction landed me ihe hospital-doctors saving kidneys.

[Cathie]

Prior to IVIG, kidney values normal. Neurologist indicated IV was cause, no more IV’s. . Now 3A kidney disease. Years ago, no problem, worked great.

[MGisreal]

I’ve been on IVIG for about 4 years now. I drink lots of water and take Tylenol and Benadryl as pre-meds before treatment. I’ve only had chills twice and a slight headache once. My Neurologist cautioned me to drink lots of fluids and take the pre-meds and I have no problems. The times I did I was not sufficiently hydrated. Hope this helps.

[Jonathan]

I had a 2 day of Ivig cycle last week and so far I haven’t seen any Improvement. My left eye is almost completely shut. I don’t know why I was only given 2 days because earlier this year I did 3 days and I had started to see improvement in a little over a week.

[Joe]

I’ve just had my 8th infusion.it take 4 hours.i only get a slight headache after.but while I’m getting the infusion my heart pounds.but it’s ok when it’s done

[Bobbi]

Haven’t had IVIG for a while . Started again last month . Had about the same symptoms you did with the loading dose . So the next one I tried to hydrate more , and they added fluids to run along with the infusion . I also took tylenol and benedryl about an hour before .

Made a huge difference . Good luck .

[Glen Ackermann]

Thanks again to everyone for sharing their experiences with IVIG. I didn’t really have any preparation for what to expect. When I had my IVIG, it was early in the morning, around 8 am. I was not advised to hydrate. They gave me Benadryl and Tylenol. Mornings seem to be when I am most dehydrated. Next time, I will schedule it for the afternoons after I have hydrated myself well. The one thing that I didn’t mention was how much trouble they had with getting a good stick in my hands/arm. On the first day, my plan was to have the port removed so I could try to work. It took several attempts to get a good vein or whatever and the same thing happened the second day. The second day I had them leave the port in. I had nine bruises on my hands and arms from the infusion attempts. The whole experience was one that I am not anxious to repeat, but I think I will be better prepared next time. I will plan on not working during the infusion period and the first port will remain in for the duration.

[Jonathan]

how long did it take for ivig to start working for everyone? My body reacted really well to the infusion I did a few months ago but I was given 3 days. this time i was only given 2 which I don’t understand. I’m really scared that they didnt give me enough and I’ll have to be half blind even longer while i wait for another infusion to be approved

[Refael]

Greetings!

I also experienced really bad feelings after the third day of the treatment, headaches, fever, chills and vomiting, I went to the hospital with a fear of meningitis, they conducted tests and at the end, thank God, they said that the tests show that there is no meningitis, and it was decided to let me go home.

My neurologist said that the treatment was not suitable for me and decided to stop the treatment and not to try again but to switch to other treatments.

[Jonathan]

I’m sorry to hear that. I’ve been jumping through hoops with my insurance. Currently I’m doing one ivig infusion every month. It helps but the only downside is that it starts to wear off towards the end of the month

[Buckeye]

I had IVIG for over a year. Then one month got very bad, thought it was MG flare. Ended up in ER with Pulmonary embolisms. Really dodged a bullet. They said IVIG caused the clots, so no more.Apparently that is one side effect. I miss it because I have never been as good since as I was when I was on it. It wasn’t a silver bullet but I think it did help.

[Lou DeYenno]

SNOWFLAKE?

I have much compasion for you! I started on IvIG (Octagam) (once a month) with a few side effects but I took Tylenol and Benadryl prior and drank lots of fluids. I still had minor headaches and was in a “fog” for a few days evey now and then. Later, My Neuroligist ordered fuids prior and after infusions and that helped a bit. I was also taking prednisone and Mestinone for my treatment. Everything was working well, until it wasn’t. After about 9 months the IvIG stopped working and off to the hospital. The ER where I was taken did not havbe the proer protocols in place (make certain there is a neurology center available wherever you are transported…we though there was, but)

They did the worst thing they could have (high infusion of prednisone) and exererbated the situation…then onto the neurology cente at the right hospital…very long story shortened-

Plasmapheresis for a ten day stretch and was put back on a regiment of prednisone. mestinione and cellcept…recovered after 4 months and now I’m on Ultomiris (every 8 weeks now)and cellcept and down to 5mg prednisone and doin ok…minor side effect are sstill there, mostly subtle headaches, “air hunger”. Going about my daily life and working around the effects.

Keep trying and adjusting…you will find your normal.

May Gos bless you!

 

[Refael]

I had exactly the same experience you went through, on the third day I was rushed to the hospital and there it was decided to stop the treatment I didn’t try to get this treatment again, I did plasma prasis which really helped me in combination with prednisone. I wish you and everyone good health and eternal remission 🙏🏼

[TaylorZimmet]

Hi! About two years ago, I had my only IVIG treatment. During my first infusion, I felt like my limbs were gradually getting heavier. Otherwise, I felt ok. On the second day of infusions, I started to get a rash and started to feel off. The “off” feeling was I had developed a rare side effect (or maybe a reaction) called hemolytic anemia. I ended up hospitalized for a few days as I lost half of my hemoglobin. That being said, IVIG seems to help a lot of people with autoimmune diseases, and I never heard anyone have a reaction like I did.

I hope you feel better.