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 a major struggle, however that could also be due to a bladder infection and fluctuating hormones.
It is almost 8AM and we will be starting my infusion in about an hour. It should be done sometime in the evening. I am hopeful I will not get too bad of a headache, and thus will not have to spend most of the next 6 days in a haze of meds. We shall see. If I do, at least I am extremely well stocked on home cooked food thanks to my lovely mother. If you have any movie recommendations for Netflix, HBO, of Hulu, let me know!
Any Symptom Improvement?
This is the question everyone wants to know the answer to. 🙂 I continue to be without a fever. Even when I came down with a bad bladder infection last week and the first antibiotic we tried was ineffective, I did not get above 98.5. For reference, without medication, my temperature was 99.9-100.5 ~5 days a week for 9 years prior to IVIG.
I have had hunger pangs here and there while sitting up or while engaged in an activity. This may sound perfectly normal to you, but due to a condition known as gastroparesis, it is incredibly unusual for me.
To overly simplify something complex: Due to nerve damage, my body has more important things to worry about than digestion and hunger pangs – such as maintaining my consciousness. As a general rule, I know I am hungry based on how long it has been since I last ate and if I feel like I have low blood sugar. I still experience an increase in POTS symptoms after eating (tachycardia, fatigue). I still require a rest after eating more than a few bites in order to digest without nausea, vomiting, or presyncope, which means carefully planning when and what to eat. However I think the hunger pangs are possibly a sign the IVIG is doing something to reverse the damage my autoimmune disease has done.
IVIG #4 Updates
The infusion is done. It was uneventful and I feel normal – hopefully I stay feeling this way!
1 day out
I went to bed IVIG-related pain free and slept from 1AM to 1:30PM. Upon opening my eyes, I felt no head pain or pressure whatsoever. Once I got up and moved around, I started feeling some pressure in my tailbone/head which has continued, but not actual pain. I’m hopeful the pressure is as bad as it gets rather than a sign the presssure will continue to get worse until I have a headache. I have a bunch of post nasal drip, however I think it is unrelated to the infusion. I’m fatigued and plan to spend the day relaxing!
2 days out
I started trying to sleep at midnight last night, but ultimately slept 4AM-2PM. Usually my rule is I have to get up at 11 no matter what time I fall asleep, but I figured I should sleep as much as I can. I took some Tylenol and ibuprofen because I could feel a headache lurking, but I’ve had absolutely no head pain or pressure today whatsoever! There are 3 variables different than last time. Two of the variables are supplements (NAC and PQQ) I decided to try after doing some reading – more on them tomorrow, and the other variable is being on antibiotics for a bladder infection. My fatigue level is higher than normal, but that may be attributable to me skipping my stimulant since I woke up so late.
I’ll add more, but I’m checking in to let you know no further updates will be due to a busy week, not due to side effects. I’m in the clear!