I finally got IVIG infusions approved earlier this year and began receiving them monthly, starting in June - 3 days in a row, 48g per day for 2g per kilogram of bodyweight. Only pre-med is IV benadryl, refused tylenol since only oral form was available.
The results? I can't tell for sure if there's any benefit. First week after the side effect hangover was over each time, I felt worse than usual. Second and third weeks, felt slightly better than usual, and fourth week was back to baseline. This happened three months in a row and feels too consistent to coincidence. My urinary frequency seems slightly decreased too, and I don't get the onset of muscle tiredness or "lactic acid burn" as rapidly from doing motions like brushing my teeth. On a less positive change, chronic diarrhea has also worsened a bit in the past month. I'm not sure if any of that is from the IVIG.
Side effects were bad after the first round of infusions, pounding headache that started on the first day and unbearable nausea that started on the second day. Zofran had to be added to the IV on the third day.
Second month, side-effects were milder. Severe headache and nausea only started on the third day, but they weren't as bad as in the first month. Third month, side effects were lesser still and began on the day after the last infusion.
Insurance has approved another three months, nothing left to lose so I will keep going until there's another option to try. Finished my fourth round of infusions a few days ago and got over the expected hangover, which struck on the second day after the last infusion this time.
The results? I can't tell for sure if there's any benefit. First week after the side effect hangover was over each time, I felt worse than usual. Second and third weeks, felt slightly better than usual, and fourth week was back to baseline. This happened three months in a row and feels too consistent to coincidence. My urinary frequency seems slightly decreased too, and I don't get the onset of muscle tiredness or "lactic acid burn" as rapidly from doing motions like brushing my teeth. On a less positive change, chronic diarrhea has also worsened a bit in the past month. I'm not sure if any of that is from the IVIG.
Side effects were bad after the first round of infusions, pounding headache that started on the first day and unbearable nausea that started on the second day. Zofran had to be added to the IV on the third day.
Second month, side-effects were milder. Severe headache and nausea only started on the third day, but they weren't as bad as in the first month. Third month, side effects were lesser still and began on the day after the last infusion.
Insurance has approved another three months, nothing left to lose so I will keep going until there's another option to try. Finished my fourth round of infusions a few days ago and got over the expected hangover, which struck on the second day after the last infusion this time.