By Jen Walsh*
I have a love/hate relationship with IVIG. I love that it has keep me out of the hospital, preserved my muscles that allow me to breathe, and those that I use to swallow. I hate that it takes six hours to infuse every two weeks and that it doesn’t always work consistently to manage my other symptoms. I also hate the cost, but love the donors who makes it possible for me to receive this saving treatment.
I have an autoimmune neuromuscular disorder called Myasthenia Gravis which takes away my ability to open my eyes, walk or grip things at it’s mildest and can literally cause my diaphragm to stop working at it’s worst. Fortunately there are treatments, but there is no cure. And so, my physician team decided that I would be a good candidate for IVIG. Some other diseases that IVIG treats include, but are limited to, Multiple Sclerosis, Kawasaki Syndrome, Primary and Secondary Immunodeficiency Syndromes.
This is my guide for new patients undergoing IVIG Treatment – or those who don’t feel their treatment is going so well. I have been receiving IVIG since December 2009 and my current protocol is every two weeks.
• Hydrate, Hydrate, Hydrate – I don’t care if you don’t drink water, this is a MUST! You must start hydrating at least 48 hours prior to infusion and for the following 48 hours, not to mention during the procedure. If you are not well hydrated you are increasing your risk for blood clots, aseptic meningitis (aka the world’s most excruciatingly painful headache) and an extreme feeling of flu.
• Take Benadryl and Tylenol – Most doctors will order this in what they call “pre-meds’. Ask your nurse first so you don’t double dose. If you aren’t getting it in your IV, make sure to take it by mouth. The Benadryl gives you a better chance of not having an allergic reaction which can set off the immune response thus rendering the whole treatment useless. The Tylenol will reduce the achy, flu like feeling as your body processes the high volume of healthy donor immune cells.
• Get a good night’s sleep before and after – Anyone with an autoimmune disorder knows a poor night’s sleep can worsen their symptoms. Well, I have found that my IVIG works better if I get a good night’s sleep the night before and the night of the treatment.
• Prepare many snacks to eat during treatment – I tend to crave protein based foods but anything healthy is good. It will help to stave off a head or stomach ache. My recommendations include: cheese and crackers, nuts, bananas, clementines, or an everything bagel with cream cheese and tomatoes slices. Prepare whatever you like the night before so you don’t have to worry about it the day of the treatment.
• Avoid Stress at all costs – Stress sets off the immune response and will render the treatment less effective because your faulty immune system wins the fight, so to speak. I have found when there is high stress, my treatments do not work so well.
So, that about wraps it up. While I am sorry to hear you have to have IVIG, I truly hope this helps.
*Jen Walsh is a Great Lakes Chapter Member from Grand Rapids, Michigan who has published multiple articles and blogs on her experience with Myasthenia Gravis.