I am late with this post! That will teach me not to get the post set up the night before my infusion. 🙂 Fortunately, I keep notes so I can give you an idea how things went. I had my fifth infusion on Wednesday 4/5/17. I took Benadryl, NAC, Tylenol, and we infused a liter…… Continue reading IVIG #5 Update Page
Hello everyone! Here is a quick recap: Today marks 6 weeks since I began receiving 30 grams of IVIG every other week to treat autonomic neuropathy secondary to Sjogren’s Syndrome. It is my fourth infusion. I have struggled with headaches, but otherwise have tolerated treatment quite well. With this last infusion, fatigue was…… Continue reading IVIG #4 Update Page
My infusion started around 2PM and it is 5PM. I’ve had severe headaches with my first two infusions, the headache with the last one being beyond what I could tolerate. We will keep tweaking things each infusion until we figure out which changes result in less severe of a headache. Changes this time: I…… Continue reading IVIG #3 Update Page
Today is Sunday, and I had my second IVIG infusion on Tuesday. As I mentioned in my last post, the plan was for me to take steroids the day of infusions and the day after in order to prevent headaches (which are a common side effect of IVIG). Since there is a risk of secondary…… Continue reading IVIG #2 Update Page
Some people have been asking about how I am doing (thank you!), so I thought I would post an update. Today is Monday and the infusion was Wednesday. I developed a bad headache on Thursday. I wasn’t concerned about it being aseptic meningitis since there was no vomiting, light sensitivity (photophobia), or sound sensitivity (misophonia).…… Continue reading The Week After IVIG #1
My first IVIG infusion (since a series of 3 in early 2015) starts in about 3 hours. I am not nervous because we have a solid plan in place to minimize side effects, and whatever is going to happen, will happen. However, many of my family members still worry about how the first infusion will…… Continue reading IVIG Infusion #1 Update Page
Well friends and family – I am happy to say that after several attempts made by multiple doctors, and 200+ hours of efforts on my part (research, synthesizing information, phone calls, e-mails) over the past 2 years, my insurance company has finally been convinced IVIG is a medical necessity in my case!!! “After careful…… Continue reading Insurance Finally Approved IVIG!