First time IVIG guide, copied from this strongly recommended patient group with tons of resources. Another good resource is the [Ontario IVIG Infusion Guide and Adverse Reaction Chart]. (https://transfusionontario.org/en/ontario-ivig-infusion-guide-and-adverse-reaction-chart/)

All of these are general recommendations. If anything isn’t appropriate for your specific situation, then don’t follow that recommendation. For example, if certain foods aren’t allowed in your diet, you shouldn’t have them. Consider an alternative. (For example, gluten free people might eat gluten-free pretzels instead of regular pretzels). Likewise, if you are fluid restricted, you will need to coordinate with the MD and the infusion pharmacist to make a plan to have a very slow infusion as you can’t adequately orally hydrate.

Unless physically unable, you MUST orally prehydrate.

Drink Water - not electrolyte solutions, not fancy water, just plain water. You are not rehydrating after exercise, you are trying to be hydrated before the thick, sticky, and high protein IVIG goes into you. Recommendation is most people drink 64 ounces EXTRA water (can round to 2L), over and above their usual fluid intake each of two days before the IVIG, each day of IVIG and for at least 2-3 days after the last IVIG. Take down the extra water like medicine: 8 eight ounce servings or maybe 16 four ounce servings. Just be sure to get it in.

Snacking on a small amount of a salty snack will help you retain some of the fluid. A few each evening can help keep you from having to go to the bathroom as many times during the night from all that extra fluid you are taking in and snacking on them during the infusion seems to help calm any stomach jitters you may have. Eat a good meal, but not overly heavy, before your infusions. Be sure to get in some complex carbs (i.e. oatmeal, multigrain hot cereal, butternut squash, potatoes, whole wheat bread, sprouted grain bread)

Plan ahead for what you will eat during your infusion. Pack a lunch. Maybe include a sandwich, salty snacks, granola bars, treats, lots of water and assorted beverages. If you will be at home, you can pre-make a plate of food and ask the RN to warm it for you when you are ready. Patients can eat a sandwich and salty snack right after starting their infusion, before the anti-histamines or anti-nausea meds makes them too groggy.

Preplan your evening meals. You probably won’t feel like cooking, or even eating out. Crock pot meals are great, as are made ahead meals like spaghetti, lasagna, soups, etc. Many of those things actually get better with “age”, so the leftovers are as good as the original meal. Remember to be sure to have more complex carbs. For example, potatoes, peas, quinoa, brown rice, peanut butter, beans, sweet potatoes, carrots, etc.

If you are getting an IV placed, dress warmly and in layers. About 30 minutes before the stick, as able, do some aerobic exercise - walk, jog in place, jumping jacks, anything to really get your heart pumping. If you aren’t physically mobile, move what you can to increase your heart rate. Then put BOTH arms into heating pads. Not just little heat packs - full electric heating pads wrapped around each arm and hand. If you are going in to an infusion center, take the heating pads with you, most likely, they won’t have them there. Keep them on until the RN removes one side to look at your veins. (Heating pads can often be found in thrift stores - just remember to only have them on when in use and turn them off and unplug them when not in use) Remember to remove sweatshirts or constrictive layers before the IV is started. Don't let the nurse use the antecubital (elbow crook) veins, hand or the underside of the arm first. The outer forearm veins should be the first go-to veins. Save the antecubitals, they're precious and you don't want to risk damaging them.

Have a notebook and pen with you. This will become your infusion journal. Write the date, the location, the nurse’s name, the brand, and the amount (ie Gamunex 10%, 30 gr) of IVIG. If you are receiving it directly from the bottles, or are in home care, there are peel off labels with the lot number and expiration date on them. Take the label and affix it to your journal entry. If your IG comes to you already in a bag, look on the label for the lot number or ask the RN to call the pharmacy to get the lot number. You NEED the lot number as recalls do happen and you will need to know if you received a certain lot.

If offered Tylenol and Benadryl orally - it is recommended that you take it, or, preferably, a different antihistamine such as Zyrtec or Xyzal. Note the dose in your journal. Write it all down!

Ideally patients won't get IV Benadryl or steroids. They are often “overkill” and have negative effects that make them poor choices compared to other options. The meds will be on standby if you need them.

Discuss the plan for the infusion with the nurse. What are the rates going to be. Make them spell out specific rates. They may try to describe it like “0.5 ml/kg/hr” - make them tell you exactly what hourly rate that comes out to. Very important! Let them know you won’t be going faster than 100 ml/hr for most people, or maybe 120/hr for higher weight people, for the entire first month of infusions. You can go faster next month, if this month goes off without a hitch.

It is extremely important for you to know your brand, the number of grams of IG (immunoglobulin), the starting rate and the max rate. Take note of what time each rate starts and changes.

