The term “IVIg” is derived from IV for Intravenous (delivery mechanism) + Ig for Immunoglobulins.
What is an Immunoglobulin
Immunoglobulins are created by white blood cells when your immune system is activated.
- something triggers your immune system
- white blood cells are activated to fight the trigger (antigen)
- white blood cells secrete a particular protein (immunoglobulin)
Immunoglobulins are extracted from 1000s of blood donors condensed and then given via IV. IVIg is used to treat patients with compromised immune systems and do not create enough antibodies. Patients with insufficient antibodies are more prone to getting infections others would be able to fight off. Exactly how IVIg works is subject to debate, but the increase in antibody presence seems to normalize your immune system.
IVIg & Multiple Sclerosis
IVIg testing on Multiple Sclerosis(MS) patients has not been extensive. The effectiveness of IVIg for both RRMS and PPMS/SPMS patients is debated. IVIg is not FDA approved for the treatment of MS so it is limited to "off-label" uses in specific cases where other traditional treatments have failed.Due to the high expense (annual costs easily reach $120,000 USD), insurance companies are unlikely to approve IVIg without special justification from a neurologist.
Most people do rather well on IVIG and consider it their “superman juice.” IVIg is normally administered every 4 weeks with the initial dose is often straddled across 2-days. Each dose may take from 4-8 hours depending on your dose and infusion rate. After you begin the medication a different schedule may become necessary based on your reaction to the medication. Some people have a hard time dealing with side effects and those need to be handled on an individual basis.
Before scheduling at an infusion center find out if your insurance company will cover in-home therapy. Life will be much easier this way.
Prior to Your Infusion
Your infusion will last for several hours so preplanning can greatly increase your comfort. You should contact the infusion center and get as much information as possible beforehand. They may have an information sheet or general guidelines to make your procedure go more smoothly.
The actual procedure
Upon arriving to your infusion center you will have the usual paperwork to complete, will probably be weighed-in and taken to your recliner. Your current weight is important since the amount of IVIg you receive is directly related to your weight. The nurse will ask you questions about premedicating, your vitals will be taken then an IV will be started. The first hour the machine should calibrate flow rate to how fast your body will accept the fluid. If the flow rate is too fast you will probably get a headache. There is absolutely no reason to rush the flow rate as the headaches are not worth it.
If they offer fluids or steroids to begin with I always accept them. They will help the absorption rate and how well your body will tolerate the IVIg. Make a note of the brand of IVIG they are using. If you have bad reactions you can switch brands. If they give you a choice ask for something preservative free to being with.
Side Effects
A headache is probably the most common side effect and can run from mild to severe. You may run a fever and have a stiff neck during or after the infusion. My infusion center checks my temperature and vitals every 30 minutes to monitor for changes. You may feel flu-like symptoms or fatigued for up to 48 hours after the infusion. A more significant reaction is feeling like you got hit by a train. You will also be monitored for allergic reactions during the infusion. Sorry, it happens. A small percentage of patients may develop aseptic meningitis which is less than pleasant.
To Reduce Common Side Effects
To reduce common side effects your infusion center may try:
If possible, maintain a light schedule the day after your infusion so your body can recover. You may feel like you’ve been hit by a train for a day or two or ten(probably not 10).
Setting Realistic Expectations
It's very important that your expectations are set properly for your IVIG therapy. Too often people quit for the wrong reasons. Ask the staff what to expect afterwards and under what conditions you should seek medical assistance. Please keep in mind that starting IVIG is starting a PROCESS. It may take several weeks or several months before any benefits are realized. You will need to spend hours and hours in an infusion center.
Sounds like a hassle, why even consider it???
Because IVIG is one of the FEW treatments we have that can actually help us feel better. Some of the benefits may include increased energy, improved cognitive ability, and an overall reduction in MS symptoms
Talk to your neurologist, talk to other patients. Read up about IVIG as it isn’t a treatment to be taken lightly. As cumbersome as it sounds, you may walk into a room and find HAPPY patients because they are getting a treatment that improves their quality of life.
What is an Immunoglobulin
Immunoglobulins are created by white blood cells when your immune system is activated.
- something triggers your immune system
- white blood cells are activated to fight the trigger (antigen)
- white blood cells secrete a particular protein (immunoglobulin)
Immunoglobulins are extracted from 1000s of blood donors condensed and then given via IV. IVIg is used to treat patients with compromised immune systems and do not create enough antibodies. Patients with insufficient antibodies are more prone to getting infections others would be able to fight off. Exactly how IVIg works is subject to debate, but the increase in antibody presence seems to normalize your immune system.
