Hello Jen.... I am from Canada so some of my answers may differ.
I was diagnosed in 2012 and have been on IVIG ever since that time. In Canada, IVIG is covered by our Ontario Health Insurance Plan so we are very very fortunate to not have to come up with any out of pocket money for it. I can't imagine the added stress that is for you on top of this new diagnosis.
RATE OF INFUSION: Originally I started infusions once a month, getting about 1.4g/kg(80g total), infused in one day. That worked for quite a while but then in the last few years, I was having more and more chronic swelling episodes every time I caught a virus. My immunologist decided to raise my dosage to 100g every month, which I infused in one day. My body struggled with this amount of IVIG in one day and the side effects were getting worse so we talked about the options and decided to go bi-weekly. Every 2 weeks I would infuse 50g, all in one day.... much easier on my body. I am a slow infuser, never getting above 200 ml/hour, so I am there for about 4 hours every time.
Side Effects: I have quite a few side effects and they have not improved to be honest. I have developed chronic migraines from the IVIG treatments and SCLS episodes. I have treatment on Fridays. Saturday and Sunday I feel flu-like, brain fog-like, anxious, and like I have cement in my boots... By Monday these symptoms are starting to subside. However, a migraine cluster sets in Monday evening that will last 3 days. By Thursday evening, I am feeling better.
How to Mitigate Side Effects: Before Treatment- I am given reactine (cetrizine hydrochloride), x-tylenol, & solumedrol i(n IV form) to help me not react to infusion. During treatment, a bag of D5W runs with my IVIG to hopefully help me not get as many migraines. I make sure to drink lots of water. After Treatment: As soon as I get home, I take another cetrizine hydrochloride and keep up with that for the weekend, more tylenol or advil, and drink lots of water to try and flush my system. I try to behave myself for the weekend and not overdo it. I have migraine medication that I take to get through the migraine cluster.
My Dosage: My immunologist did not want to start at 2g/kg because he said that was our upper limit. We will work our way up to that if needed. I see him every 3 months and he monitors my episodes, treatments very closely to ensure that they are working. I did try SCIG last year during COVID as my immunologist didn't want me exposed to the hospital. I LOVED it and the freedom it gave me. I was on it for 6 months. However I was not able to infuse enough product to keep the disease behaving. We are going to revisit the idea of a hybrid model once COVID settles down where I can do SCIG and then a monthly top up at the hospital. I have such respect for my immunologist as he is willing to try whatever I need to make this work.
Does anyone have a port? No and again my immunologist is reluctant to put one in yet because it opens me up to the the risk of bacterial infection. My veins are getting harder and harder for the nurses but they are pros. I try to drink lots of fluids the day before treatment and make sure my hands are nice and warm when I arrive to have my veins in the best shape possible. So for now we are steering clear of the port. If I need it for other medical issues, we will use it for IVIG but so far that is not necessary.
Travel: My immunologist has encouraged me to travel and live life as normal as possible. We have been to Europe 2X and to Cuba 2X since I was diagnosed. This has been a real wake up call for our family to appreciate the time we have and seize the opportunities to enjoy our time together whenever we can, wherever that is. I have been able to plan the trips around my infusions. I just made sure I took lots of medications with me in case I went into a swelling episode when I was out of Canada.
WORKING: I worked full-time up until a year and half ago but then had to go on medical leave. I was a teacher for 29+ years and was finding it progressively harder to bounce back from treatments, get back into the classroom, and teach with the migraines. I was put on some very strong migraine medication that affected my language skills and cognitive skills. It was disheartening, so frustrating and exhausting. Up until then, I had just been able to push through and keep going.... But for some reason, my body just said that enough was enough. I am not sure if I will return to teaching. My husband says that it is time to retire and just enjoy our grandson. However we still have a mortgage and our last child to put through university. Me being sick has put enough stress on my husband, I so don't like putting more on him by not working. But I am so enjoying having the time to heal and not rushing back to work... In the perfect world, finding a job where I could work from home would be ideal.
CONCERNS ABOUT LONGTERM EFFECTS OF IVIG: There are a lot of things that scare me about SCLS.... but I am just so thankful that IVIG is keeping me alive to be with my family and have these years to play a role in their lives. I met a woman in the clinic the other day who has been on IVIG for 20 years for another disease and she is still mobile.... That seemed encouraging to me. I hope that these answers help and make sense.... Please feel free to reach out and ask anything... or ask for clarification. Know that you are not alone... Take Care, Lisa