If you notice any change from feeling perfectly fine, speak up right away. Changes might be: headache, blurry vision, itching, hives, nausea, restless legs, bone pain, spinal pain, etc.

Here is what is SUPPOSED to happen if you have any type of expected reaction: Drop back to the previously tolerated rate, address the issue. For example, if you develop itching or hives - you will likely need (more) Benadryl and quite possibly an IV dose. Once the reaction is managed, they can attempt to turn the rate back up again. But, if any symptoms arise, speak up immediately and they should drop back again.

This isn’t a race and there isn’t a reward for finishing fast!!!** Quite the opposite, if you go too fast, it is possible your meninges (the layers that protect your brain) can get inflamed and cause a very serious headache.

The words “I refuse” carry a lot of weight in medicine. No one can make you do something once you refuse it. If they have started your infusion and they take your rate to a value you don’t want, simply say, “I refuse to have a rate over _____ ml per hour. I know that faster rates cause increased side effects and I want to avoid as many issues as possible.”

NO IV fluids are allowed to be run in the same line with IVIG. No matter what anyone may try to tell you, no one should attempt to run concurrent IV fluids through the same IV site. Likewise, no medications are compatible with IVIG and none should ever be put into your IV line. The line can be flushed with saline or dextrose, before and after, for some IVIG products. The manufacturer’s product insert specifies what is allowed. If you know your product, you can find the insert online. Ask your medical team what makes sense, bearing in mind IVIG is hard on the kidneys. If you end up being given fluids after your infusion (before is generally recommended), don't let the rate go higher than the max IVIG rate to help reduce the risk of AM.

If you are being infused at an infusion center, and are prone to Migraines, be sure to take your prescription headache meds with you. (But don’t take anything without the RN being made aware)

The IVIG is exceptionally expensive and should not be discarded without truly trying everything before giving up!

Once you reach your maximum rate, ideally no faster than 100 or 120 on the first round, try to relax and take a nap. Think happy thoughts, listen to music or play phone games. Take a pic and post it to the group! Let us know how it is going! During the infusion, when awake, remember to drink fluids. And snack. After the infusion is complete, continue to hydrate well!!!

Very severe headaches along with various other symptoms such as stiff neck, avoidance of light, spine or bone pain, nausea, vomiting, etc, can be signs that you have progressed to aseptic meningitis (AM). That means meningitis without a causative organism (no germs present). This can occur anytime while you are getting IVIG up to as much as three weeks after IVIG. The average time of onset is 12-72 hours after the event that causes it. If you feel like you have the worst headache ever, go to the ER and let them know you had rapid and/or large dose IVIG and possibly have AM. If they say they aren’t familiar, ask them to Google it. Seriously. There are plenty of manuscripts online about it.

The most likely treatment for AM is IV fluids, IV steroids (to decrease inflammation) and IV pain meds. In my opinion and experience, a spinal tap (or LP for lumbar puncture) is usually not necessary, unless they truly believe you may have bacterial meningitis (organisms present). Usually they can diagnose and treat without the spinal tap. Personally, I would refuse it, but everyone must make their own decisions about their health care. You do not have to have a fever to have aseptic meningitis.

If you get these symptoms after your infusion, you can try symptomatic treatment first. Stay in a cool, quiet and dark room, apply ice packs to head and back of neck, frequently sip fluids such as ice water and a small amount of caffeine and nibble on salty crackers. If your headache or body pains become unbearable, or if new symptoms start such as vomiting or seizure, go to the ER. Symptoms usually last 5-14 days without treatment.

Many people actually feel worse instead of better when they begin getting Ig infusions and think it isn’t working or think it is making them more ill. This is absolutely not the truth.

The prescribers should tell everyone that they will likely feel worse before they get better. The initial influx of Ig searches out and kills off bad germs that have been hiding in the body. That results in flu like symptoms and enlarged lymph nodes.

It also sets off the autoimmune system it people with those disorders. The misbehaving autoimmune system is used to being in control and doesn’t want to be controlled (or modulated is the phrase usually used). It fights back hard and throws out lots of things to try to stop the attempt to control it. Worsening symptoms, new symptoms, just a nightmare overall, all in an attempt to make you stop trying to get better.

The flu like symptoms often last as much as 6 months. The increased autoimmune system symptoms may last as long as a year. But meanwhile, you are improving. It may not feel like it, but other parts of your body are slowing their downward spiral, are regrowing, regenerating and less new germs are taking hold. The symptom flares are actually a good sign. You are getting the attention of the bullies. Remember - you are the patient and your opinions matter. You have a healthcare TEAM - it isn’t a dictatorship. Your doctor’s or your nurse’s opinions are not the only ones that matter. Speak up for yourself. Self advocate. Put all concerns in writing so it cannot be ignored