How to Prepare for IVIG When You Have LEMS

Brian Murphy Ph.D. avatar

by Brian Murphy Ph.D. |

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IVIG Infusions

Intravenous immunoglobulin (IVIG) infusion is a treatment option for people with Lambert-Eaton myasthenic syndrome (LEMS) who do not respond to immunosuppressive medications. The following are some tips and helpful information to assist you in preparing for your IVIG appointment.

Before the appointment

It is very important that you drink plenty of fluids before the infusion. You should start increasing your fluid consumption one to two days before your appointment. Avoid coffee and alcohol, though, as they can potentially dehydrate you instead. Being hydrated will help your veins be more full and make it easier for a nurse to place the IV. Sufficient hydration also may decrease the risk of some side effects from IVIG, such as headaches and blood clots during and after treatment.

Infusions can take two to five hours so it is important to plan ahead. Try to schedule your infusions for days when you do not have anything else planned so you do not have to rush. You also may want to plan to do something to occupy yourself during the infusion. Some ideas are reading a book, playing video games, watching a movie, doing puzzle books, or even taking a nap. You also may want to consider bringing snacks due to the long duration of the infusion. Preparing food and activities the night before your appointment can cut down on stress on the day of the appointment.

Avoiding stress and getting a good night’s sleep also may help prepare you for your infusion. Reducing stress on the body may lower the immune system’s responses and potentially make the IVIG more effective.

Check about medications before you go. Many physicians often recommend premedication before IVIG with several different options including Benadryl and Advil or Tylenol. These medications may be ordered prior to your arrival or added to the IV. So make sure to check with the nurse before you take anything yourself. Benadryl may help reduce the chances of having an allergic reaction to the treatment. Advil or Tylenol may help with headaches or general body aches after the infusion.

During IVIG

Whether you are receiving your IVIG at home or at an infusion center, a nurse will need to insert an IV into your veins in order to administer the treatment. If you are afraid of needles, it may be helpful to have something else to distract you during the insertion. The nurse can also apply a numbing cream before inserting the needle to help ease discomfort. However, these creams may cause the veins to constrict, making it harder to insert the needle. If the nurse is having a hard time finding a suitable vein or getting a good insertion, he or she may use a warming pad to cause the veins to dilate, making them larger and easier to find.

Once the nurse has inserted the IV, the infusion will begin. This will usually start at a slow rate and gradually increase over time, which is done to reduce the risk of side effects later.

A nurse will monitor you during the infusion for any signs of adverse reactions.

You may want to eat your snacks and drink more fluids during the infusion to stay hydrated and keep your blood sugar levels up.

After IVIG

After your appointment, you should keep a log of the brand, lot number, and date of your IVIG infusions along with how you feel in the days following treatment. This log can help you keep track of any side effects you might be experiencing in order for physicians to make any changes to the next round of IVIG. In some instances, your physicians may decrease the infusion rate or change your premedications to help make the procedure easier for the next time. It also can help you to know whether certain brands of IVIG products work better than others for you.

You should continue to drink lots of fluids following the infusion to help reduce the chance of some side effects. If you experience any serious side effects after treatment, contact your healthcare provider immediately.

Since IVIG increases the number of non-specific antibodies in your body, it is important to note that vaccinations may not work as well after receiving treatment.

IVIG can take a while to have an effect in LEMS patients. It is, therefore, recommended that treatment continues for at least four months.


Last updated: Nov. 23, 2020


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