IVIg & Multiple Sclerosis
IVIg testing on Multiple Sclerosis(MS) patients has not been extensive. The effectiveness of IVIg for both RRMS and PPMS/SPMS patients is debated. IVIg is not FDA approved for the treatment of MS so it is limited to "off-label" uses in specific cases where other traditional treatments have failed.Due to the high expense (annual costs easily reach $120,000 USD), insurance companies are unlikely to approve IVIg without special justification from a neurologist.
Most people do rather well on IVIG and consider it their “superman juice.” IVIg is normally administered every 4 weeks with the initial dose is often straddled across 2-days. Each dose may take from 4-8 hours depending on your dose and infusion rate. After you begin the medication a different schedule may become necessary based on your reaction to the medication. Some people have a hard time dealing with side effects and those need to be handled on an individual basis.
Before scheduling at an infusion center find out if your insurance company will cover in-home therapy. Life will be much easier this way.
Prior to Your Infusion
Your infusion will last for several hours so preplanning can greatly increase your comfort. You should contact the infusion center and get as much information as possible beforehand. They may have an information sheet or general guidelines to make your procedure go more smoothly.
- Premedicate as directed by your neurologist or the infusion center and always arrive hydrated. You should receive Pre & Post medication instructions prior during the scheduling process. They should also direct you about your current medications and which ones you should or should not take prior to your infusion.
- Each infusion center is slightly different from each other with specific rules and procedures. Where I go they have an extensive book & DVD, DVD players, WiFI, snacks and drinks.
- Wear comfortable clothing and take a blanket or layers of clothing that you can remove/put on to stay comfortable. I suggest you leave jewelry and valuables at home. Consider taking a heating pad in case your arm starts "freezing" during the infusion.
- Ask infusion center if you can bring a friend along or have your friend take you. Take someone that has a calming presence though. You may not feel like driving after your infusion so a friend can really make a difference. If they cannot stay the entire time maybe they can drop you off and pick you up later.
- Ensure you will have food provided or take something with you, especially if you have specific dietary needs. The place I go will have food delivered for me (but not for a friend).
- Bring something to entertain you, but try not to become a nuisance to other patients. A book, crossword puzzle, tablet computer or knitting kit usually works well. Other people sleep the entire time they are there.
The actual procedure
Upon arriving to your infusion center you will have the usual paperwork to complete, will probably be weighed-in and taken to your recliner. Your current weight is important since the amount of IVIg you receive is directly related to your weight. The nurse will ask you questions about premedicating, your vitals will be taken then an IV will be started. The first hour the machine should calibrate flow rate to how fast your body will accept the fluid. If the flow rate is too fast you will probably get a headache. There is absolutely no reason to rush the flow rate as the headaches are not worth it.
If they offer fluids or steroids to begin with I always accept them. They will help the absorption rate and how well your body will tolerate the IVIg. Make a note of the brand of IVIG they are using. If you have bad reactions you can switch brands. If they give you a choice ask for something preservative free to being with.
Side Effects
A headache is probably the most common side effect and can run from mild to severe. You may run a fever and have a stiff neck during or after the infusion. My infusion center checks my temperature and vitals every 30 minutes to monitor for changes. You may feel flu-like symptoms or fatigued for up to 48 hours after the infusion. A more significant reaction is feeling like you got hit by a train. You will also be monitored for allergic reactions during the infusion. Sorry, it happens. A small percentage of patients may develop aseptic meningitis which is less than pleasant.
To Reduce Common Side Effects
To reduce common side effects your infusion center may try:
- Hydrate, hydrate, hydrate before, during and after. IVIg is rather thick and if you are hydrated it will help the absorption of the medication.
- Try to get a full nights rest before and after your infusion.
- Pre- and post- medicate as directed.
- A lower initial dose to see how your body responds. Subsequent infusion amounts will generally be based on your current weight.
- A slower infusion rate can reduce or prevent headaches.
- Additional fluids or steroids may be run along with your IVIg
If possible, maintain a light schedule the day after your infusion so your body can recover. You may feel like you’ve been hit by a train for a day or two or ten(probably not 10).
Setting Realistic Expectations
It's very important that your expectations are set properly for your IVIG therapy. Too often people quit for the wrong reasons. Ask the staff what to expect afterwards and under what conditions you should seek medical assistance. Please keep in mind that starting IVIG is starting a PROCESS. It may take several weeks or several months before any benefits are realized. You will need to spend hours and hours in an infusion center.
Sounds like a hassle, why even consider it???
Because IVIG is one of the FEW treatments we have that can actually help us feel better. Some of the benefits may include increased energy, improved cognitive ability, and an overall reduction in MS symptoms
Talk to your neurologist, talk to other patients. Read up about IVIG as it isn’t a treatment to be taken lightly. As cumbersome as it sounds, you may walk into a room and find HAPPY patients because they are getting a treatment that improves their quality of life.
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